11 years Post Intervention-Sectioning of the Filum Terminale

31^st May 2023

Hello my name is Melissa Den and I live in Australia. In September of 2012 I was diagnosed with Cord Traction Syndrome, Descent of the Cerebellar Tonsils and Discopathy. Following this diagnosis I underwent the Sectioning of the Filum Terminale by Dr M. B. Royo Salvador at the Institut Chiari & Siringomielia & Escoliosis de Barcelona on 4th September 2012.

I write now to share my present health condition. Looking back over my first testimony written shortly after the intervention (the sectioning of the Filum Terminale) my message remains true; I have continued to enjoy much improved health overall. There has not been any adverse side affects to having had the procedure at all, only benefits.

Reading through The Filum System: A brief Guide written by Miguel B. Royo Salvador, this has given me more understanding of Filum Disease and how it affects the brain, spine and nervous system. I now understand that this cord traction has affected my brain, spine and entire nervous system. It has been very interesting learning about why I feel like I do and the results of reversible and irreversible injury within my body. Knowing the sectioning of the Filum Terminale has ceased any further progression of the disease has been a great relief. Eleven years on I live with some irreversible injury but am finding ways to live and try to avoid things which I have learnt aggravate  my condition.

I would also like to mention that in 2018 I was treated By Dr Wouter Schievink at Cedars Sinai Los Angeles California for a Cerebral Spinal Fluid leak.  Dr Schievick performed a laminectomy to surgically repair a 7mm tear in my dura.

For Filum Disease patients there is a possibility that other direct family members can be affected by the Disease as well, as it was with our daughter.  As a young 5yr old I noticed physical things that were unusual for a child of that age.  Given I had been treated for Filum Disease we had MRI’s done for our daughter and sent them to Dr Royo. The MRI revealed no clear evidence regarding our daughter having Filum Disease but we were advised to see how she goes, especially at the time of puberty and growth within the vertebral column. Ten years on and with Filum Disease symptoms present a second MRI was done when our daughter was 15yrs. This MRI report showed possible evidence of the condition. A clinical examination in Barcelona confirmed this and sectioning of the Filum Terminale was performed on our daughter in March 2022. Just over one year now since treatment and our daughter has benefited from the procedure with the most noticeable change in reduced back pain and headaches.

Once again I would like to thank Dr Royo and the team at the Institut Chiari & Siringomielia & Escoliosis de Barcelona for the work they do. Thank you for your time in reading this testimony. I pray that me sharing my journey may be a benefit to you or someone you know. I hope and pray as I gain more understanding about Filum Disease that the Lord may use me and my story to help raise awareness about the condition.

I continue to thank the Lord for His guiding hand upon my family and my life.

Blessings to you Melissa Den

Email:  [email protected]

Hello my name is Melissa Den, I am 42yrs and live with my husband David and three children Isaac 9, Cooper 7 and Lucinda 5 on a small mango orchard in the East Kimberley of Western Australia.

After many years and several Doctors I was diagnosed in Australia by MRI in May 2012 with a crowding of the Foramen Magnum, Posterior Fossa and Fourth Ventricle along with descent of the Cerebellar Tonsillar. Chiari Malformation was mentioned. A neurosurgeon in Australia suggested decompression surgery if my symptoms were debilitating.  I researched this and had difficultly finding a specialist in Australia who had experience performing this surgery.

I am a Christian and I strive to seek Gods wisdom and direction each day in my walk with the Lord.  There were specialist in America which had experience in my condition and after much prayer my husband and I decided to send my health history to the States to see if they could be of help.  I wasn’t comfortable with the idea of decompression but with my symptoms getting worse and the nerves in my body starting to be affected I felt I had no choice.  Meeting the needs of my young family was becoming more difficult. I tell my story in the hope of helping someone else just as I was informed when I read other peoples testimonies. I will mention some symptoms only for the reason that someone else reading this may benefit. Lower back pain for over 20yrs, neck & shoulder pain/burning 15yrs, weakness in legs and arms, numbness in right leg and cramps, pain at the base of the skull (especially when I sneezed or coughed) daily fatigue, frequent nausea, heart palpitations, daily headache/fog, pain in jaw, cheek bones and behind the eyes, inability to think/poor memory, sore throat often which came to nothing, crackle and sound of wind in the ear, affected by the cold and heat (extremes made me feel sick) and motion sickness. These symptoms were subtle in the beginning but over the years became worse.

The forward direction towards the States started to come up against resistance.  Several things happened at once giving me a clear direction that God didn’t want me to take that path.  I turned to God in prayer.  I had wonderful support from our home church, family and many others throughout Australia who also prayed for me.  An answer to prayer came when God lead me to Chiari Institut in Barcelona, Spain and Dr Royo Salvador. I emailed through my history and MRI scan in July 2012.  Dr Royo and the medical staff viewed this information and concluded that in my case there were signs for Cord Traction Syndrome and Sectioning of the Filum Terminale surgery was potentially indicated. I was also advised that it was not possible to confirm this diagnosis at a distance; it can only be confirmed in a neurological examination at the Institute.

After much prayer and what we felt to be many open doors from God we left Australia to travel to Barcelona.  The neurological exam confirmed the diagnosis and intervention was performed the following day. As soon as I woke I could feel a wonderful change had taken place in my body. The intervention not only ceased any further progression of the disease but also healed me of so many of the symptoms I once had. Immediately my face looked different and my eyes appeared physically more open. I now have vitality and stamina. I feel like I have a new body. Some of the symptoms I had for over 20 years have disappeared. This was over and above what we could have ever imagined. This result was from minimally invasive surgery. At this time, it seems Dr Royo Salvador is the only specialist who is offering this treatment. Due to the procedure Dr Royo Salvador performs I was able to avoid major surgery and cease any further progression of the disease. Dr Royo Salvador, Katharina and the medical team have extended the highest level of care and professionalism towards my husband and me during our stay. I thank them for their patience in answering my many questions and the way they conduct themselves as a medical team – meeting the needs of the patient with much compassion.

Praise and Glory to God who has been my guide on this journey.  I pray this testimony will give direction and hope to others facing similar circumstances.

Surgery date: 15/12/2020 Date of the testimonial: 12/7/2023

Joyful updates

I discovered that I had Arnold-Chiari Syndrome when I was 18 years old, inquiring about a headache that was eventually confirmed to be unrelated to the pathology.  The tonsil descent was minimal, I was completely asymptomatic and so I decided, together with the neurosurgeon I had at the time, that I would not undergo the craniectomy procedure that other doctors had advised. For 22 years, my life went on without problems, I had two children with natural childbirth and I almost forgot that I had Arnold-Chiari.

In March 2020, after a stomach flu, my ordeal began. I started having a lot of unsteadiness, difficulties in moving my neck with and occasional vomiting. My head was in a constant state of confusion, I had very intense pain in my shoulders, neck and the base of my skull. I consulted an ENT specialist thinking it was labyrinthitis, which was immediately ruled out. I had a gastroscopy and many other tests, all negative. As time went by, the situation worsened, especially because the vomiting intensified, becoming almost daily. It was the time of lockdown, and I was not able to have an MRI until September 2020, to investigate the syndrome that my mind had wanted to put aside so many years ago.

Unfortunately, it turned out that the situation had worsened considerably and severe syringomyelia and hydrocephalus appeared additionally.

The neurosurgeon I had had for years was no longer practicing; I then began to travel all over Italy, consulting among those who were considered the excellencies of neurosurgery. The answer was always the same: I had to undergo decompression surgery immediately. I was terrified, my children were 2 and 12 years old. My situation got even worse, not helped by the lack of humanity with which the doctors treated me.

I started searching on the Internet and discovered Dr. Royo’s center in Barcelona. I contacted them immediately, they evaluated my MRI and with their great compassion, they reactivated my hopes. At the same time, I contacted the Italian association of patients operated with the filum method in Barcelona. The contact person in my area, whom I will never stop thanking, explained her story to me and put me in contact with other patients who had undergone surgery like her. The Italian doctors spoke to me about Dr. Royo almost like a quack, but I decided to trust my instinct and the many patient testimonies I heard.

On 19 December 2020 I was operated on in Barcelona by Dr. Fiallos, assisted by the very kind Mrs. Gioia Luè.

Obviously, I expected to have an immediate recovery, as happened to many patients with whom I spoke.

I had a slight initial improvement, but then everything went back to the way it was before. Months went by, but my condition did not change; on the contrary: the vomiting intensified, reaching a frequency of 4 times a day. Each crisis left me completely knocked out, completely without strength and with intense pains in my head and shoulders, which seemed to be on fire with pain. I was already an invalid. My relatives had to help me to clean myself, I could not lower my head to tie my shoes, I was unstable and I was not able to have a social life, because any movement exposed me to the risk of vomiting.

The team in Barcelona had advised to do physiotherapy, and for a long time I tried to go to several physiotherapists, I went to see osteopaths, I tried to exercise, but the difficulty was also that my medical situation was complicated and here they did not know about the filum disease. After the operation, I lived sitting on a sofa for two long years, always hoping that for me too the end of my terrible experience would come, but the more time passed, the more I feared that I would remain in that condition.

When, after a long period of refusal on my part to do anymore medical visits, I decided to repeat the MRI and it turned out that what I had been assured in Barcelona was true: the syndrome had remained stable, as well as the syringomyelia. That was  in December 2022, and 2 years had passed since the procedure. I went back for a check-up with Dr. Fiallos, who encouraged me to continue looking for a physiotherapist who knew how to treat the condition and who could work with me. I could hardly walk anymore, the slightest movement caused instability and vomiting.

In January 2023, after several searches, I finally found a physiotherapist who knew my problem and had experience in treating it, and with great professionalism and kindness tried to get me back on my feet. I still couldn’t believe it: my family needed me, and I was thirsty to live again.

After a month and a half of treatment three times a week, my rebirth began. One morning, when my husband woke me up, he noticed that my posture was different and I no longer had the feeling of instability that had accompanied me for three long years. The vomiting stopped completely, it was as if my head was freed from that intense pressure that caused me confusion and brain fog. I put all my soul into it, every day I cycled kilometers on the exercise bike, Dr. Fiallos had been very clear in telling me that after the operation it was necessary to do daily physical activity and the right physiotherapy. My body finally seemed ready to get back on track.

Now I am back in full control of my life; I am back to driving, back to work, just got back from a trip and I am fantastic. I still have to regain some strength in my left arm and some head movements bother me, as do heights. But I think these are minor things, and I am convinced that I will be able to resolve these aspects as well. I continue to do maintenance physiotherapy and try to walk a lot.

And here is the story of my return to life, accompanied by my wonderful family, by the patients who have always given me courage and hope, by the professionalism of the doctors in Barcelona, by the angel of my physiotherapist and my psychotherapist, who has taught me that the disease is only a small part of my being. And with myself, who from the sofa of my house never stopped smiling and also ironizing about my condition, because life is one and it is wonderful.

For me it has taken longer than for others, but I was successful: I hope that my story can give hope to those who are going through the same painful journey.

E-mail: [email protected]

Surgery date: 15/09/22

Surgery date: 29/09/2020 Testimonial date: 10/11/2021

Brazilian patient Rosa Maria Andrade de Oliveira, 53, sent us an email a year after her intervention with our medical team. Mrs. Andrade arrived at ICSEB for the first time in September 2018 for an in-person consultation with our medical team, but couldn’t undergo surgery until 2 years later. At that time, her clinical picture was quite complex, with multiple symptoms affecting all her body. 13 months post-surgery, Mrs. Rosa sent us this message:
“Good day,
I would like to thank you and share my news with you. I’m doing very well, thank God. I still feel pain, especially with physical efforts, but that is nothing compared to how I was doing before. I got back to one of my past jobs and I’m also taking care of my house chores. I’m back to my antics, like digging holes to plant trees, thoroughly cleaning my house, etc. After those intense activities, I need to take Diclofenac and sometimes Tramal, but still my current condition cannot be compared to the one I was living with prior to surgery. I can still feel pain in the right trapezius area, but now I can keep it under control.
God bless you all. I encourage everyone who may need it, to undergo surgery at the Institut Chiari de Barcelona, as that is the best option.
Thank you very much!
A big hug Rosa Maria”
E-mail: [email protected] Tel: +55 83 998374779

The story of a family

Hello, my name is Joanna Hoffmann. I am Polish and I live in Poland with my family. I would like to tell you about my family situation and the illness we have suffered, for the sake of other patients who are facing many years of diagnoses, looking for the causes of their disease. In this way, I may help other people who are suffering. The story we had to live through was hard to bear mentally and implausible for us, but unfortunately it really happened. The symptoms of my illness started as early as childhood, but they were not too bothersome, they were varied and they bothered me at various time intervals. No one associated them with a serious neurological disease like Arnold Chiari I Syndrome.
The decisive moment of  the intensity of the symptoms came when I abandoned my ambitions, my dreams and my job in order to help my older son Norbert in his education. At that time, after many years of searching for an answer to my disorders, I was given two diagnoses in Poland: Tachycardia and irritable Bowel Syndrome. For many years I had been on psychotherapy due to my emotional labiality (going from depressive state to self-harm), which made my social relationships difficult. Finally, mental health conditions were ruled out by specialists.
However, I felt that something was wrong and I helped myself through psychological therapy to function more efficiently. I went to a neurologist because I suffered from annoying headaches, nausea, vomiting, problems with motor coordination, spasticity of my legs, numbness of the upper and lower extremities, joint pain and leg cramps. It was very important for me to rule out a neurological disease, due to my passion, climbing, and also because I started taking my children to the mountains and wanted to guarantee their safety. For more than two years they ruled out a series of neurological diseases based on my medical history, as well as my medical examinations. Some of the diseases they ruled out were: kinetosis (Motion sickness), carpal tunnel Syndrome, Rheumatism, Lyme disease, Raynaud’s Syndrome, Ménière’s disease, Arteriosclerosis, Multiple Sclerosis and Cancer. Tests showed nothing, however symptoms increased. Each potential diagnosis generated tremendous stress and anxiety. Finally, they did an MRI of the brain, the last of tests with which we were going to get an answer. While waiting for the result of this last exam, I started wondering if I suffered from hypochondria.
However, symptoms were very noticeable; I lost sensitivity in the upper and lower extremities, I became weaker and weaker, the simplest activities caused me great difficulty and pain, objects fell from my hands, I wobbled and fell without being able to keep my balance. I started having double vision and other visual alterations. When I received the result of the MRI, I visited the neurologist Celina Kauczor, to whom I am very grateful for her successful approach, as well as for the dedication to her work and to her patients. I heard the diagnosis: Arnold Chiari Syndrome. Satisfied with the fact that I finally knew what was happening to me, I thought I would just go to the pharmacy, buy the drugs, and recover. Unfortunately, I was informed that this is a rare and incurable disease, which is not treated pharmacologically; rather, its progression can be slowed down surgically by means of suboccipital craniectomy. After consulting the most prestigious Polish surgeons, I was told  I should wait until the last moment to undergo the mentioned surgery, since the risk of complications (such as paralysis or death) was too high. Their recommendation was to take antidepressants and accept a possible disability or premature death.
Looking for help on the internet, I found a Polish website with information about a new treatment method: ” Filum System”. I decided to consult Spanish doctors, hoping the disease would be ruled out. However, the diagnosis was confirmed and I was told I was a candidate for the surgery, giving me hope of stopping the progression of the disease. The Caritas Diecezji Bielsko-Zywieckiej Foundation helped me. All my friends started raising funds, and together they covered the cost of my treatment.
Unfortunately, before the intervention, my health deteriorated and intellectual disorders appeared, exactly the same that my oldest son, Norbert, had since childhood: concentration problems, memory problems, visual and auditory alterations and difficulties in his speech. My son told me, more and more often, that he had leg cramps, back pain and headaches, and he passed out twice. For years, Norbert’s problems had been associated with an intellectual disability and, based on this, we had been stimulating his development with the available methods.
Anyway, we decided to do MRIs of Norbert’s brain and entire spine to rule out the disease I was suffering from. Unfortunately, the diagnosis was confirmed in his case. Due to the fact that my neurological condition was much worse than Norbert’s, and we had been raising funds for my surgery, the foundation decided that I would undergo surgery first. They convinced me that only by recovering my health first, could I help my son later.
On November 27 2017, I underwent a minimally invasive surgery according to the Filum System® method at the Institut Chiari & Siringomielia & Escoliosis in Barcelona. I could already feel a significant improvement immediately after the surgery. Since my health condition improved daily, we decided to start the fight and raise funds to cover the costs of my son Norbert’s surgery. Meanwhile, we got my youngest son Karol tested and sent the results to the Institut Chiari & Siringomielia & Escoliosis to rule out or confirm the disease we were suffering from. Karol had symptoms of the disease since childhood, but at that time we had no knowledge of Arnold Chiari Syndrome or Syringomyelia ( In Karol’s case), and the doctors reassured us with other diagnoses that could be treated. Some symptoms subsided for some time, but others remained, unfortunately only now we know what the cause was. Finally, thanks to the help of many people, donations, and also to the Institut, we achieved what seemed to be impossible. The children underwent surgery in Barcelona on February 12, 2019. As a mother, I could not have dreamed of such a good, professional and trustworthy care for my children. I think it was the best decision of my life.
I am very grateful to the doctors: to Dr. Miguel B. Royo Salvador for dedicating his life to science, to the discovery of  Filum Disease (the disease of the 21st century), since thanks to that I can enjoy health together with my children. I also thank Dr. Horia Salca, the doctor responsible for ensuring the health of our family, who told me during the check-up visit that I could return to my passion: the mountains. I would also like to thank Nina Piórkowska for the highest level of care, friendly treatment, smile, understanding, as the person responsible for translations and inquiries. I thank the entire team at the Institut for existing and giving us hope with health and life.
E-mail: [email protected] Tel.: +48 501 748 579

“Taking an unplanned break in our life”

My name is Angéline, I’m 36, a wife and mother of 2 beautiful children. Sharing my experience here has a liberating effect and hopefully will help those who are stuck in the process of finding the appropriate treatment.
Since 2016 my life and that of my family has been altered by the diagnosis of Arnold-Chiari Syndrome type I and later on by a C5-C6 cervical herniated disc operated by Dr. P. in Bordeaux (France) in 2017.
Arnold-Chiari Syndrome type I is a rare, congenital malformation, characterized by the descent of the cerebellum through the foramen magnum, associated with unbearable daily pain, like headache when binding forward or rotating the head and when changing position, neck pain, strong photophobia, tinnitus, intense facial neuralgia, contracture of the trapezius, difficulty to swallow, lack of sensitivity and strength in the upper extremities, vertigos, tiredness, …
These symptoms, very painful and recurrent, forced me into isolation. This had an impact in my activities with my children and my husband. This condition is invisible but it’s very real! Furthermore, it is very little known even by many health professionals… who hide behind their own words whenever they feel impotent: “Madam, you are stressed!” or “you are nervous” or “you are depressed”. A well-reputed neurosurgeon simply told me: “Madam, you need to see a psychiatrist”! This irritated me! Imagine the psychological impact on my family and work life! I’ve always been active and all of a sudden I found myself with pain that forced me to stay home and leave the caregiver job that I loved so much. Therapists must be trained for pain treatment … there’s still a long way to go and for some radiologists to train to advance in knowledge and not to denigrate!
Luckily my GP, who knows me well, had the will and energy to keep on researching and finding a diagnosis. Since then, I had various tests and received several medical opinions (at the CHU in Limoges, at Châteauroux Pain Clinic, at Kremlin Bicêtre Paris, at Bordeaux Sport Clinic). They prescribed intense treatments, then injections of botulinum toxin into the jaws, occipital region and trapezius initially at Limoges CHU and then in Issoudun with my rehabilitation physician in the trapezius area and in the sternocleidomastoid muscle. These injections act on the hypertrophic muscles and their effect lasts 2 to 4 months.
I consulted several times a neurosurgeon in Paris, who’s well known for his experience in this condition. However, he considered that nothing could be done in my case, as the stage of my condition was not sufficiently advanced.
After the cervical herniated disc surgery in Bordeaux, I was directed to a rehabilitation centre in Issoudun from December 2017 to July 2018. During 7 months my children didn’t see their mom and my husband managed to get by on his own. There was so much sadness in their eyes when I returned home every Sunday night. Despite everything, I wanted to show them that I remained strong and positive and that our love had to keep us together!
During my stay at the centre I met wonderful people both among the multidisciplinary staff and the patients. Thanks to their skills, their ability to listen, their humanity, I gained some mobility in the upper part of my trunk. With time, I regained my self-confidence and recovered, even if partially due to the symptoms of Arnold-Chiari Syndrome.
My rehabilitation physician at this centre was Dr. Gianluca Pisciotta, who became like family, a trusted person and my “saviour”, who never judged me like many others did! His experience, not limited to France, led me to consider a different surgical approach, which is applied at the Institut Chiari de Barcelona, an international reference centre. This includes the sectioning of the filum terminale, a much less invasive and risky intervention, compared to the suboccipital craniectomy that is performed in France. Through an incision at the level of the sacrum, the ligament (filum terminale) is reached and sectioned, thus releasing the abnormal tension that it exerts on the spinal cord and that can produce a lack of blood flow (idiopathic Syringomyelia).
I thought about it and made my decision freely. Dr. Pisciotta, as well as the therapists and my GP, supported me in my fight and in pursuing a solution. Thus, we prepared a dossier to send to Barcelona in order to know the opinion of the specialists at the Institut. Despite the economical and emotional difficulties, I decided to go on without the help of donations, as this was my battle against a disabling condition.
In October 2018, Dr. S., neurosurgeon in Barcelona, diagnosed: Neuro-Cranio-Vertebral Syndrome, Multiple disc disease, Descent of the cerebellar tonsils (Arnold-Chiari Syndrome type I). After several mails, also with my doctors, I got in touch with an association that guided me when I had to take my decision.
On 7 November, I had a 2-hour consultation with Dr. S., with the assistance of my translator, followed by preoperative tests and finally the surgery on 8 November. Only a few hours after surgery, I already experienced some improvements – I couldn’t believe it – except the pain in the sacrum region due to the intervention. What a relief for my family and me! Congratulations for the human part, listening and kindness of Barcelona staff!
I had post-surgery check-ups scheduled, one very positive in December 2018 and another one in November 2019 with new scans.
I’m immensely grateful to Dr. Miguel B. Royo and his staff, for being very skilled both on a human and technical level.
I can now tell to all those who suffer from this condition that its progression can be stopped, as well as the pain and its cause. We can’t keep on suffering without doing anything. We deserve a better quality of life. It’s true that this is a rare condition, however if the costs of the sectioning of the filum terminale were covered – at least based on those of the surgery that is performed in France – or if the travel costs were covered, how many people could stop suffering?
There are doctors who still have too many prejudices and people, whom we know well, that call us “psychiatric depressive”!
I made it thanks to my research and perseverance, with the support of my husband, my children, my friends and doctors. Today I’m doing well. I did a day hospital rehabilitation in Issoudun for 5 months, I started to do activities again with my kids and my husband without being in constant pain as before. Regarding work, I’m participating in a professional reorientation programme, which includes social and health care training and will allow me to keep on helping people, that is what I love to do.
A new serene beginning is waiting for me. I’m deeply grateful to my family, Sylvie, my friends, my doctor, also to the Rehabilitation Centre in Issoudun, where Dr. Pisciotta’s experience together with the therapists, the caregivers and the patients played a fundamental role in this long journey. It will leave an indelible mark on my children and my husband …. but we won the battle!
Email: [email protected]

I would like to give my testimony 10 years after my Filum Terminale Section practiced in Barcelona.
Dr. ROYO operated on me in 2009; I can affirm that I am fine, I would say very well compared to my status in 2009 (see testimonial of the postoperative from 2009). Many signs have disappeared and headaches are almost non-existent. If they appear, they are minimal and fleeting and largely bearable without any medication. Unfortunately, I am back in Barcelona, not for me, but for my daughter who also has Arnold-Chiari syndrome.
In France, of course, doctors tell you that it is not a hereditary disease. However, my daughter has the same pathology than me, it is strange … since it is not a congenital malformation for French health. But without a doubt, we went to Barcelona.
I hope that for her, the surgery will be a success as in my case, so that she can continue her life with serenity. I hope this testimony will help patients who have doubts.
I would like to thank the Barcelona team for their hospitality and, especially, their knowledge that allows giving fullness to the life of the patients.

E-mail: [email protected]

Date of intervention: February 2009

My name is Valérie, I am 43 years old, live in France and suffer from Arnold Chiari I Syndrome.

It all started eleven years ago right after my first labor. I started to suffer very strong headaches when laughing, coughing or sneezing. As time went by, the pain grew stronger, almost becoming permanent, very rough and hard to control.

Two years ago in 2007, I could not stand this pain anymore and I asked my doctor if I could have an MRI done to control both of my cervical protrusions. I was then diagnosed with the Arnold Chiari Syndrome.

I went to see a neurologist and neurosurgeon because the pain came back unbearable and I could not go to work anymore.

The neurosurgeon told me I could have the surgery done but while being able to stand the pain it was better not to do anything since he could not guarantee the disappearance of the pain.

I finally decided not to do anything, since opening my skull without having a good result left me amazed. I took many different treatments during 2 years to calm my pain, treatments that have made me gain more than 20kg! Besides, they did not calm me.

I started to look through Internet until I found Dr. Royo´s webpage. I immediately got in contact with French operated patients and learned about their stories.

In June 2008 my state got worse at a fast paste. After 6 months some new symptoms appeared:

– Loss of balance. – Loss of strength in arms and legs. – Chocking often. – Difficulty in breathing. – Pain in my ribs and chest. – Permanent Asthemia. – Paraesthesia in hands and feet. – Incontinence. – Neck stiffness from strong pain when moving. – Not able to stand still or sit for a long time.

I had an uncomfortable sensation hard to explain and especially the headaches, which only calmed when I laid on my back.

I decided to go see Dr. Royo in February 2009 because I didn´t want to have the craniotomy done, a traditional intervention practiced in France.

I had the medical visit on Monday, had the intervention of the section of the filum terminale on Tuesday and was discharged from the clinic on Wednesday. I was so happy when I noticed that my head didn´t hurt anymore! I was able to return to France sitting instead of laying down in the car like on my way here.

Now it has been 7 months from the intervention and I feel much better.

Although some symptoms remain, I should mention the following:

– The headaches are almost inexistent and do not persist as before. They are less violent and pacify faster without treatment. – Disappearance of pain in my ribs and chest. – Disappearance in difficulty in breathing. – The head movements are easier. – Almost total disappearance of incontinence.

I still have sometimes instability when making big efforts but I have less Paresthesias. I think one must have a lot of patience and not be in a hurry, because time will do the rest. My daughters have recovered a mother who now smiles.

I thank Dr. Royo and his team for giving me back the desire to live.

E-mail: [email protected]

San Giovanni in Fiore, 31th May 2019

31th May is a special day for me. I could say it is my ninth birthday because nine years ago I was born again. Today, I want to send a special thanks to those who improve people’s lives every day, as it has happened to me. After nine years, I can say that there are exceptional people in the world, such as Dr. Miguel B. Royo Salvador, Miss Gioia Luè, the entire team of the Institut Chiari de Barcelona (Spain) and the members of the association AI.SAC.SISCO Onlus (Italy). They brought me back to life, giving me the strength to be reborn and smile again.
Thank you with all of my heart because if today I can write my story, it is because I owe it all to my adored Dr. Miguel B. Royo Salvador. I will never stop thanking him for what he did for me because, without his help, I would not have been here for years.
Dear Doctor, I will always carry you in my heart and I will always thank you for what you did for me. Thank you for existing!
Maria Pia Ambrosio

Surgery date: 22/11/2018

First of all, my deepest gratitude to the medical team headed by Dr. Marco V. Fiallos and my congratulations to Dr. Royo on the Institut’s 10th anniversary
I want my testimonial to serve as a thank you for your work and efforts for so many years and as a proof of the reliability of the Filum System technique for which you have worked so hard.
I also want it to reach both the academic and medical field, to make people think about the importance of training, so that cases like mine do not fall into administrative and social ostracism.
I would also like to shake the consciences of some medical professionals who perform their work in an impersonal way, without taking into account the suffering of patients with no means to be heard.
Until May 2018, when I contacted the ICSEB, no one had associated my health problems, disparate and increasingly intense, to a spinal cord traction, nor suspected the existence of a Chiari type I, not to mention relating my symptoms to a terrible disease – “Syringomyelia” (centro-medullary ischaemia oedema).
My childhood memories are of muscular pains, orthopaedic insoles, repeated throat infections and bronchitis. In my adolescence and youth, I coped with the studies and life of this age with a lot of physical and mental fatigue.
When I started to work, the tachycardia, chest pain, choking sensation, constant throat infections, later on ear infections, vertigo also began. I had aphonia with minimum effort, sensation of suffering a continuous flu. Antibiotics and anti-inflammatories became my usual companions.
In my thirties I started to have sporadic episodes of shoulder and arm pain. When in bed, I had pain in my legs that would not let me relax (someone thought of rheumatoid fever, although over time the rheumatic factor was found negative).
These pains intensified and became chronic, leading to a loss of strength in my hands, tingling and loss of sensitivity. I was diagnosed with bilateral carpal tunnel syndrome and after spending an almost complete course working and not sleeping, they suggested surgery. I also underwent throat surgery due to infections, since they diminished temporarily only with penicillin treatments.
In my forties, muscle aches, stiffness and the usual fatigue intensified. Stress? Maybe I had to relax and delegate responsibilities. But this does not happen to those of my age.
Neck pain and torticollis were frequent, arthralgias made their appearance. Episodes of tachycardia lead to a more in-depth study of the heart and a treatment with bisoprolol.
Later on I was told about possible fibromyalgia. I saw a rheumatologist and with a blood test he diagnosed polymyalgia and recommended treatment with corticosteroids and muscle relaxants. At the beginning, the pain subsided, but after some time it appeared again with greater intensity. Insomnia began and with it more vertigo and weak immune defenses.
Already in my fifties, in addition to the symptoms of menopause, dizziness, pain in upper and lower extremities, intercostal grid and knees persist, making it impossible walking down the stairs and kneeling down. I experienced periods of lumbosciatic.
MRIs showed lumbar, cervical and dorsal disc disease.
I received a diagnosis of cervical myotensive syndrome. I got used to the loss of tone in my voice, the swallowing difficulty when tired, the loss of balance and instability.
In 2016 I suffered a work accident in which I fell down the stairs and broke my left wrist and hit my lower back. The ordeal of a constant and throbbing pain without remission began.
In rheumatology I was diagnosed with a major lumbar nerve entrapment, although the administration considered it a degenerative process. In traumatology, they recommended a bone density test. The osteoporosis test result was -3.
I tried a treatment with bisphosphonates, which resulted in extreme spine stiffness and inability to move that mainly affected the left limbs. They recommended a scintigraphy (I still do not know well what for). After a period of recovery, they recommended treatment for osteoarthritis and arthritis. I turned to ozone infiltrations, without results. The sequelae of neuropathic pain in my left leg and feet remain and the low back pain as well.
Between the years 2017 – 2018 began the tremors and the sensation of salty taste in my mouth, always accompanied by unbearable pain in the lower end of the spine. Every day I had the sensation of a more and more crooked jaw (like dislocated), the neuralgias, the stabbing sensation in the eyes, the choking and the sudden loss of voice. In neurology they interpreted this as cervical impingement and recommended physiotherapy. The response was very bad, after 4 sessions, with loss of strength in my legs.
My immune defenses got weaker; I had urine infection, followed by herpes zoster in my arms. I took an antiviral and anticonvulsant treatment. I was in pain when defecating and had extreme constipation. Hypothermia reached 32ºC.
At this point I only had two options left: ask God to take my life, or find some way to heal.
I started to search the Internet and associate symptoms. By chance I found a video on You-Tube about Chiari. It sounded familiar to me. I discovered the ICSEB web page and the information it contained made me think that in Barcelona they could help me. I requested an appointment in May 2018.
The medical team informed me that, in addition to multiple disc disease, the MRI showed a descent of the cerebellar tonsils and the Filum disease, generated by a spinal cord traction caused by an excessively tense Filum terminale.
When I found out about this I felt a mixture of pain and anger. How did I get here?
I tried and found the means and booked the intervention for last November. Everything went as the medical team had described to me, although my expectations at first were far below my actual evolution.
Being able to leave the hospital walking and facing a trip of 1000 km gave me a lot of security. On the trip I noticed a visual clarity I was not used to. It has been 3 months in which I have still had pain (mostly lumbar) but different from the stabbing feeling I used to have. That dagger, metaphorically speaking, that was stuck between my buttocks disappeared. The pain in my feet diminished and only reappeared in moments of fatigue.
Rigidity and lack of flexibility are disappearing. The intestinal function is regularized. The only negative aspect is a feeling of nervousness (which can be due to personal and work reasons) and the lack of stability in my vision (which I perceive as changing at different times of the day). I hope that, as a result of an enhancement of cerebral circulation, they will both eventually disappear.

It has been over 2 years since my surgery. I wanted to wait a long time to give feedback. This is my experience.
I suffered with symptoms for a long time. They continued to get progressively worse until I couldn’t take it anymore. Before surgery, literally every time I changed positions it would trigger intense head pain! Just sitting up, stretching or even rolling over in bed would trigger the pain. I had additional issues with swallowing, hiccups, muscle spasms in my neck and upper back, pain in both feet and dizziness.
Immediately after surgery, literally all my symptoms were gone. ALL of them. This was very exciting!
For the first 30 days, perhaps due to post surgical steroids, ALL symptoms were gone!
From 2-6 months after surgery I went up and down. I did occasionally have some headaches or dizziness with certain activities or if I did excessive physical activity. My incision did have one spot that an extended time healing. The headache and dizziness was the only symptoms that returned during this time. I believe this was directly related to inflammation on the spinal cord, either from surgery or physical activity.
From 6-12 months, all symptoms were gone except I would have an occasional headache or dizziness. This would happen less frequently and they were less painful.
1-2 years after surgery. I continue to have all symptoms gone except occasional head pain and rarely dizziness. I only have head pain if I do excessive physical activity.
I can now garden, go to the gym, do yoga and play with my grandkids. I can do so many things now. Some days I do way too much and I forget that I still need to be cautious with my condition. I would say I am 95% improved. I will rarely get a mild headache if I overexert myself.
This surgery was life changing. I’m so grateful to Dr Salca and the entire team in Barcelona. I would highly recommend this procedure for anyone with chiari or syringomyelia. So happy I can live a very normal life now.
Thank you!
Patricia Tanis Farmington, Utah, USA Surgery Sept 13, 2016

Jesus led me to the Institute de Chiari de Barcelona, and the clinic/surgeons/staff in Spain saved my life, got me out of the bed, and gave me and my family HOPE and a quality of life! I whole-heartedly recommend that patients struggling with Chiari or tethered cord (tight filum) or related syndromes research and contact one of the bilingual staff and start the process of education, relief and HOPE! Most professional atmosphere my wife and I have experienced during my struggle. Per the Institutes recommendations and with the diligent and wonderful help of Katharina Kuhn: traveled from the US (Mississippi) to Barcelona, had pre-testing done here in Mississippi, stayed down the road from the clinic/hospital in Barcelona, received a complete 2 hour pre-surgical exam with explanation of my conditions and what the surgery would entail by Dr. Fiallos, received surgery/care from Institute/Dr. Fiallos, wonderful post-op care, and a thorough post-testing before my wife and I returned to the US. Again, we were amazed at the professionalism throughout the entire process, and are doing are part to provide awareness that HOPE can be found at the Institute de Chiari in Barcelona. God Bless you and your entire staff!
Email: [email protected]

Testimony update: 21/06/2017

Nicholas’s Magnetic Resonance Images

The most recent MRI reading indicates: ”currently an obvious decrease of the small hydro-syringomyelic cavity between C6and T1 can is observed”.

Hello everybody, my name is Nicholas, I am a six year old boy and I live in Milan.

When I was three years old, my parents found out that I had a rare disease, the Arnold Chiari I, with Syringomyelia.

My Mum and Dad broke down, they took me to see many doctors, they also contacted many of them by phone, email, etc…but they all said that I would have to undergo a craniotomy and that was the only type of surgery that would solve the problem. My Mum and Dad did not settle for this, they absolutely wanted and had to find a different solution.

And then some day they came across the Institut Chiari de Barcelona, they took me there for an appointment during which Dr Royo said that was necessary to proceed urgently to a surgical Sectioning of the Filum terminale procedure.

I have to admit that in my mother was quite sceptical in the beginning; she did not believe that the surgery was useful. Then she decided to contact many Italians who had already undergone the surgery.

After talking to a lot of people, my parents decided that they would put me through surgery, and I went for the procedure on 5 July 2012.

I checked into the hospital the previous night and at almost ten o’clock in the morning they took me to the surgery room; I was crying a lot because I had to leave my parents behind, but frankly, the surgery di not even last an hour, and was able to hug them again shortly after.

Not long after, many of the symptoms that I had improved: I did not urinate in the bed during the nights anymore, I did not fall over, my sleep apnea went down by half, and also the sound of my voice improved.

Nowadays I lead a normal life, I am going to school, I play football and above all, I never stop, I run, jump and quarrel with my sister.

On 13/03/2015 I had the annual check up MRI done, and what can I say, it is unchanged, I have not gotten worse and hope to continue this way!

On 1 July 2015 I went to the check up appointment, I they noticed that my left arm does not respond well to the reflexes, that is because of the syringomyelia, we so not know whether since before the surgery or after, because you have to know that before I did not let them do the physical examination, I was little and every time I saw a doctor I started to cry. So, I did not have a previous physical examination, and the doctors do not know when it happened, but generally speaking, everything is going well, I have a normal life for a seven year old boy.

For the time being I thank Dr Royo, Mrs Gioia Luè and the entire team for the professionalism and kindness.

A special thank you to him, a man, an outstanding physician, Dr Royo, who has dedicated all his life to studying this condition, and thanks to him, people like me have a better and dignified life.

And now I would to speak to you, the patients: do not give up hope ever, resist, because only strength and hope help to continue, and do not quit smiling, because life is beautiful and above all, only one, so enjoy it!

Bye, everybody!

Nicholas Amico

Contact with my Mum for any information: Elena: +39 327/1887662

Surgery date: February 2008

My name is Daniela Putzolu,  I was born in Nuoro (Italy) on 01/02/1980 and I live in Macomer. I’m going to tell you my story briefly:
I started to study dance in Macomer at the age of four and I did it until I was thirteen. I had always headaches and back pain, almost unbearable, but I kept on dancing because for me it was more important than my own pain. By medical prescription, every year I had checkups because doctors told me that the pain depended on the effort of the dance and I was constantly taking anti-inflammatory pills because of it.
My dance teacher took me to Rome for an audition at the National Dance Academy. I won, with great merits, and left to pursue the dream of my life, to become a dance choreographer. So many sacrifices and a lot of study to reach my goals. The years went by, my suffering worsened, my problems with the eyes, sensitivity and balance also increased. I could not feel the heat and the cold and I was always anxious. In my fourth year at the Academy, I was selected by a great choreographer for a show in Sweden. I went to Sweden and on the last day of the show I felt bad. My left leg failed and I had a severe pain but I took painkillers and it became less persistent.
We went back to Rome and Christmas vacations were right away. I returned to Sardinia and after two days I felt bad again. I went to the orthopedistand asked him for an urgent MRI. At the Cagliari hospital, I was told that I would have to wait. There was a long waiting list and it was Christmas but I was feeling bad so I decided to do the MRI in a private center because it was faster. In two days, I did it in a  radiological center in Cagliari. “Herniated disc to be operated urgently” was the result according to the specialist.
I brought everything to my doctor who gave me a therapy to calm the pain while waiting for my next trip to Rome and for taking a decision on the surgery for my herniated disc.
I left and, despite the pain, I returned to my dance classes. The following day my left leg failed, I had no strength, I had violent headaches and I couldn’t feel my left hand. Everyone was scared and I was admitted to the San Giovanni di Dio Hospital in Rome. They called my mother asking for my MRI done in Cagliari. Other tests, like CT scan, contrast MRI,  were done immediately. Syringomyelia and Arnold Chiari Syndrome was the immediate diagnosis. I had to interrupt both of my studies, dance and High School.
I was getting worse and worse until my doctor decided to have me visited at a specialized center outside Italy, the Institut Chiari in Barcelona, to avoid the craniotomy (a very delicate, invalidating and dangerous surgery). We couldn’t wait any longer, as I was feeling so bad, so we went to Barcelona with my doctor because he was very worried about me. We got there and I was told I had to undergo surgery urgently.
Today I can tell my story. Currently, I am better. Unfortunately, I could not go back to dance school due to the lesions caused by the fact that I underwent surgery late, but I am alive and I owe my life to Prof. Alessandro Rusti, my doctor in Rome, whom I will thank for all my life for having the courage and strength of not opening my skull. Thanks to the entire surgical team of the Institut Chiari & Syringomyelia & Scoliosis de Barcelona, specialists in these pathologies and especially thanks to Dr. Royo who now is my guardian angel.
Daniela Putzolu Mail: [email protected]

Surgery date: June 2015

My name is Olga, I am from Tver (Russia) and I am 28 years old. Everything started in school; I often had headaches, dizziness, sometimes vomiting, was easily fatigued, weakness and darkness of eyesight. The doctors, without examining me, diagnosed only vegetative-vascular dystonia. And that’s how years went by. Until I had a trauma in 2006. I fell. I hit my head against the ice, I lost consciousness and the cheekbone was fractured. Afterwards, it seemed as if everything was happening as in a fog, strong and constant headaches, dizziness and nauseas. It was after this trauma, that I started having very strong leg contractures several times a year. They were so strong that I couldn’t stand up because of the pain. This could happen to me on the skating rink, on the street or just at home. I was then when I began to think that it was the first sign of a serious illness, and I wasn’t wrong.
I continued like this for 6 years. Then, in 2012, I fell down a ladder, landed on my back hitting my spine. For several days, I had back pain. After a month, and for the first time, I started to have problems while walking. I didn’t understand what was happening to me: my legs didn’t respond, I had weakness, tension, spasticity, numbness in my legs and I couldn’t move my fingers. Suddenly walking was very difficult, even short distances were a challenge. I was also bothered by headaches, tight neck pains, face, lumbar and cervical pain, lack of strength in the hands and much more. 3 years of endless examinations, consultations, hospitalizations and incomprehensible diagnoses awaited me. And the most horrible: the uncertainty. It was the hardest time for me. The More painful when nobody can give you a correct diagnosis and you do not know what will happen to you tomorrow and how to continue living.
After 3 years, I was diagnosed with Arnold-Chiari Syndrome Type I despite the fact that the descent of the cerebellar tonsils was of few millimetres; many doctors did not accept the diagnosis. I remember feeling relief because I finally knew what was happening to me. The doctor told me that in this case, the decompression could help me but that he would only operate in the extreme case, when nothing will work for me and that I had to wait. I did not want to and I could not wait for disability, being a burden for everyone, for me it was the most horrible thing. And then the Institut Chiari, Syringomyelia and Scoliosis of Barcelona advised me. They studied my images and invited me to undergo surgery that consists of the sectioning of the filum terminale. We started saving and collecting funds for the surgery. My condition began to worsen quickly, I was afraid that we would not arrive on time, my legs were weaker each day, I was worse, a month before the surgery I was walking with a walking stick, I could not stand without it for more than 5 minutes. I could walk only about 100-200 metres.
Before the surgery they did not promise me that everything would change, they did not promise me that I would forever forget about my illness; they just told me that the surgery would stop the disease, stop the progression. The procedure was carried out on 30 June 2015. After it, I felt the first improvements. The doctors said the recovery would be long. They advised me to do exercise, specially bicycle exercises.
You cannot imagine how difficult the first months were; my state of health wavered between better and worse. This period was very difficult. It seemed like it was never going to end. But the time passed, my state stabilized, there were no more such drastic leaps. At this time I did rehabilitation, it helped me a lot, and then I continued doing exercises and exercise bike. I walked 1-2 km per day. And every day I fought for my lost health, I fought until, about 8 months after the surgery, I felt good.
Now, the head hurts very rarely, I walk a few kilometres a day, many symptoms are gone forever, and others appear sometimes but are no longer so strong. I started to rejoice and to value life, I have strength for everything; I started to realize many plans that previously seemed unattainable. Now, the impossible becomes possible for me.
My whole family and I would like to express our great gratitude to Dr. Miguel B. Royo Salvador, Dr. Marco V. Fiallos and the entire ICSEB team. You made me a healthy and happy person; you gave me back my full life. Have health, prosperity and success in your work!
Email: [email protected]

Surgery Date: July 2012

My name is Maria Sol Prado Pérez. I am 49 years old and I currently live in Ponferrada (Leon, Spain). 4 years ago I was operated with the technique of the Sectioning of the Filum Terminale at the Institut Chiari & Siringomielia & Escoliosis de Barcelona by Dr. Royo and his team.

I want to share this experience because it might help somebody affected by this disease.

I did not know that I had this disease as I never had had any symptom that could make me suspect that I was suffering from it.

It is a result of a traffic accident that occurred in November 2009, when after performing several clinical tests I was diagnosed with the following physical problems, amongst others: A / chronic neck pain, B / cervical stiffness, C / postural dizziness, D / sensation of hypoaesthesia in the upper right extremity, for which I was prescribed medical and pharmacological treatment based on rehabilitation, analgesics and muscle relaxants.

Throughout the prescribed treatment, the problems kept on increasing and the symptoms were being derived to the following symptoms: A / Cervical stiffness, B / Pain in cervical area, C / hypoesthesia in the right arm, right hand and mid back, D / Difficulty in swallowing solid foods, E / discomfort in the right ear.

As they continued and the aches and pains were increasing widely, after some time, I went to a medical centre where they decided to do MRIs of skull and thoracic spine. The result was the diagnosis that I was suffering from the pathology of Arnold Chiari and Syringomyelia .

In view of the diagnosis I decided to go for the surgery at a clinic in León, in which I was proposed an intervention by the technique of Suboccipital craniectomy with durapatch, in which the expected postoperative hospitalization was of about 8 to 12 days.

However, due to problems of scheduling of the operation, after a wait of 3 months I could not be operated. That is why I decided to ask for a second medical opinion and after a search on Internet I discovered that there was a clinic specialized in this pathology, Institut Chiari & Siringomielia & Escoliosis de Barcelona.

I contacted them on telephone and sent them all my reports that I had and I was diagnosed, without any doubt, the pathology of Arnold Chiari and Syringomyelia. They advised me go through a simple surgery with the minimal days of hospitalisation.

Some days later, after reserving the appointment for the surgery I went to Barcelona, where the centre is located, and I was operated. I was discharged on the very next day of the day of surgery.

Following the procedure, between the same day and the next day I noted that all my symptoms had almost or completely disappeared and my general condition was very good.

After the first check-up, both Dr. Royo as well as Dr. Marco were surprised a lot by my improvement.

Now I can lead a normal life, having recovered almost entirely in the pathology that I had.

In my opinion I think the technique by which I have been operated, Sectioning of the Filum Terminale, is currently the most convenient technique, for the immediate benefits that it produced in me, considering that it is fast, with a minimum stay in the clinic, in my case only one day, and I think it can be a convenient choice for any person suffering from this disease.

Finally to thank Dr. Royo and his team and the entire clinic staff for the professional, kind and caring treatment they have given me.

Date of surgery: July 2014

Hello everybody,

A year ago (2014) our daughter was operated in the Institut Chiari de Barcelona. Now she is feeling very good. All thanks to the surgery that was done at the Institut Chiari de Barcelona. Now, as a year has passed after the surgery, my wife and I have decided to summarize our experience and opinion about the treatment in this testimony, hoping that it would be useful for patients who are suffering from the same disease as our daughter.

She was operated in July 2014 for having Arnold Chiari I Syndrome. She was 14 years old then. She was the sixth Japanese to be operated at ICSEB. How did we find out that she was suffering from Arnold Chiari I? It happened during the vacations in December 2013. She was hospitalized because she had severe nausea, headache, tingling in all limbs and lost consciousness. She had a CT scan and an MRI that showed that she was suffering from Arnold Chiari I Syndrome. Later, the same symptoms appeared which she had when we were travelling and we took her to hospital, where she was admitted three times. Despite that, the diagnosis that we got was just a migraine and was not related with Arnold Chiari Syndrome I at all.

Really, our daughter had been hospitalized once when she was 5 years old for having the same symptoms. In those times, the doctors suspected epilepsy and she had to take medicines for 5 years. We remember very well how our daughter was suffering and we felt very bad because we didn’t know what we could do for saving her. It’s true that sometimes she had symptoms but the symptoms that she had while we were travelling were so identical to the ones she had when she was 5 years old that it reminded us those horrible days. Pondering over the past, we believe that Chiari surely caused her symptoms, which were attributed to epilepsy. We think that this aspect is one of the characteristics of Chiari that makes it difficult to relate the disease with symptoms.

In February last year, we started looking for the information on the Arnold Chiari Syndrome on internet and understood that there were many patients suffering from this disease and other diseases which are difficult to cure might appear such as syringomyelia along with Chiari. The conventional surgery practiced in Japan for Chiari has no guarantee of curing the disease. Although one can get postoperative improvements, it is temporary and then the same old symptoms return. While looking for the information about the disease, we found Institut Chiari de Barcelona who practiced a surgery that was different than the one practiced in Japan.

In March, we took our daughter to a university hospital of Japan, which is well known for Chiari treatment, to hear their opinion. The doctor said; “As the symptoms did not appear continuously, we will do regular check-ups and when the disease gets worse, we will think about surgery”. We had doubts about the cause of her symptoms. Even our daughter doubted the opinion of the Japanese doctor.

Then we began to look for the ways to prevent the worsening of the disease and improve the health of our daughter. Meanwhile, we sent the MRIs to the Institut Chiari of Barcelona along with the description of her health status. They explained us the relationship between the disease and her symptoms and they asked us to get a thoracic MRI to complete the study of her case, which was hard to get. While we were getting the new images done, we began to think that the best option for her would be the one that had been indicated to us in Japan, to go for regular check-up, as we did not see any worsening of his health. However, our opinion changed when we were told that the detailed study of the new MRI showed a pre-syringomyelia and it had to be operated as soon as possible. It was in June last year when we decided to get our daughter operated. “We cannot cure the disease, but we can stop the progression of the disease” it is what the Institut Chiari de Barcelona told us, and that convinced us to put her in their hands. Moreover, the surgery practiced by Institut Chiari de Barcelona is less invasive and hospitalization duration is lesser than the conventional surgery practiced in Japan. We thought if this surgery did not prove effective, we would consider going the surgery in Japan as another remedy. Although fortunately our daughter had only temporary symptoms that permitted her to lead a normal life, we opted for the surgery of the Institut Chiari de Barcelona because we did not want our daughter to suffer more when those strong symptoms reappeared and because we wanted to stop the evolution of Chiari . We took our decision without consulting our parents because we did not want to worry them.

The thing that made us doubt was the difference in the opinion between Japanese doctors and the Institut Chiari de Barcelona and the question: why to have a surgery abroad, and not in Japan? Our conclusion was that we were in favour of the opinion of Institut Chiari de Barcelona, and it did not matter much where the surgery was done. According to the testimonials of the patients from different countries of Institut Chiari de Barcelona, they did not receive adequate advice in their country, as happened to us and had spent many years to find the Institut Chiari of Barcelona. All of them commented that they had experienced some improvement and were grateful to the Institut Chiari de Barcelona team. The testimonials convinced us a lot, and talking to the 3 pervious Japanese patients also helped us to take us our decision. We realized that it was very important to hear the both views and concerns of people who are in the same situation as us.

We know that the Japanese are reluctant to have surgery abroad although there isn’t other option, but the staff at Institut Chiari de Barcelona transmitted us every word spoken by doctors in our Japanese language, and it reassured us a lot. We had no problem in communicating with the doctors straight from the first visit to the surgery. Perhaps on the one hand, as we live abroad for my work, we did not hesitated to take our daughter abroad to get operated. On the other hand, the opinions of the Japanese doctors did not influence us as because we are not in Japan.

Finally, we admire the dedication of the Institut Chiari de Barcelona for providing the assistance in several languages to help and solve the problems of the patients from around the world. If the information had not been available in Japanese at Institut Chiari of Barcelona, it would have cost us a lot to find the centre or just we would not have found it. I thank Dr. Royo, Dr. Fiallos and Ms. Yuka Takahashi for their sincerity and treatment, also to all the staff of the Institut Chiari de Barcelona for the very kind treatment during our stay in Spain.

We hope that patients in the same situation as our daughter can solve their problems thanks to the treatment of Institut Chiari de Barcelona.

Dear Dr Royo,

I am writing to you to say hello and to inform you that I am feeling very well since you performed the Surgery. My family and I are truly very grateful to you, because otherwise I would not have been able to spend such great moments with them. I started exercising these days, because I am a little heavy and that is not good for my health.

Really! Thank you again for giving me my life back and being able to enjoy so many things.

I will always be in debt with you.

Surgery date: November 2014

I’m a 40-year-old man from Japan. I would like to take this opportunity to thank Dr. Royo for having researched this disease and designed the surgical technique to treat it. I also would like to thank Dr. Fiallos, who visited me and operated on me, and Mrs. Yuka Takahashi for being my connection between Japan and Spain. I’m very grateful to all the team at the Institute. Thank you very much. I’m going to tell you about my medical history.

When I was approximately 15, I started suffering from very intense migraines, contractures in my shoulders, pain all over my body and loss of muscle mass. I couldn’t concentrate on my studies and could barely attend classes.

At 18 I was admitted to the university hospital close to my home during 2 weeks to run a few tests. At that time, it was still quite difficult to detect Chiari malformation; I was diagnosed of juvenile muscular atrophy (later on I would hear my doctor talk to a colleague in the corridor and say that he really didn’t know what I had).

Since then, I tried acupuncture, quiropractic, massage and was even stretching on my own. As I couldn’t live with so much pain any longer, I saw a psychiatrist and pretended I was depressed, so that he would prescribe me muscle relaxers (the side effects of which are memory loss, weight gain, etc).

A turning point came when I started working as a salesman. One of my clients recommended that I saw a renowned quiropractor, whom I went to see immediately. I was very lucky to be visited by him. Usually a quiropractor applies the treatments that he considers to be most appropriate, but my quiropractor, after a very thorough visit, told me that he couldn’t treat me and that I had to go to a good hospital to have tests done. He prepared a referral letter for a doctor at the hospital where they did my MRIs and found out Arnold-Chiari I Malformation. The word “malformation” scared me, but at the same time I felt relieved since now I knew the cause of my condition.

I started searching the Internet and found the university hospital that had treated most Arnold-Chiari I cases in Japan. With the referral letter from my quiropractor, I saw a specialist at that hospital. Although the members of the patient association that had undergone surgery with this doctor treated me very well, the doctor didn’t and said very unpleasant things… I couldn’t believe he was working as a doctor… without even looking at me or visiting me, based on my scans only, he said that surgery would not be useful in my case. He gave no advice at all and showed me the door.

I started doctor shopping, but I couldn’t find a specialist who would be able to provide solutions. I felt completely alone, restless and sad, I thought I would have to live with my disease forever.

I kept taking medication for depression, epilepsy and pain and it really seemed as if I was depressed. I went through a very difficult time that I can’t express in words; I was a very boring father, impatient and tired with my wife, my daughters and the whole family.

I searched the Internet using the keywords “Chiari malformation, treatment” and found the Institut Chiari de Barcelona. I read a few testimonials and about the surgical technique with great enthusiasm. I knew that was my chance and got in touch with Mrs. Takahashi.

I did 6 MRIs in a row at the hospital in my neighbourhood and sent all the necessary scans to the Institute. When they answered that I could undergo the sectioning of the Filum Terminale surgery, I immediately scheduled an appointment for the earliest date available. I travelled to Spain with my sister and my brother in law.

During the preoperative visit, Dr Fiallos was very attentive, performed the physical exam and gave me very detailed explanations like I had never had before. The doctors and the team at the Institute are very humble, but I saw a firm confidence in them and a reassuring way, thus I underwent surgery with no fear or worry.

Right after the intervention, I recovered the sensitivity to temperature and my feet were no longer cold. It’s unbelievable, the unpleasant symptoms and the contracture in all my body that I had been suffering from during so many years disappeared. The strength in my hands increased by 10 kg.

After being discharged from the hospital, I stayed at the hotel a few days. Despite not having planned to go sightseeing, I wandered around Barcelona during a week; saw the art of Gaudi, Dalí, Miró etc. My nerves, affected by the traction of the filum terminale, had been released and stimulated, so I had the opportunity to enjoy a special moment, as if the main reason for my trip were tourism and the intervention were something extra…

In the postoperative check-up I experienced even more improvements. The doctor asked me: “Why did you come here?” and I replied: “to cure my condition”. I immediately realized that was not the reason, because before the intervention they told me that the surgery aimed at stopping the progression of the disease, the recovery would depend on each person’s characteristics, so I’d better not have too much hope. After the surgery I recovered so well that I completely forgot I had suffered from that disease.

I’m writing my experience from Japan. The experience in Spain has really been the best thing that could have ever happened in my life. My family and friends are surprised when they see my face, without frowning, and tell me that I am more sociable.

I really want to share my experience at the Institut Chiari de Barcelona with those who suffer from my same condition, but if I talked too much about that, they would look at me as if I were a weird person. There are too many negative opinions from Japanese doctors who deny Japanese patients the opportunity to undergo the surgery in Barcelona; quiropractors who offer patients treatments without studying their case or having sufficient information, doctors who recommend bone-shortening surgeries…  but they did nothing for me, they didn’t offer a solution… neither they treated me properly as a patient and as a person!

What I want to say out loud is: “Do not hide treatment options from patients! Do not make choices about someone’s life based on your own values!”

I received a treatment that was 100% satisfactory. Maybe not all patients will appreciate this surgery, but here is the truth.

I want those who are hesitating to be brave and give it a try. They can contact me through Mrs Takahashi. I will tell them everything. I hope that my testimonial will give courage to those who are going through the same suffering I experienced.

Finally I’ve got my life back and am full of hope.

Thank you very much!

Rome, 30/03/2014

Dear Dr. Miguel B. Royo Salvador,

I have decided to write this letter in Facebook not only because I consider it just to thank you publicly and express my infinite gratitude and consideration, but also because I hope that my words can help people who are suffering from same genetic, rare and incurable disease as I did.

When I arrived at the Institut Chiari & Siringomielia & Escoliosis de Barcelona 5 years ago, I was a woman with many fears about the bleak future that I had been presented with: on suddenly discovering that since birth I was suffering an inherited, rare and incurable genetic disease associated with two other diseases which over time would probably lead me to total disability with excruciating pain. It was a blow too hard to bear.

I had three options: to retrace my steps and decide to undergo a dangerous skull surgery which I had managed to avoid in the same operating theatre thanks to the honesty of the neurosurgeon who was going to operate me; impotently follow the gradual worsening of the symptoms which had started to affect my life for a long time; believe in the way that you started over 35 years ago and was criticized by most neurosurgeons (I don’t know whether it’s for of lack of knowledge or for other reasons) and put my life in your hand. After talking to patients operated by you, consulting with my loved ones and listening to my mind and my heart, I didn’t have any doubt and arrived to your institute in Barcelona.

Finding the existence of such a great man who is so humble and close, supported by an equally wonderful team of professionals, it was the confirmation of the subsequent fact: that it was the right choice, the only possible choice.

5 years after the surgery of the Filum Terminale, gradually I have recovered many physical abilities that seemed lost permanently. I picked up that picked up the MRI I do every year and as always, I started to read the report with some fear and the science had again enforced your work. The report said, “ Spine: the cervical-thoracic syrinx is clearly reduced both in the highest thickness, formerly it was of 7.4 mm and now is of 4.5 mm, as in the craniocaudal extension, formerly it was extended from C3 to T4 and currently arising in correspondence of the lower limit of C4 and ending in correspondence of the middle third of the T4.”

The one who knows these serious diseases knows perfectly that this is a great result and that I do not exaggerate if I say that you were “my light at the end of the tunnel”.

Therefore, I want to thank you and your team publicly for having gifted me and many other patients, who trusted in you and were delivered a new wonderful opportunity of life in their hands.

With all my love and my infinite gratitude,

Rita Capobianco.

Surgery date: october 2013

My name is Paola Sacchiero and I am 52 years old.

When I was 6 years old I began to suffer from severe headaches accompanied by vomiting. I was diagnosed with migraine.

In 2005, I suffered from sciatica. I could not walk due to the intense pain and I underwent surgery for my L4-L5 lumbar hernia.

In 2009 I underwent surgery for carpal tunnel on my right hand and in 2011 on my left hand due to the tingling in my arms and hands, especially at night, but the tingling did not end. In October 2012, I experienced every day: severe headaches, pain in my neck, in my shoulders, in my legs and I couldn’t sleep at night. For a few years, I had been affected by nocturnal apneas, dysphagia with saliva, pills and some solids. In addition, I suffered from decreased visual acuity, left palpebral ptosis, nominal difficulties, loss of balance that made it more difficult to walk; stiffness of the lower extremities when I got up which limited me in going up and down the stairs; polyuria, incontinence, chronic constipation, episodes of confusion and memory impairment. My general practitioner told me to do an MRI of my cervical spine in which I was diagnosed with Syringomyelia from C5-C6 to D1 and a small disc protrusion between C6-C7. Searching on the Internet, I discovered that there was a highly specialized Institute for patients with Syringomyelia, Chiari and Scoliosis in Barcelona. I was reading all the testimonials from people who had these diseases on the website and I recognized my symptoms there. Then I had the confirmation of my diagnosis and, in addition, that I could also be suffering from Chiari Syndrome.

After a few days, I went to a neurologist in my city for a consultation and it turned out that I did not have many neurological problems. I answered that I always had a headache (especially in my neck), especially with every slight effort it seemed that I could explode and I always felt very tired. Then, the doctor prescribed me some blood tests that were normal. I asked if I could have an MRI to see if the Syringomyelia was getting worse as it had been for 6 month. The doctor replied that the control could wait for later. He gave me injections for my depression and topiramate for my headaches. I did the injections but I could not see any beneficial improvements but the topiramate, and from an advice of my GP, I did not take it because it had too many contraindications.

When the neurologist prescribed me the injections, I thought that he did not consider the disease, because a depression is always considered, the condition is not recognized..

In April 2013, my GP asked me to undergo an MRI scan from the skull to the sacrum, which revealed multiple disc disease and Chiari Syndrome type 1. I looked again at the website of the Institut Chiari de Barcelona where I could see that the Sectioning of the Filum Terminale was performed with a minimally invasive technique. I decided to talk to my husband who advised me to talk to his friend who worked at the hospital in our city for an opinion. From the beginning, he was very sceptical and indicated me a neurosurgeon from Paví who performed a sectioning of the filum terminale, but I replied that I had already seen it on the Internet and the technique used in Paví was not the same as that used by Dr. Royo in Barcelona. I accepted the advice to go to Pavia and leave the idea of Barcelona.

In June 2013 I went to Pavia for a visit and I asked the neurosurgeon if he would do a sectioning of the filum terminale and he answered no, that it was not indicated in my case.. He also told me that the most appropriate surgery was osteo-dural decompression. He informed me of all the risks that this surgery entailed. He told me that in Barcelona they also practised the Sectioning of the filum terminale and if I wanted I was free to go to Barcelona, but for him I would only be wasting my time in going there. I trusted what he said because he seemed a calm person. With my permission, he put me on the waiting list to undergo osteo-dural decompression surgery. He told me it would be between July and August but the month flew by and nobody called me.

I decided to send an email to request an admission because lately I was getting worse. The neurosurgeon told me that it did no depend on him and he should call the administration to request it but they confirmed that the list was still very long. Another two months passed but, again, nobody called me.

At the same time, my daughter advised me to call Barcelona to understand if the filum section was really applicable in my case, I decided to accept and called Mrs. Gioia Luè, a very kind and available person, who knows how to make you very comfortable right away. I told her my story and asked her for confirmation, she told me to send my CDs with the resonances through the web. After a while she called me, telling me that the doctor had evaluated my resonances. I had spinal cord traction and I was candidate for the surgery there in Barcelona. I decided to immediately cancel the surgery in Pavia (at the same time they already contacted me to have the operation) and so I went to Barcelona.

They immediately booked my visit for October 23, I underwent surgery the 24th and I was discharged the 25th.

As soon as the surgery was over, I was taken to the room and in a few hours I began to notice improvements. I no longer had problems swallowing, the blood began to circulate in my legs, arms and face, my feet and hands were warm, which did not happen even in the very hot summer months in which they always remained cold. After a few hours I was walking, my legs were so light, and also my arms and shoulders. The headache disappeared and I also recovered the strength in my hands. In the follow-up medical visit, after 40 days, it turned out that I no longer had dysphagia to saliva and solids, the ptosis of the eyelids or the tingling in the upper extremities, I recovered even more strength in my hands, the nocturnal apneas and the dizziness The disease stopped. Before I was discharged, Dr. Royo came to say goodbye and wanted to know how I was doing: I replied that I was fine and I hadn’t wasted my time coming to Barcelona, as the neurosurgeon in Pavia told me; on the other hand, I had wasted a lot of time not choosing this surgery from the beginning.

Many thanks to Dr. Royo, a very humble and humane person, to Gioia Luè and the whole team

Paola Sacchiero

Phone number: +39 3387886270

Mail: [email protected]

Surgery date: January 2012

My name is Anna, I live in Moscow (Russia). I am 48 years old.

I want to try to briefly tell my story. The first symptoms appeared when I was studying at school, without an apparent cause I started getting headaches and vertigos. After a few check ups at different clinics, no illness was detected. The doctors’ conclusion was: “She is healthy. There is no reason to worry, those symptoms will disappear with growth.”

Time went by, but there were no improvements. With my son’s birth the headaches got even more intense and lasted longer. They wouldn’t always go away with medication. New symptoms started to appear:

-Pain in neck, shoulder, back and the lower part of the lumbar spine

-Feeling of stiffness in the neck

-Depression

-Diminished vision sharpness

-Diplopia

-Breathing difficulties

-Unstable gait

I underwent different tests for a long period of time, and as a result I was given different diagnoses. They indicated treatment and physiotherapy. The x-ray images (MRI did not exist yet) showed spinal ostheochondrosis. Physical exercise is prescribed as a treatment in these cases. Over the following years I practiced a lot of yoga, aerobics, swimming, but the physical efforts only made my state worse. And it was only in October 2011 after new MRI tests that I was diagnosed with Arnold Chiari I Syndrome. It turned out that this disease had not been researched very much. I was suggested to remain in medical observation and, in case of a progression of the disease, to have a neurosurgical procedure to decompress the posterior fossa.

After looking for information on the Internet regarding the ambiguous outcomes of the suggested procedure I felt desperation: I had a diagnosis, but no solution – the state of my health would remain the same, with constant pain and without hope for a fulfilled life.

The only way was to keep on searching for a solution in medicine for the treatment of this complicated disease.

In October 2011 I found information about the Institute Chair, Syringomyelia and Scoliosis of Barcelona online. I immediately sent and email to Barcelona and received the reply, which I was very happy about. For the first time, the cause of the disease was explained to me. The Cord Traction Syndrome is triggered by a tight filum terminale. There were no doubts left that the sectioning of the filum terminale surgery suggested by the Institut was my only opportunity for recovery.

On 17 January 2012 Dr. Royo Salvador operated me. The benevolent atmosphere at the clinic, the doctors’ competence and attention, the quality of medical exam the day before the surgery, gave me reassured me completely if making the correct decision.

The surgery passed without pain, I immediately felt the changes in my state, that continue up to today.

Seventeen months have passed since the surgery at the Institut Chair in Barcelona, I am better every day, the biggest part of the symptoms described above have almost disappeared, I have no more headaches. New colours came into my life, I am leaving a fulfilled life. Before the surgery I had gait problems, it was difficult to walk more than 500 metres. I can now take walks of up to seven km, I practice yoga and i work. The world is wonderful when you feel healthy and strong!

I read in the testimonial on the Institut’s website that the disease can be hereditary. My son would sometimes complain about backaches and fatigue. The check up MRI confirmed a Arnold Chiari I Syndrome diagnosis and in February 2013 he was operated by Dr. Royo.  The improvements started to show immediately after the surgery: energy appeared, the backaches became less.

Many thanks to the Institut Chiari, Syringomyelia, Scoliosis of Barcelona team – they are professionals in their work. Dr. Royo gave life back not only to me but also to my son, I am so very grateful to him!

Email: [email protected]

Surgery date:  March 2008

My name is Angela Grieco and I live in Italy, in the province of Matera. I would like to tell you about how I discovered that I had Arnold Chiari I and Syringomyelia. Since adolescence I started to have strong neuralgias in the face, neck and eyes. Over the years these pains became more and more frequent. I had backaches and if somebody touched me I could feel a cord triggering pain just next to the thoracic spine. I went to see a lot of orthopaedists until a sports physician gave me some injections into that cord. When I was around forty years old the problems worsened: pins and needles in the extremities, vertigos, pain in the face, a strong compression at the end of the spine and a acute pain at the centre of the head.

After having to insist a lot I got a prescription from my local neurologist to get a magnetic resonance, and the discovery of the disease followed. I went to the Institute Besta of Milan where I was told that the only solution would be a decompression, by chance I heard Pietro Gigliola’s story and I contacted him and it was him who introduced Dr. Royo and Rita Presbulgo to me. I had surgery on 04/03/2008 in Barcelona and the improvements showed quickly, I never again had those unbelievable pains that forced me to go out with Toradol in my handbag. I can live with the cervical disc herniations and the syringomyelia C7 – T1.

I want to thank Dr. Royo for his professionalism and extraordinary  humbleness, Pietro Gigliola for sharing his story and for letting me know how to get in contact with Dr. Royo, and also Rita Presbulgo , who gave me lots of support before and after the surgery.

Surgery date: May 2012

Hello.

I underwent the sectioning of the Filum Terminale surgery in Spain on 22 of May 2012, with a diagnosis of Arnold Chiari, without Syringomyelia.

It all started put with a sudden headache on December 2011, a doctor from Shanghai diagnosed a CSF leak caused by to a rupture in the spinal cord membranes and I was treated with an blood patch in Hangzhou. After that, the headache disappeared, but a loss of strength in the left and neck stiffness appeared additionally, I wasn’t able to bend my head downwards. Other than the headache, I had already had pain the left side of the back.

I then sent all my exams and reports to Dr. Royo of Spain, he diagnosed a descent of the cerebellar tonsils. I immediately booked surgery for February 2012.

After surgery, the state of my health has improved ever so much; up to today (1 March 2013) I keep experiencing positive effects, even though there aren’t any visible changes of the cerebellar tonsils on my last MRIs.

I now no longer have intense headaches and my backache has improved by 80%, before the surgery, it wouldn’t allow me to sit for a longer while at my desk. The strength in my left hand hasn’t changed much, but hasn’t progressed or deteriorated. And when I am sitting for a long time (for example on international flights) and when it’s cold, the neck stiffness and the backache do still appear, but the situation is so very much better.

There was a time when I was lying in bed every day, thinking about how the rest of my life would go by. I was always thinking about whether I would be able to recover my normal life, I would have been very grateful, because I wasn’t able to leave my bed due to my bad health. Now, I have recovered my normal life, I am able to do the chores around the house and on top I am taking my two year old daughter travelling!

Right now I am on a business trip in the United States, it is a very long journey that I wasn’t able to imagine before. I am very grateful to Dr. Royo and his team and for giving me this life back.

Even though the post-surgical assessment is different for everyone, I recommend that everybody send their cases to Dr. Royo, I hope you will be able to receive the best treatment!

Kind regards!

Vivien Chen

*Pueden contactarme a través de Pei Chen: [email protected]

Surgery date: June 2012

It is unbelievable that this disease, even though it is not as rare as we think, is known so little, even by physicians. I am going to tell you my story; I will try to summarise 3 months in a few lines. One morning in the middle of March 2012 after lifting something heavy, I felt a pull that went up from in between the scapulas to the neck, nothing worrying, I just had a pull….it would go away! In fact, after some days there seemed to be some relief, but there was something odd, a burn that I had already felt on the neck and that over the days went up to the entire head. I started to realise that something strange was going on, what was that burning? That’s when I started to go and see my family doctor frequently, and I always got the same replies – it’s not bad, these are symptoms that don’t mean anything, you’re just stressed – I felt worse every week and noticed new sensations, tightness in the legs, in the arms, pins and needles in the hands, ringing in the ears….I had all kind of appointments, privately obviously, because my doctor didn’t believe that there was a need to dig deeper, it was just stress!

Nothing, nobody was able to explain what was happening of me until one day a neurologist, the third one, finally requested a resonance on which the cerebellar tonsils showed as low-lying, but also then: it’s nothing, you were born like this, you will live and die like this – without asking themselves why the tonsils were descended.

I decided to search the Internet, because I wanted to know more about those tonsils and I discovered that I had pathology, Arnold Chiari, that wasn’t al that innocuous, but all the opposite in fact!!!   And indeed, I got increasingly worse. I found out that there was a specialist doctor in Spain, in Barcelona, and I called straight away and spoke with Mrs. Gioia Luè, who is part of Dr. Royo’s team. She very kindly explained to me and most importantly informed me about the fact that this disease can be stopped. Managing with the help of friends and relatives we succeeded in raising the funds for the procedure. I went in June, determined and sure of myself. When I arrived, I was examined carefully and they confirmed that I could go ahead with the operation, so that I was able to do within three days the examination, surgery and on the third day I was discharged and I was able to go back home.

And so, with a small incision at sacrum level, I was able to start my life over, at last I felt “saved”, I was already certain that all the symptoms that this disease triggered in me had been blocked, but things turned out to go even better. I was feeling increasingly better with each month, the symptoms and the discomforts decreased until disappearing!

Even on the last magnetic resonance that I had done for a check up it turned out that my tonsils ascended again, they went back to their place; this is proof for all those doctors who recommended not to have this procedure arguing that it does not work for Chiari , and for the same reason they also denied the refund of the surgery fees undergone in a foreign country.

To all who may read this testimonial I want to say: « Judge for yourself », as far as I am concerned I am very grateful to Dr. Royo and his team !

Paola Faedda

E-mail: [email protected]

Tel: (+39) 340 29 66147         

The Sectioning of the filum terminale worked to cure my Chiari 1 symptoms.

I suffered from Chiari 1 from 2007 until 2012. My symptoms were headache and right lateral Nystagmus ( Dizzyness.)  In July of 2011.  I had the section of the Filum terminale by Dr Royo Salvador of the Institut Chiari in Barcelona. The time after surgery it took for my Nystagmus to go away was 14 months. I’m not dizzy anymore, no more headaches, no surgical pains.. I am the person I was before I had Chiari. God bless Dr. Royo and his staff, they are good at what they do and were so nice to me and my family. They made me feel like I had known them all of my life. The surgery was painless, I was walking on the beach 2 days after surgery and flew home to the U.S. 4 days after surgery. The surgical incision was very small and I can´t even see it anymore. The plane ride home was painless.. I didn´t even need a Tylenol or anything. The surgery sight felt tight and only hurt if I sat on it directly.

The hospital was really cool with a lot of modern design and furnishings and I never had to wait in line for any Xrays or anything at the hospital.. My favorite part was after surgery when they hooked a heat tube to my blanket. The warm air felt so good after surgery. Also I speak very little spanish and had no problem communicating with Dr, Royo as he speaks some English and also has a translator.  With my little bit of Spanish & the locals little bit of English getting around Barcelona was easy, we even toured the city before and after surgery. I have no complaints and thanks to Dr Royo Salvador and his talented staff I´m back to my life as I knew it before Chiari. Thank you so much for such a great memorable experience and treatment, you have my trust.

Brian Johnson. My email is [email protected]

My name is Annalisa Caicci, I am 27 years old, I live in the Province of Padua and on 20 December 2011 Dr. Royo performed surgery on me.

I never had any problems during my childhood: I always did ballet, lots of sports and movement. From April 2004 onwards, following a sports accident- passing on the baton in a relay race- I started having pains similar to electric shocks and stinging in the area of right side of the abdomen, and progressive loss of hot and cold sensitivity. In the beginning I didn´t give any importance to the matter and kept on going about my life normally, however with discomforts, back aches and frequent electric shocks. All of this later on moved downwards into the inguinal area and the thigh and finally, after a strong flu with lots of coughing, in March 2007 it slowly took over also the right armpit, arm and hand. After this episode, every coughing fit turned into something painful. The same happened with sneezing or any kind of effort that would involve internal compression. I started to feel very intense shocks that would radiate into the neck and the right arm: the hypo-sensitivity was a nuisance like pins-and-needles and there were electric shocks with every little jump or movement, also when simply walking or on the stairs. Due to the pains that increased with temperature changes, and the lack of the doctors´ capacity to comprehend what was the reason for these symptoms, many would ascribe it stress or a psychologic problem, in September 2007, I had a magnetic resonance of the cervico-dorsal spine done with the diagnosis of a presence of a pluricavitary syringomyelia from C4 to D8 and Arnold Chiari malformation type I.

After the initial panic that took over when I started to search for information on the internet and was finding that I was dealing with something serious, I tried to gather strength and make it through, even with my difficulties and despite the fact that I did not want to realise what kind of disease I had, or what were its consequences.

Since July 2011 I started to have hypo-sensitivity also in the ends of the fingers of my left hand, along with the pain in my right heel that would sometimes come over me. In September 2011 I discovered that a dear friend of mine had the same disease, however, she had already undergone surgery with Dr, Royo: a coincidence that I could not let go.

I spent many a days thinking about the surgery and the related advantages that she had told me about personally, and about the fact that this could be the solution that I could need as soon as possible. The idea to have surgery had never crossed my mind, specially keeping in mind the very invasive techniques that I had been told about, but after hearing this testimonial, that moved me deeply, I took a step back to think about my future and what I could be expecting. I got in touch with the Institut Chiari de Barcelona and thanks to the availability of the psychologist Mrs. Luè, I sent in all the resonances and material that I had in order to get them assessed for the possibility of having surgery.

On Sunday 18 December I left for this new adventure I was starring. On Monday 19 the appointment with Dr. Royo for all the examinations and Tuesday 20 the sectioning of the filum terminale surgery which lasted 50 minutes: minimally invasive surgery without any kind of risks. Three hours after the surgery I was already walking, I had recovered the sensitivity in right arm and thigh, and the strength in both arms, the uvula, which had been diverted returned to being straight, and furthermore an interior well-being as I had not felt for some time. On Wednesday 21 December, on the check up, Dr. Royo discharged me in order to return home and I spent ten days in total relaxation: the best christmas of my life.

I can confirm, with regards to many people who enter hospital in difficult conditions, I wanted to have the surgery in order to prevent and block the pathology, which degenerates on a daily basis. But actually I realised that I had learned already some time ago to live with chronic pain, believing that it was part of being well. Until 20 January I had stuck to a quiet life, without strains, and after the check up appointment on 1 February when they told me that I could go back to doing sports, I started to train again, to dance and to take up again all my activities without any problems.

Now, everything is different and everything is a discovery: I know that Arnold is always with me, not being able to degenerate any further, I know I have to be careful, because if I overdo it, he reminds me that he is there, with a pain or light discharges with my movements, but I am so happy to know that I am still living and living well!

I have been practising ballet for 25 years, I teach ballet, musical fitness and motor training and I love doing all kind of sports even with special care to each movement that could damage my health, despite the fact that I had to dismiss those that I could not deal with any more.

I hope that my story can be useful to many other people, because I believe that it is important to inform oneself without stopping at the first closed door, to be a little bit our own doctor, to understand what is best for our health and to get to know new and diverse techniques that, like this one, solve a big problem in one hour of surgery and with a very short recovery time.

I recommend to get in touch with Dr. Royo and the Institut as soon as possible, because I have found wonderful people who put the person in the centre of things and that return to you strength, dignity and tranquility in order to face this disease, which is less rare than it seems, in order to take back your life into your own hands.

A huge thank you to Dr. Royo who is a unique person, of great professionalism and humanity, and who has given me the chance to live for a second time, and to the entire team of the Institut Chiari, especially to Mrs. Luè and Dr. Fiallos.

My gratitude goes to AISACSISCO for their network of people that I got in touch with and with whom I continue to exchange advise and opinions.

I leave my telephone number and email address for further information.

Annalisa Caicci

+393408202465

[email protected]

30/04/2014

Two years after surgery, the patient shares the link to her personal website with us, to show us all she is able to do and how she feeling currently. Many thanks to her for this!!

www.annalisacaicci-danza.it

Dr. Miguel B. Royo Salvador performed surgery on me on 31 May 2012 and since then I hold this date as the date of my second birth!

These aren´t bombastic words; this is my current and objective existence.

I learned about my disease after having a MRI done in 2012. Beforehand I had been diagnosed with chondrosis and had been treated for it during twenty years. When I said that I didn´t feel anything in the right half of my body, the doctors shrugged their shoulders as if they didn´t understand what I was talking about, or would just ignore the information. But what was worst for me was that with every year that passed it was more impossible to explain to myself or to the doctors my sensations; I started to understand that something was happening to me, something anomalous, even though I was conscious of it. Everything would annoy me, I´d get tired quickly, as if all strength had left me, the world often seemed gray, I felt that I wasn´t alive anymore, that I was looking at everything from another world….I even struggled to chat to someone about something, it used to be so easy before – it seemed as if I had a dual personality….Altogether I felt as if my age was at least of 80 years and that every day could be the last –  it was unbearable!

It slowly drove me crazy. On top of everything there would be «surprises», for example, I could drop my handbag when walking, things would double up in front of my eyes, I could lose my balance and start to stagger about. I didn´t have any strength to get up in the mornings: my whole body ached as if I had taken a beating, it felt as if I had a concrete block strapped to the lower back – that´s how heavy it was,  during the nights I´d get up countless times to go to the bathroom, almost every five minutes.  After the diagnosis, our doctors (up to and including the main neurologist of the city, Dr. Doronin) unanimously affirmed that «you have been born like this so you are going to live like this», they then prescribed a therapy, but it didn´t help at all… My hope was on the Internet, I´d spent hours in front of the computer, but … everything to be found about my disease on the websites of Russian medical institutions and main hospitals I had already read. I couldn´t find anything new….until one day, this happened in February 2012, I came across the Institut Chiari website – a discovery for me!!! I couldn´t believe it! From that moment on I didn´t doubt for one second that this was my SALVATION. And until today I thank Dr. Royo with HUGE GRATITUTDE and WORDS OF RECOGNITION for giving me a second life. After surgery my organism is returning to my previous life, and understand that I can once again laugh sincerely, and look towards the future without fear…

After surgery I promised the doctor that I would pray for him each day, until the end of my days and this is the truth….I simply don´t have the words to express my sentiment of appreciation  and gratitude for his effort, knowledge, work, because he REALLY DOES HELP!

I whish him HEALTH, HEALTH and once again HEALTH for many successful years.

IMMENSELY GRATEFUL,

NATALIA.

19.09.2012, Rusia, Novosibirsk

My contact numbers: +7 8913-920-04-48, +7 8953-764-69-30

Skype: sotnikova.natalya

E-mail: [email protected]

Surgery date: April 2012

We are Carmine and Maria Cavallo, Italians from the Brindisi region. We very much want to and also feel that it is our duty to tell our story for those who have discovered that they affected by the Chiari I syndrome.

We are a young couple with two kids, Nunzia of almost five years and Domenico of two years. At the age of three, our beloved Nunzia was suffering from headaches. Our paediatrician assured us that this was due to her growth and that it would disappear over time. But Nunzia’s condition worsened remarkably: intense posterior left sided headache, tiredness, stuttering, loss of balance (she would fall over without noticing), muscle spasms, she wasn’t able to walk, she would get tired after just a few steps. And on top she would faint.

In February of the current year we took Nunzia to the “House for the relief of the Suffering” at the San Giovanni Rotondo hospital, where thanks to a magnetic resonance she was diagnosed with the Chiari I syndrome: compression of the cerebellum and the cerebellar tonsils due to a narrow braincase. They told us that this malformation was war very rare and dangerous, that it could lead to dramatic consequences, up to a cerebral infarction – death.

In Italy, this disease is treated by means of the craniectomy surgery, a very invasive technique, where the bone of the skull is opened and after surgery there is no guarantee for lasting results, but deterioration.

We felt that everything was falling into pieces.

It just couldn’t be true.

We decided to get a second opinion, so we approached a neurologist at the “Gemelli” hospital in Rome.

He too, studying the MRI, confirmed the Chiari I syndrome.

This neurologist seemed very optimistic to us, he was prepared to treat her by means of the craniectomy, but we had to wait for ten days, as soon as he would be back from a conference.

We went back to our village.

Whilst waiting for a call from the “Gemelli” hospital to do the craniectomy procedure, we got to know the sectioning of the filum terminale technique by Dr . Royo Salvador at the Institut Chiari & Siringomielia & Escoliosis di Barcelona over the Internet. We read the stories of those who had been to Barcelona and had had this procedure, and we contacted some of them over the phone. All of them encouraged us to pursue this path, which currently is really the only viable one. We were enthusiastic and full of hope.

We contacted the Institute in Barcelona. The psychologist Gioia Luè was very kind and organised the surgery for us. The only obstacle that we encountered was overcoming the cost for the surgical treatment.

We didn’t have the required sum available at that moment, so parishes, neighbours, acquaintances and shopkeepers helped us. Everybody helped us.

We collected the necessary funds for the surgery, the trip and the stay. On the past 12^th of April Nunzia successfully underwent the sectioning of the filum terminale surgery; and already a few hours after surgery her reactions to the reflex stimulations improved, and afterwards she no did not faint again nor have strong headaches. On 29^th of May we went back to Barcelona for a control visit. Dr. Royo Salvador confirms that the Arnold Chiari I syndrome has been blocked and there is and manifest recovery of the coordination in her movements. We also observed that she does no longer stutter and that she is keen to play a lot, just like all children her age.

We want o express our deep gratitude to Dr. Royo Salvador for his humanity and kindness. Thanks to all those who encouraged to pursue this path and to those who gave us their support in collecting the financial aid. The regional social services to not pay for the surgery and to not offer any aid.

We would like to tell those who read this letter to never give u hope, because as an old proverb of ours says: God favours the happy man!

PD: You may contact us through the numbers:

Carmine 00393334727876

Maria 00393272304822

My name is Kvartalnaya Alina, I am 51 years old. I was diagnosed in 2007 with Arnold Chiari I syndrome and syringomyelia. I had surgery in Novosibirsk, after the surgery I was doing more or less fine for two years, but in 2009 my toes started to go numb and my legs were always tense. Walking was very complicated.  In 2010, I broke one leg, and in 2011 the other one, I was hurting all over, also the back.  I didn’t know where to turn. We found the Institut Chiari y Syringomyelia of Barcelona over the Internet. I sent all the MRI images in 2011 and December the invitation for surgery arrived. On June 12th 2012, I was already in Barcelona and I had the sectioning of the filum terminale surgery. I am very grateful to all the medical staff. The day after surgery I was discharged. I was excited with the sensations, I can be seated without pain, lie down on my back, which I hadn’t been able to do since four years, I wasn’t able to be seated for more than half an hour, because everything would go numb. On the day, I was already able to on a big excursion around Barcelona.

Gratefully, your patient Alina

In order to contact: Mobile phone  +7 89639467953, home:  +7 8 383 284 76 24

My name is Dina Lopes-Basten, I am 49 years old, I am originally from Portugal and live in Berlin since 1988. I was diagnosed with an Arnold Chiari malformation in October 2011 after many tests in vain in the previous years.  I had been suffering from the symptoms, especially vertigo, strong headaches, pins and needles in the arms at night time leading to insomnia, slight incontinence, inexplicable pains in arms and legs, „blurry“ vision and little energy, combined with difficulties to concentrate, since 2007. From September 2011 until February 2012 I was not able to lead a normal life anymore. I was on sick leave for a long time, my ability to drive was limited and I hardly slept. By optimising the medication only a slight relief could be achieved. A decompression surgery was out of the question for me. Following detailed research on the Internet (besides the Institut Chiari de Barcelona I also came across corresponding institutions in the US), I decided in favour of the minimally invasive sectioning of the filum terminale with a stay of just three days in Barcelona. My neurologist in Berlin and my husband, both intelligent and open-minded people, supported me greatly in my decision.

After having previously sent my files to the Institut Chiari, I soon received the reply, that I was probably suffering from a cord traction syndrome, which would have caused the descent of the cerebellar tonsils. The consultation by the Institut Chiari team left a professional impression, so that I made my way to Barcelona together with my husband. As the diagnosis was confirmed by an extensive examination on location, Dr. Royo performed surgery on me on February 14th 2012. The surgery was a complete success from my viewpoint as a patient.  The symptoms listed above disappeared immediately and totally, I was able to stop the strong medication instantly, finally I did not have any vertigo or headaches anymore, my vision was clear again. Also the significant improvement of the reflexes and grip strength are to be emphasized.  All in all, I felt (and still do) like newborn. In the follow-up examination on April 18th 2012 the success was also confirmed from the medical point of view. I would like to thank the entire team of the Institut Chiari, especially Dr. Royo. Dr. Fiallos and Mrs. Katharina Kühn.

Tel.:  +49 170 8349594

E-Mail: [email protected]

One and half years later

I am still feeling very well.

Before the surgery I had to take also anti-depressants in order to be able to lead a more or less normal life. Since 14 February 2012 I do not need any anti-depressants anymore.

The old symptoms never came back: not the vertigo, or the headaches and neither the concentration difficulties.

I see life positively again.

I would like to thank the entire Insitut Chiari de Barcelona team.

My name is Monia, I am 38 years old and live in Italy.

My experience starts with the report of a MRI of the entire spine, due to an annoying backache that would not leave me alone and that I would define as “strange”, since the pain wasn’t confined to the back, but it would also radiate to the thoracic region and sometimes it would not let me breath properly.   I must say in advance that I had suffered respiratory difficulties in 2007, a lump in the throat, with the sensation of not being capable to let the air enter my lungs, and this problem of mine was defined as “panic attacks”. In the report of the MRI they spoke of a “suspicion of dorsal syringomyelia”.

I would like to thank the neuro-radiologist who advised me to repeat the MRI with a higher resolution machine, and who pointed me in the right direction in my search and understanding of my problem.

The report for the new MRI with contrast was the following: “dorsal spine from D4 to D9 shows a dilation of the ependymal canal, no signs of alteration of the cerebellar tonsils”; at the same time the pain was omnipresent and I noticed that my right knee would sometimes give way and that the right leg would get stiffer than the left one, additionally, when I bent down to the floor I would get dizzy and I noticed that my hands where stiff when waking up in the morning.

I approached a first neurosurgeon with my exams and received his opinion that my problem was of congenital nature; I explained my symptoms to the doctor, but those were not taken into account at all.

I was advised to practice more sports, to relax and to not think about it too much (all this orally, because I wasn’t given anything in writing).

A few months later, the symptoms always present, I approached another neurosurgeon, who said more or less the same thing as the previous one, and this time I was also given a certificate. I also consulted a neurologist, who suggested to get evoked potentials done in order to assess the suffering of the medullar spine; at the same time I decided to send my exams to the Institut Chiari de Barcelona for a consultation at distance.

I discovered over the Internet that Dr. Royo has studied the pathology (Arnold Chiari with or without syringomyelia and much more) for a long time and has operated on a lot of people with good results. I would like to express my heartfelt gratitude to all those patients seen and operated by this great doctor who have made available their experience and testimonial, sharing them with others, and who have so been able to inform themselves better regarding these pathologies.

THANK YOU Rita, Rosanna, Pietro and all the others.

In the meantime my symptomatology kept on getting worse, the headache got stronger, I had vertigos more frequently and difficulties to swallow saliva, with the sensation of having a limp in my throat and I would have nauseas several times a day; when waking up in the morning with intense pains in back and thorax (if I had been able to sleep), I realized that my situation was changing (for worse).

The reply from Institut Chiari de Barcelona arrived before Christmas 2011: the dorsal syringomyelia was confirmed, but at the same time they added that there was a descent of the cerebellar tonsils, I made an appointment for a consult with Dr. Royo in January, and I had the sectioning of the filum terminale surgery on January 31st 2012. Just eight hours after surgery, some improvements were obvious: I recovered the temperature sensitivity in the right hemithorax, I was able to maintain for a certain time the lower extremities lifted up (before the surgery this was impossible), the uvula and tongue went back to their centered position, whilst before they had been diverted towards the left.

I would like to recommend patients to go at least for an examination to Barcelona at the Institut Chiari, directed by Dr. Royo and his extremely valuable team (psychologist Gioia Luè, Dr. Fiallos, and everyone else) as they carry out  a truly complete neurosurgical examination, in my opinion.

I had to realize there that I wasn’t able to maintain the lower extremities lifted up (Mingazzini with claudication of the lower limbs), that my abdominal reflexes were totally abolished, that the thermal sensitivity in the right hemithorax was altered, the Babinski sign positive, that I had no strength in arms and hands…etc…

Every patient in his condition has to live additionally to the physical also with the psychological suffering, and always expects to find humane, apart from competent, people on the other side, that won’t lessen nor underestimate what they are going through.

I hope that every patient with a rare pathology will be able to find someone on their way that will listen and guide them towards the right solution. Dr. Royo was one of these persons for me, and I offer him all my appreciation and respect. I hope that there will be more and more doctors less dedicated to the routine and opener to research; the suffering of few people affected by unknown diseases is not of an inferior level and therefore less important than that that determines a known pathology.

I am available for those who may need it: [email protected]

Date of surgery: March 2012

My name is Mercedes Magriñá, I am 61 years old and I live in Pineda de Mar, Barcelona, Spain.

I would like to tell my story so that all those people that may have doubts can the decision that may well be the decision that will improve their lives completely.

I had my first back surgery due to scoliosis when I was eight years old, they placed a spring in-between the vertebras in order to level my back out, at the age of sixteen I had another surgery because they had to take it out since it had broken into parts at six different points. Some of these points are still inside my back because it seemed complicated to the doctors to take them out.

Ever since I can remember I’ve lived with pain and cerebral pressure that implied migraines that would last for days.

I really started to deteriorate from the age of 30 onwards; it started with numbness in my legs, hands and forearm, loss of sensitivity in entire right half of the body.

I was diagnosed with syringomyelia at the age of 38. It was only when I had surgery that I found out that I also had Arnold Chiari Malformation.

After the surgery due to syringomyelia at cervical level, they had to perform surgery again after 12 days, because the muscular plug placed on the obex wasn’t good.  I spent more than 3 months in hospital, a time during which they extracted spinal cord liquid for analysis during 25 days.

Not only did I not get better, but also I kept getting worse and worse. The loss of sensitivity was total, I couldn’t walk, and I lived in pain, tiredness and fatigue every single day.

Unfortunately the doctors told me (even after I explained the alternative to stop the disease proposed by Dr. Royo) that I was dealing with a degenerative disease and that nothing could be done and that unfortunately I would end up without any mobility in my body.

Dr. Royo as well as his entire team cleared my doubts from the first moment on, and the dedication and the good treatment that I received are especially worth mentioning.

A few hours after surgery I had regained part of my sensitivity, strength in the hands, I had no pain in the legs…

This evolutionary process kept getting better eliminating the cervical pressure completely.

This surgery did not only take away the pain but it also returned the will to live to me, I take on my everyday life with illusion, I feel like doing things, whilst before I was sunk in a profound depression that generated the daily pain.

I want to thank Dr. Royo and his team (Bárbara, Dr. Fiallos) for giving me back my smile, to me and to my family who had been suffering from this indirectly for so many years.

Special thanks to Bárbara for her caring and affectionate way of treating me and the feeling of trust that she creates.

I hope that this testimonial will help many people. If I had only known earlier about this alternative…

My name is Marialuisa Tripodi. I am 47 years old. In 2005 I found out that I was suffering from Syringomyelia from Arnold Chiari Syndrome but my problems originated long before….

And after my second pregnancy, in 1993, I began to suffer rare disorders: frequent sores in the oral cavity, long seasons in which fatigue was so strong that it used to take away all the desire of anything, and swelling appeared on coccyx level. The years passed by and chronic fatigue increased, the time spent on the couch became increasingly longer, so that friends teased me telling that I was a chronically lazy person.

Later the frequent headaches from which I was suffering since my adolescence increased accompanied with sharp pain in the neck.

I started doing physiotherapy, but strangely, during the treatment, in place of improving I was getting worse. My rehabilitator, a very attentive professional, stopped the treatment and asked me to perform a MRI when reaction to the physiotherapy didn’t seem correct….and this is how I discovered the origin of my problems.

I started visiting many neurosurgeons, but according to them I was asymptomatic, hence they didn’t recommend the surgery in my case. At the very same time my problems were increasing. I was a person with a spirited and energetic character but I became the showdown of myself. Everything became very heavy for me, I started having numbness in hands and feet, especially on the left side, I constantly stumbled which was increasing frequent, I choked while eating.

In 2008, my family doctor contacted me. He asked if I could contact Dr. Crocè, his companion of consultation, who had discovered that he had the same disease. At that meeting we realized we had a very similar picture of clinical symptoms.

After a while he (Dr. Crocè) underwent the surgery of the Sectioning of Filum Terminale by Dr. Royo, with the results that can be read in his testimony. But I was indecisive. My disorders increased, I began to suffer frequent intestinal cramps, apparently without any cause. In an ophthalmologic check-up I was diagnosed with a reduced visual field and I was asked a series of tests in order to assess the existence of other problems. All tests were negative but the vision worsened. My family doctor kept suggesting me to go to Spain after the positive result of the surgery of Dr. Croce but I didn’t dare. At the beginning of last summer I was surviving, my constant sensation of living was of “dragging myself”, I suffered chronic contractures around the thoracic and lumbar segment and the “tortures” that I had to went through to relieve pain helped me only for a few days. I contacted two other neurosurgeons. I did not want to go abroad or have surgery in a foreign environment. This time the verdict was clear. I needed to undergo urgent decompression of the cerebellar tonsils, because my clinical condition had worsened. According to the two doctors there were no surgical indication for the Sectioning of the filum terminale, so it was useless to insist on that.

I fainted 2 times and made up my mind. I contacted Insitut Chiari and on 14^th November 2011 I went to Barcelona.

First it is my duty to clarify that my fears about a foreign environment disappeared immediately. The entire team of Dr. Royo made me comfortable immediately, making me feel at home. The next day I was operated and since then my life changed. Immediately after the intervention all thoracic and cervical pain disappeared. Not to mention the chronic fatigue has disappeared completely since then. Today, after 5 months after surgery, my life has changed profoundly. I have again become the woman of before, I seem to have come out of a dark tunnel and it seems that the last 8 years of my life no longer belong to me. I only have one regret of not having me operated before.

I take this opportunity to thank Dr. Royo, firstly for the deep humanity that characterizes him, in addition for his dedication to study a disease, which is still less understood.

My story

In 2009, after suffering some problems like detrussor dyssinergia, the so called neurogenic bladder and a few nightmarish years with unbelievable pains, headaches, that conditioned me stay in bed for several days without being to move my head for just a millimetre, fainting, etc., I was diagnosed with Arnold Chiari I and a syringomyelic cavity. The surgery was urgent; otherwise the rest of my body, beside the parts that had already lost their functionality, would also be in danger. The verdict was a brain decompression, and I was told that this “is nothing”. After consulting with different neurologists and neurosurgeons, the most renowned in the field and my region, and not only there, the opinions turned out o be conflicting, no one gave us a unanimous diagnosis. ” You don´t have anything, this is all due to other causes”- but which ones? We listened to all the opinions of the best doctors, I underwent all the necessary tests. The results from the evoked potentials were a sign; an ignored sign. No one committed to giving me a cause for the progressive and degenerative malaise I found myself in.

After several intents and vicissitudes, my clinical history ended up with Dr. Royo, who did not promise us any miracles. It was not know whether the bladder issues would be resolved, but the illness would certainly be stopped. The honesty of the diagnosis and the research that my mother, the great protagonist of my illness history, carried out regarding the procedure, its results and the possibilities to stop the progress of Arnold Chiari and Syringomyelia, led me into the surgery room. I think that I haven´t ever remembered any other surgery, or even diagnostic tests, with this tranquillity! The surgeon hugged my parents when he came out of the operation room. I admit that the first five days of the post surgical process were painful, and that I could not lift anything heavier than 500 grams for the first month. The Italian, Belgian and Polish physicians that looked at my wound in the following months were amazed with the perfection with which this kind of procedure had been done.

Today, one year and three months after the surgery, the path is still long, but the results are obvious. The headaches have disappeared almost entirely. There is a certain recovery of sensitivity. After a first period of fainting, this has not happened again since. In the control visit a greater liberation was found.

I don´t want to hide the fact that during the recovery process, which can last for a long time, it is essential to see other specialists, because the Arnold Chiari and the Syringomyelia are neurological pathologies and affect the nerves. A nerve, when it is dead, must be restored.

Dr. Royo is one of the very few specialized and humane physicians that I have encountered during my journey. My body will need much more time to recover from the different misdiagnosis and, above all, from the mistreatments, but I believe that I have found the right direction.

For any communucation: [email protected]

My name is Virginia, I am 37 years old and come from Bilbao. I am telling about my experiences first of all to thank Dr. Royo and Dr. Fiallos as well as the rest of the team for their good way of treating me, their simplicity and effectiveness during the consultations and surgical section of the filum terminale which was done on the 8th of June 2010 and that has relieved the symptoms I had.

Besides my growth having been complex during my childhood due to a delay in psychomotor, deficit in language and others, in July 2004 (30 years old) I went to the Neurologist because I was frequently falling on my knees having one side that went worse than the other without being able to give a correct explanation since I suffered the falls without contortion or stumbling. In the MRI of the 8th of July 2004, I was diagnosed with ARNOLD CHIARI I MALFORMATION but did not receive any explanation about such illness or future evolution.

Time passed by and more different symptoms appeared, such as generalized tiredness, morning sickness, vomiting, constipation, apathy, tics and pain on my left side. During years it´s cause has not been able to justify itself nor its origin and when it coincided with my period it left me confined in bed without being able to move, not even change posture. Even my gynecologist alerted me about it being a possible early menopause; as consequence of the neurologic malformation. In view of this situation, which became more and more painful and persistent, I was prescribed with a treatment for the vomiting, fibromyalgia or chronic fatigue, anti-inflammatories, anti-depressives and tranquilizers.

The first neurosurgeon to which I attended did not opted for any surgery or solution. The Neurologist recommended that I continue the internist indications and medication and that I come back in a year. My situation became unbearable because of the painful episodes and other symptoms, which confined me and affected different aspects of my life.

A family member found the Institut Chiari through internet. We did not have any doubt in consulting my case. The diagnostic was clear, my situation lead me to find a solution, which with the traditional medicine was not given and only offered me pills and more pills without evaluating my quality of life.

On the 8th of June 2010, I went through surgery in the CIMA clinic and my actual recovery is evident. I do not take any medication, only once in a while an Ibuprofen with my pre-period pains. I know the malformation is present but the relief has been conclusive: the nauseas have disappeared, the intercostal left pain and most of the tics as well and the uneasiness, which was constant. I see my future with hope. My degeneration, which my proper illness entails, has maybe been retarded.

Many thank you´s to Dr. Royo and I refer my testimonial hoping that my experience will help others who are in the situation that I have exposed and which today forms part of the past.

Sincerely yours Your patient Virgina.

Hi, my name is Greta De Lucia. I am 12 years old, during January of this year after having had various symtoms and fainting various times during the day, this made my life impossible, they then hospitalized me and diagnosed me with Arnold Chiari I Syndrome.

Here in Italy the only solution for this type of pathology, when being symptomatic, is the decompression surgery. So my parents took in consideration the devastating risks that entails this type of surgery, researching and looking for information, they decided to visit Dr. Royo, who operated on me on the 28th of April. Since that day, my fainting disappeared and my other symptoms get better everyday.

I am very happy, I cannot believe it, but thanks to Dr. Royo, now I can live a normal life just like the other girls. Thank you!

For the ones who need more information, I am leaving my parent´s phone numbers:

TEL. (+39) 3496923245

My name is Maria Concetta Zimbato, I live in Regio Calabria, I am 52 years old and according to diverse specialists who I contacted, I suffer from Arnold Chiari I Syndrome and Syringomyelia. I will try to briefly tell you how I got to Dr. Royo´s hands at the CIMA Clinic in Barcelona (Spain).

My first symptoms started in 1997 with strong pains in the vertebral column and in my legs. This is when my pilgrimage started between various health care centers in my city and other regions. I started diverse analgesic and anti-inflammatory treatments with poor results. Thanks to the X-rays and MRIs we understood that the constant dizziness and strong headaches especially at night when I went to bed or in the morning when I woke up could not be from a simple ear inflammation.

Time went by and I kept having X-rays and MRIs done but no one recommended me to have a brain test apart from an Othorhinolaryngologist specialist from Regio who works in a hospital close to Verona. I then had this test done when I went back home with the diagnosis of Arnold Chiari I Syndrome and Syringomyelia. With this conclusion I went to the Neurosurgery department at the Regio Calabria Hospital to show my new results and get some advice. The doctor who looked at them told me that in Italy the cures were few when it came to rare diseases. I started to go to diverse hospitals, Milano, Rovigo, Boloña…

The different treatments used did not give any good result; on the contrary, as time went by the disease developed itself and I started to have paresthesias in hands and legs, in fact I was losing sensitivity in my hands as well and burnt my fingers without realizing it. My vision and hearing diminished but the worse was that I lost weight because I had lost my will to eat. I went to a center in Perugia to relieve the pains that were more intense everyday, they did infiltrations in hands and cervical region with results that lasted less every time and was an enormous waist of money. I also went to hospitals in the North of Italy but the results were always disappointing, time went by and I didn´t know which Saint to entrust regarding my worsening symptoms. One day, talking to a friend, she told me about her family member which also suffered from the same pathology, so I quickly got in contact with him (it is Dr. Francesco Crocè!) and he kindly explained and put me in contact with Rita Presbulgo, a great person under all points of view who gave me the opportunity to contact Gioia Luè, Psychologist of Dr. Royo´s Institute in Barcelona. The very important day was approaching, I had an appointment for the surgery on the 29th of June 2010; a few days earlier I was visited in Dr. Royo´s institute in Barcelona, which after having personally studied my tests (I had already sent them through e-mail), confirmed the treatment indication by means of the Section of the filum terminale. The surgery time is approximately one hour between entering the surgery room and leaving it; what I noticed right away a slight recovery, the feeling of being lighter, I felt less heaviness on my body, the rope that pulled from my neck towards the bottom that only a person suffering this pathology can understand…

Know, almost a year has gone by and I can say that now a days I feel almost perfectly fine (you cannot completely recover yourself from the disease) although the symptoms I had before have disappeared- However, I have three herniated cervical discs which cause me to have some discomfort and I have recovered the sensitivity in my hands. I do not have that discomfort anymore in the eyes and ears, my life is becoming like before and I can play with my grand children, before I could do it having a hard time. For the moment I am happy with Dr. Royo´s surgery.

I would like to thank Dr. Royo with all my heart and to all his team.

Maria Concetta Zimbato.

Hello to everyone, my name is Omara, I am 14 years old and come from Cartagena. Before anything, I hope that my testimonial will be helpful to all of you who suffer from the vertebral column and encourage you to not loose your hope. If you do not feel well, then I recommend you to visit Dr. Royo who always has a master key for all.

So, I will tell you now about my particular story: More or less when I was 9 years old, I started having back pain, at the beginning, these were bearable and we usually think this happens from a big effort we make or something else but after time went by, the pain increased and prevented me from having a normal life.

Last year, my parents took me to see Dr. Royo so we could have his opinion since my father is a patient and admirer of Dr. Royo and was operated on two occasions and he is grateful to him, you can find his testimonial also in this page, his name is José Juan.

This is very important:

Apart from the back pain and idiopathic Scoliosis, I had a problem that worried me quite a lot. I was bed-wetting during the nights, so my parents took me to a psychiatrist. Dr. Royo then mentioned that if he confirmed the diagnosis with MRIs, he could solve my problem by operating on me. This was something that surprised us both my parents and I, he gave us a possible diagnosis of Arnold Chiari I Syndrome, so he sent me to have MRIs done to confirm it.

What is real surprising to us, is that the MRIs I had done in my city were seen by a radiologist who told us nothing was wrong with me and that I should not worry about anything, that I was fine.

So, we took these MRIs to Dr. Royo and his doubts were confirmed, I suffered from Arnold Chiari I Syndrome. He told me I had to go through the surgery of the section of the filum terminale , which was of minimal risk and that it was all going to be okay. I was very scared but Dr. Royo, his team as well as my parents convinced me to go through this surgery.

On July 8th 2010 Dr. Royo operated on me. The surgery was fast and my recovery went well, what impressed us is that from the same day of the surgery, I haven´t wet my bed at night anymore, which for me was very important. The rest of my problems disappeared.

I would like to thank Dr. Royo and his team for the way I was received by them.

[email protected]

Date of surgery: May 2008

Hello everybody, my name is Rita Capoblianco and I live in Rome. Before telling you my story, I would like to give Dr. Royo a double thank you: first for what he did for me, and second for having offered me the possibility to help, through my testimony, those who suffer like me from Arnold Chiari I and Syringomyelia.

A sincere thanks also, to Ms. Gioia Lue and the whole team from the Chiari Institute of Barcelona. I was about 20 years old when I started having pains in the trapezoids, but only there. I had different types of massages, and then following the years and pain, manipulation, traction, physical therapy, acupuncture, getting only temporary benefits. As the MRI still didn´t exist, I continued having x-rays from which it turned out I had mild scoliosis and cervical arthritis. Luckily, I could still work as a dancer and actress.

When I was about 43 years old, besides the pains in the trapezoids, I also had sharp pains in the temples, especially when I coughed, when I was in places with loud music, when I returned home late at night, or in any case, every time I made an effort. In 2004 I had my first MRI of the neck area, but they didn´t diagnose Arnold Chiari I. Not knowing what to do, I continued having massages and physical therapy treatments; only after discovering the cause of my pains, did I realize the danger that I was running during thirty years of getting the wrong treatments.

In the last years, the pain, especially in the right trapezoid, kept getting worse. I decided to sign up in a gym, hoping that it would help me, and at first, I had the feeling that I was a little better. But after three months the pain became permanent and more and more unbearable. I felt unstable and weak more frequently when I made efforts or in places full of people and with loud music I felt incredible stabs of pain in the temples; if I turned my head to look right or left I felt strong pains in the neck and head and I swayed, my heart beat irregularly and I couldn´t always swallow.

Still with x-rays, manipulations and anti-inflammatory but without any results. A friend, who knew about my constant pains, advised me to have another MRI, and the results said that I had Syringomyelia and Arnold Chiari I.

That´s how my pilgrimage began between orthopedists, physiologists, and neurologists; more medication and useless therapies which, besides, could have caused me bad physical damage. The orthopedist advised me to put a dental prosthesis and he gave me a month´s cure of anti-inflammatory, muscle relaxers, etc. The only result was intoxication and bad dermatitis. One physiologist prescribed integrators and individual posture exercises and another some drops for arteriosclerosis and group posture exercises; the neurologist suggested that I repeat the MRI in 6 months.

I also consulted various neurosurgeons to hear their opinions. The first one, with a smile on his face, told me that I´d have to have cranial surgery; having the impression that he wasn´t that sane, I decided to listen to the opinion of another specialist. The next one advised me to wait six months and then repeat the MRIs, the third prescribed evoked potentials to confirm the need to have an operation and the fourth confirmed that I had to have surgery.

I did the new tests and brought them to the third neurosurgeon who advised me to urgently have decompression surgery, stating that otherwise, I would risk ending up in a wheelchair. Seeing me excessively worried and crying, he added that there was nothing to fear from the operation; they would have to cut a “little lock” of hair, make a “little cut” in the crania and put a little plaque; he guaranteed that the pains would disappear almost immediately. Frightened by what could happen to me if I waited more, I decided to be hospitalized for the suboccipital craniotomy.

The day before the surgery a nurse passed by my room and told me that after the operation I would be brought to reanimation; seeing that all the other patients on my floor returned to their rooms, I began to suspect something. At night a nurse came into my room with three razors in her hands for preoperative hair removal: they would shave half of my head and not a “little lock” like the medical service chief had told me. Faced with my rejection she answered: “You will be months with your head covered with glue and blood and you´re worried about your hair?” I thought I was living a nightmare. During the night, in panic, I had strong spasms in my left arm and a start of herpes zoster and the next morning, once in the operating room, I decided not to let myself be operated on. But, once out of the hospital, I was more confused than before

I made other visits and saw other specialists who told me that I should have had the operation, and at last, thanks to my brother who had searched on the Internet, I learned about the surgery that wouldn´t put my either my health or life at risk: the minimally invasive section of the filum terminal. After having contacted some people who had had this operation, and who said they had obtained obvious improvements, I was convinced that that was the road to take. I arrived at the Chiari Institute of Barcelona, where after a very attentive visit, I was operated on by Dr. Royo; the next day I returned to Rome.

More than two years have gone by and the pains are increasingly diminishing. Now I can once again stay in places with loud music, or in places full of people, without noticing pain or swaying; I have reacquired strength in my extremities, feeling in other parts of the body and I can do everything, though at times, when I´m more stressed or tired, my trapezoids harden, sometimes I have a little headache and dizziness, especially if I put my head back. One month ago I could even dance: I cried for joy. As seen through the MRIs, the two diseases have stopped, like they had assured me, and this was the most important thing. A few years ago, at the most difficult moment of my life, a kind and honest Italian neurosurgeon told me: “We only have one life, we are the ones who have to decide what to do with it. You don´t have a tumor and you´re not sitting in a wheel chair, so think about it a million times before letting anyone open your head, try everything possible and, only when you can´t anymore, chose this surgery.” That day and especially thanks to him, I decided not only to live, but to live “well”.

Email: [email protected]

I am 46 years old. In the year 2005 I started to suffer from headaches and vertigo The pain was in the nape region, I felt pressure in the temple which irradiated to the eyes. Then I realized I could not take the subway, I didn´t feel well when I did. I went to see a neurologist and indicated me to have an MRI done. The report said: a variant of Arnold Chiari I. Descent of 5 mm of the cerebellar tonsils, degenerative dystrophic changes in the cervical region. They prescribed me medication in the form of pills and intravenous drip. By misfortune, the pain grew stronger every time, tinnitus and a cold feeling added to it. I was cold even in summer time. My left leg and arm went to sleep. The MRI from 2008 showed the progression of the disease. The Cerebellar tonsils descended to 9 mm and a herniated disc showed up at the sacrum region. In the year 2009, a teacher at the Brain Institute in San Petersburg suggested me a surgery which consisted in cutting part of a tonsil and etc…I refused- I decided to live life with it.

Suddenly, I saw on Internet an article about the Institut Chiari of Barcelona. My husband and I decided that this was my opportunity and so we went. I had surgery on March 2nd of 2010. On March 5th I could already walk around Barcelona. I felt a relief: my head and neck didn´t hurt anymore. My back got straighter. My hands got stronger, even my skin color changed, before the surgery it was a grayish yellow. My voice sounded richer.

I want to thank a lot Dr. Royo, Doctor Marco and all his team.

Sincerely,

Svetlana Fumina

Тel: +7 921 743 53 43 E-mail: [email protected]

Date of the surgery : January 2010.

After three months from the surgery by Dr. Royo in Barcelona, I´m writing with the intention of helping people who need to read testimonials in order to feel themselves more confident about this treatment.

I want to thank Dr. Royo and his precious team, because thanks to his technique my pathology has been stopped in time. I have suffered during approximately 10 years from acute, intense and persistent headaches, strong pain in my legs, which obligated me to rest during the day and pain in my arms during the night with as well pins and needles. These symptoms alternated during time. I consulted various specialists in Italy including the chief of neurology service Dr. Mauro Minervi and Dr. Octaviano, who practice in the “Don Uva” clinic of Bisceglie (Bari), whom I will never stop thanking for having diagnosed my case of Arnold Chiari I Syndrome and Syringomyelia as well as for having guided me to Dr. Royo´s center in Barcelona.

After having collected all necessary information on the pathology and about the surgery of the section of the filum terminale, I understood that I could not loose any more time. I went through the surgery on January 19th 2010, recovering my thermal sensitivity after little time.

In conclusion, I hope for future recoveries, but if this wasn´t the case, I am still happy that with this surgery the disease is not able to worsen.

Lucia Ciciriello E-Mail: [email protected]

(We are here reproducing an open letter from Dr. Francesco Crocè, a patient and physician who underwent the Sectioning of the Filum Terminale procedure. You can also see his testimony on this website – section “Testimonials”)

Three years after the surgery of the Sectioning of the Filum Terminale carried out by the Institut Neurologic de Barcelona, directed by Dr. Royo Salvador, and reason for the creation of a foundation, AI.SAC.SI.SCO, which takes care of the “filumtized”, I have the moral obligation to inform all the affiliated, and moreover, all the patients affected by Arnold Chiari I, Syringomyelia and Scoliosis, of the clinical and radiological results of my personal experience as a patient/physician; hoping that this letter will help those who have confusing ideas about his matter.

Three years after the surgery, I can confirm with clinical and radiological certainty that the Sectioning of the Filum Terminale has worked to make disappear symptoms like: left interscapular pain, reduction of force in the upper right extremity, paresthesias in the lower extremities, nystagmus, nocturnal apneas and mental confusion.

The only symptom still present is a pain in my calves. None of the neurosurgeons consulted, including Dr. Royo, have been able to give me an adequate scientific explanation for this.

Regarding the radiological evidence, there has been a relocation of the cerebellar tonsils, the medullary cone and a reduction of the extent of the cervical syringomyelic cavity.

Despite such clinical and radiological evidence, I still encounter skepticism from fellow neurosurgeons, except for a few open minded, and this unfortunately explains the difficulties of the people who call me to ask for clarifications regarding these pathologies.

In fact, I would like to tell all patients that the Sectioning of the Filum Terminale by neurosurgical technique is done exclusively by Dr. Royo in Barcelona, and that in my experience, and not only mine, this procedure is completely free of risks.

I invite you to not trust those who maintain that they do the same surgery.

I also invite you emphatically to not allow that your skull gets opened – it is not useful and in the majority of the cases the pre-existing clinical situation even worsens.

Now then, I wonder, how it is possible to have doubts whether to have ones skull opened (with the implied risks: death, paralysis, etc.) and to have a simple cut at the coccyx level; unfortunately the explanation lies in what I mentioned before, my colleagues are still skeptical also in the view of clinical and radiological evidence and this is unfortunately transmitted to the patients.

Then there is the financial part, which might be the most unpleasant obstacle.

I hope that the creation of this association will be able to help people to solve this problem.

Please excuse me, but I have willingly had to be synthetic and avoided technical/scientific terms so that everyone can understand me.

I HOPE THAT THIS LETTER HELPS ALL THOSE WHO HAVE CONFUSING IDEAS.

I OWED THAT MUCH.

DR. FRANCESCO CROCÈ

Date of the intervention: December 2009  

In October 2009, I was diagnosed with the Arnold Chiari I Syndrome. In my profession, I am a lawyer and a law professor in Lyon, France. I would like to share this testimonial in relation with the suggested technique by the Institut Chiari de Barcelona to cure patients suffering from Arnold Chiari I syndrome. I wasn´t given any treatment in France to cure this disease. (Only a symptomatic treatment and very little efficient against pain).

Then, I contacted the Institut Chiari de Barcelona to find out if in my case I was indicated for the technique of the section of the filum terminale, a minimal invasive technique and with a minimal post-surgery follow-up. The surgery took place in December 2009 in the CIMA clinic of Barcelona and was practiced by Dr. Royo Salvador from the Institut Chiari de Barcelona.

I am patient number 300 to benefit from this new technique. In relation to the surgery benefits I can testify them since they are quite important. After two months from the surgery I can say that all my symptoms have disappeared. I will list my principal symptoms which have disappeared completely right after the surgery, starting by the most disabling: – Unbearable and continuous headaches, without being able to calm them with painkillers; – Permanent fatigue with the necessity to take numerous naps along the day; – constant pain and stiffness in the nape of my neck (impossible to turn my head vertically or horizontally); – pain in back and shoulders; – difficulty in breathing (during 6 months since June 2008 I had almost permanent cough and since then with quite a lot of frequency), pain in my chest (a weight); – pain in my right leg (impossible to lean on it and to walk normally); – other symptoms: tension in my face and limbs, teeth grinding at night, difficulty to keep my eyelids up… My welcoming at the Institut Chiari and the CIMA clinic was very warm and very professional (notably in the precision of the diagnosis). The places I stayed at and the room at the clinic is well taken care of and pleasant. The staff is always attentive. I spent one night at the clinic after the surgery and was able to go back to France by plane. As an anecdote, I can say that after the clinic discharge, I took a walk around Barcelona and went out to dinner with my friend that accompanied me, who also went through this surgery around two years ago.

The post-surgery was only a small discomfort during the 10 following days at the sacrum level at a sitting position or half sitting. The scar is about 3 cm but in my case after two months from the surgery, it is invisible (some months ago I had a freckle removed and the scar now is visible and the one from the surgery of the filum terminale y imperceptible).

With this, I give myself permission to testify that all these symptoms have disappeared since the surgery of the section of the filum terminale practiced by Dr. Royo, which brings beneficial results and unavailable (and not proposed in France) to patients suffering Arnold Chiari I Syndrome. To finish up, I have realized that the earlier the patient is treated, more spectacular are the results that can allow to live a normal life, therefore, it is of interest to propose this surgery to patients who are affected as soon as they have been diagnosed. I give a thousand thank you´s to Dr. Royo and all the Institut Chiari team! I wish them a long life, a good future other than a lot of perseverance in their profession.

You may contact me through email: [email protected]

Date of intervention: September 2009

Date of intervention: June 2009

I waited for many years to find out to what corresponded my symptoms that sometimes seemed to be a mixture of causes and different pathologies, more frequent each time. I am not be able to count how many doctors I had to go through before getting to a true diagnosis, how many times I have been ignored because no one listened to my problems with real interest; all the doctors attributed my discomfort to neuron-vegetative disorders: “you see you don´t have anything? You have to be strong and try to overcome these disorders with willingness, which do not have anything organic.” I felt like I was unbalanced, that I could not control my emotions and was always in search of doctors and expensive treatments around the peninsula, which often gave to worry about and disturbed family members. Fortunately my husband and mother had enough patience; on the contrary, they always supported me.

When my neck problems worsened due to a traumatism from a light car collision, I was asked to have an MRI done and at last I was diagnosed with Chiari I. This is how we understood where all those problems were coming from all along the course of my life.

Date of intervention: July 2003  

Since I was a little girl I already suffered from back pain and cervical contractures, this is when my ordeal with doctors and clinics started.

They simply did X-rays to me, nothing else and the diagnosis was always the same, contracture caused from my work. After a few years, I even had to wait to have a visit for 9 months, with the hope of finding a solution. When the day of the visit arrived, as always, a simple X-ray. Once he had it in his hands, the doctor literally told me he did not know what to say to me. I asked him to have more tests done on me and he answered saying that if with an X-ray there was nothing coming out, I did not need to have any other tests done; I came out of the visit crying with rage and impotence.

As time went by, I felt worse every time, until one day I got a cervical blockage like I had never had before. When I went for my sick leave to the “cap de Sant Andreu de Barcelona” Doctor Sancho attended me; he did not even look at me in the face, he simply told me I had to lose weight; this way I would feel better and that I should not return to him, that if when I took off the neck brace they had given me from an urgency it did not hurt I, should go see a Rheumatologist. The day arrived and of course I had to go and see the other specialist. His version was that I had different fibromyalgic spots and a depression; the last thing wasn´t surprising… Years go by and worse every time: dizziness, headaches, vertigos, fatigue, etc… not being able to work outside the house and limiting myself to doing household work.

Email: l [email protected]

Date of intervention: February 2009

Hello, I am Angel Fernandez, I am 27 years old, I live in Valencia and I am Dr. Royo´s patient who suffered from Arnold Chiari I Syndrome, cervicodorsal Syringomyelia and idiopathic Scoliosis, but I was lucky to have found out about this before I even noticed any symptomatology.

In the year 1994, they redo all the tests and again observe a dilatation in the third and lateral ventricles. They compare with the last tests and have a comparative study and if they clinically consider it indicated; they could do another control after a year.

Date of surgery: February 2009

Hello, my name is Sandra, I am 11 years old and I come from Mallorca (Balearic Islands). A year ago I was diagnosed with Arnold Chiari I Syndrome. Everything started when I was 2 more or less with headaches. At first my parents didn´t take it seriously since these didn´t occur very often. After a few months, the headaches started to get more persistent, so my parents mentioned it to the pediatrician whom told them this was caused by a hormone change or a tensional headache. The pediatrician did not think it was too important since these headaches were not very constant, very few on the weekends and either on vacation, so my patents though that these were really tensional ones due to school pressure. My parents started to worry when they noticed that these became present on a daily basis being either on a weekend or on vacation. This is when they insisted for me to have an MRI done to make sure everything was all right. When they got the results, their nightmare started. (I say nightmare, because I was not informed at any moment about my disease, I was told all about it the day before we went to visit Dr. Royo).

The MRI report said, “Chiari type I anomaly” with an important descent of the cerebellar tonsils into the posterior face of the spinal cord at the level of C1 and C2. I think we went to all the neurosurgeons on the island and all said that I had to have a tremendous surgical intervention, which consisted of a decompression at the base of the cranium. My parents considered this an atrocity because of the danger of it, the doctors as well did not assure us anything, and they only said that there could be consequences due to all the nerves that pass through this region. They told us this surgery even had a risk of mortality and anyway, the headaches could anyway stay the same and that the surgery had to be done before a maximum of three months.

The pediatrician advised us to wait a little, since the only symptom I had were the headaches and that the surgery was very risky and not safe. I thank this pediatrician, which in all time told my parents to not make fast decisions. Thanks to this, my parents looked up on the Internet and found Dr. Royo´s clinic, which gave us another alternative to that other very dangerous surgery. His technique was the one of the section of the filum terminale, a minimal invasive surgery, which lasted for about 35 minutes and not aggressive at all. The results after the surgery were immediate, the headache had disappeared and the following day I went back home with no problem at all, bless this minimal invasive technique with such good results.

Today has been a year since the surgery and I can say that the strong headaches I had have disappeared completely. Nowadays, if I ever get a headache, they cannot be compared with the ones I had before, since they are completely different and much less intense. I had also recovered sensitivity in the abdominal region and strength in my hands although I did not know I had these problems until my first medical visit with Dr. Royo and he did a neurological exploration and showed us.

Also, I would like to mention that my memory has improved, if before I used to score good marks, now I score even better marks all because of the lack of this constant pressure in my head, I can’t feel any better!

I thank once again Dr. Royo and all his team, because they make people forget that these people had been suffering from any disease.

Sandra

Tel: (+34)971605932 – (+34) 629542075 Email: [email protected]

Date of the surgery: January 2009.

Hello! My name is Eva Dominguez and I am 16 years old. Everything started during one afternoon of March 2005 when, my ballet teacher noticed I had something that was not right with my back position. When I finished class, she called my mother and told her to take me to the doctor. When I was 12 I was diagnosed with idiopathic Scoliosis. Every so often I had to go to the hospital to have X-rays done to control my back problem. As I kept noticing I was getting worse, they told me to wear a corset to avoid having it increase in curvature. I had to wear it for 24 hours a day. During a visit control, my bone specialist suggested a surgery, which consisted in opening up my back and fix the vertebrates that were affected and put them together with a titanium bar to eliminate the curvatures.

As we thought this was not the right solution because it didn´t guarantee us the cure, we looked through the Internet and this is when we found the Institut Chiari. In December 2008 I went to Barcelona to Dr. Royo´s office. When I had my images done to get a diagnosis from him, he also discovered I had Arnold Chiari I Syndrome. It was then when he informed us about another type of surgery much less aggressive, which consisted in sectioning the filum terminale. With this technique, the progression of both diseases would be stopped.

After a short period of time from the surgery, I started noticing some changes. The headaches, shoulders and neck pain had disappeared; I recovered the strength I had lost in my arms as well as my coordination problems. In conclusion, for me the experience was totally positive and I hope sincerely that my testimonial will help other people with Scoliosis and find a solution or at least, listen to a second medical opinion. Thank you for making my disease get better…

E-Mail: [email protected]

Date of intervention: November 2008

Hello my name is Maria Teresa Sanz Belomonte, I am 45 years old, I suffer from Arnold Chiari I Syndrome and this is my story.

Since then, it has been a constant beginning of treatments (pills), X-rays, MRIs… but always for my back: dorsal, cervical, lumbar and sacrum. They did find discopathies but were not important enough to justify the symptoms that I suffered, so the solution was to keep taking pills.

Date of the surgery: July 2008.

Good morning, my dears: My name is Giovanna Porro, a 46 year old Italian girl and I would like to tell you my story. I have already been a very thin girl and when I was little girl I always suffered headache attacks. I was a very good student; although when it came to sports I was afraid of my problems with motor and activities and problems with coordination. At the age of 18, after some driving lessons I got my drivers license but quickly began having problems when driving and finally had to stop using the car. Between frequent migraines and easy fatigue, my life took place between school (I am an elementary school teacher) and home, without being able to have too much fun. In the year 2005, I started to notice symptoms as of parenthetic type in my right and left hemi body and tongue. I went to the “San Gerardo” hospital of Monza, where I had a CAT done of the brain, which came up to be normal and gave me the clinic discharge that same night with the diagnosis of paresthesias referred to somatization.

They suggested me to visit a neuropsychiatrist and proposed a treatment with Bensodiazepine for an anxiety syndrome. After a partial remission of the symptoms; in January 2007 the situation worsened notably. Shivering started to appear in the upper limbs, which kept me from being able to write, Dysarthria and I could only walk around with the help from someone. I was hospitalized in the “S. Gerardo” de Monza hospital and I went through different exams like an MRI of the brain and of the spinal cord, which resulted being descent of the cerebellum tonsils 9 mm into the foramen magnum. (Arnold Chiari I). The complementary images excluded the presence of syringomyelia cavities in the spinal cord. Under the evaluation of a group of neurosurgeons, they did not believe that this needed a type of surgical solution. Since the day they gave me the clinic discharge after 15 days, the Dysarthria and walking problems persisted. They suggested physiotherapy treatment; the situation got lightly better, but still was not able to go back to work. In the month of May 2007, I was hospitalized in the “Besta” of Milán, where they confirmed the Arnold Chiari and gave me the clinic discharge with the following diagnosis: “the patient presents Ataxia with acute début of undetermined measure”. Particularly, the MRI anomalies of the (Arnold Chiari I) do not seem to justify the patient’s symptoms”. I found myself totally in the dark! ¿What could I do? With a lot of willpower I continued with the physiotherapy and in the month of September 2007 I went back to the school. Thanks to my colleague and student’s collaboration and of my director’s sensitivity, I returned to my teaching, however, with a lot of physical difficulties, frequent migraines and motor disability. In the month of Mars 2008 a dear Spanish friend of mine told me about Dr. Royo; so I sent the doctor my story to have his opinion. He very kindly answered me and said he could treat my case. I got an appointment with him in the month of July. We traveled to Spain with our heart full of hope. Our meeting with Dr. Royo, the psychologist Gioia Luè and all his team was very exiting. It was like talking to a father, he explained the importance of having this surgery to stop the progression of the disease and avoid the worst. During the afternoon, they had me going through various pre surgery exams and on the following day, he operated on me. The surgery was with general anesthesia and took two hours. On the next morning, when I stood up, I immediately noticed recoveries: I could walk without having to look down to the floor like I had to before, and my plantar reflexes had gotten back to normal. After almost two years, I can say that my quality of life has gotten better notably. I go to work regularly, my hands don’t shake anymore and my physical resistance has gotten better. Only sometimes I can notice some vertigo and small paresthesias. My thankfulness with all my heart to Dr. Royo and Gioia, to angels who have given back us patients a new life, now it is for us to give it sense again.

The best way is to keep in contact and support the Chiari Foundation. With gratitude also to my dear friend Rafa, without his help I wouldn’t of had enough strength to face this marvelous adventure. TOGETHER, DEAR FRIENDS, WE CAN MAKE IT!!! A warm hug!!!

Giovanna

Phone number: (+39) 3421342525 

E-mail: [email protected]

Date of intervention: October 2007

I am a 48 year old doctor.

I decided then to have an cervical MRI done, that unfortunately evidenced Arnold Chiari I and a small Syringomyelic cavity in C5-C6 and a Herniated disc in C5-C6.

Date of intervention: April 2007

Osio Sotto- Bergamo Italy- January 8th of 2009. Testimonial of the section of the filum terminale. I am a 48-year-old woman. Since my childhood I have suffered from headaches and once reaching adulthood, everything got worse. In the year 2000 I started to cough, which caused the headaches that got worse, adding Cervicobraquialgia. I also had pain in my right arm and the medical visits did not give me any sufficient explanations. This happened until October 2005, when Dr. xxx from the emergency service gave me a petition for an MRI to make sure there would not be any cervical hernias causing these pains and other problems that meanwhile had appeared, such as: depressive physical fatigue that increased taking only short walks; instead of feeling my legs I noticed two blocks of cement that did not collaborate; I tripped, I had a burning sensation, difficulty in walking on irregular surfaces, had loss of balance and vertigo; I often had things falling from my hands, as if the pressure or the force to hold things had to be an effort of concentration; my vision was sometimes blurry, with difficulty focusing and intolerance to a shining light; Paresthesias in the extremities, pins and needles and numbness. Problems swallowing, a sensation of suffocation, nocturne apnea, moderate but bothersome urinary incontinence, bowel movements produced discharges in my head and gave me a sensation that the sphincter muscules did not collaborate; if I got mad or cried, it gave me a horrible headache like a decompression and spasms in the head and cervicals; alteration in heat and cold, muscular spasms, occasional pain like electric discharges, decrease in sexual interest, gastro reflux and high pressure. The result of the MRI showed I had a cervical herniated disc (C5-C6) but evidenced a Chiari I Syndrome with hydro- Cervical Syringomyelia (C3-D1). I went to a neurosurgeon of “Ospedali Riunity” of Bergamo. Doctor xxx, indicated the Occypito-Cervical Decompression surgery: they had to break the occipital bone, practice a Laminectomy of the first cervical vertebrate and surgery on the dura mater, which is one of the three strata of the menix. Before, I wanted another opinion and the neurosurgeon from the Insitute Besta of Milán, Professor xxx, told me practically the same: Sub occipital Craniectomy with dural plastia. I thought that if I didn´t go through this surgery I would risk becoming paralyzed, if I did go through it I could hope not to, but it was not sure that it would be possible to stop the negative pathological process… painful and risky intervention. I then spoke to a neurosurgeon, Dr. xxx, so he would have me “under control”, avoiding the intervention but he also strongly recommended that I go through the surgery, given that there was medullar damage.

Date of intervention: March 2007

Hello, I am 21 years old and a patient of Dr Royo, that suffers Arnold Chiari I Syndrome, Syringomyelia and Scoliosis and with luck i found out that i had all of these before noting the symptoms.

From there on they sent me to a neurosurgeon, they examined me and confirmed the diagnosis, i didn´t have no other symptom and all the tests came back perfect. Speaking with other people about the topic, they recommended us to go to Vall D´hebron hospital. The new Doctor recommened not to wait and to operate as soon as possible. After a long time waiting at last they called me, and they did tests, the doctor told me what the operation entalled and that the whole process would take 4 months.

Data of intervention: February 2007

I am Mercedes Reverter Segarra of 61 years, 35 years ago I suffered backaches, firstly it was only lumbar pain and even remaining myself in the bed. Later the thing was as well complicating itself also with cervical pain. I went to the doctors, whom which gave me medication for the pain and they said that I had to have patience and to acustom myself to the pain because it was artrosis and that there wasn´t a solution. I time was passing , every time i felt worse, with more pains, and they were a lot stronger everytime and I needed more time to recover. 5 years ago I could no longer hold the pain so I began to go to all doctors, who were saying to me either by insurance or by paying and nobody gave me a solution. By this stage i was desperate because the pain did not cease, it took away my desire to live, i didn´t have hope i only wanted to die , because of the way that I was living wasn´t the way to live.

My brother had been operated on with cervical hernia in Barcelona by Dr. Royo and he said to me that why don´t i see what the Doctor has to say and without thinking twice i went. Dr. Royo kindly told me that we needed to undergo some tests and that later we will speak, much to my and my families surprise was when he told me that i had 4 problems. I had two cervical hernia discals very advanced and that it was pressing on the spinal cord. Also filum terminal disease from birth, a lumbar pinch and finally, a loss of mobility in the right arm. I was so shocked as well as my family but at the same time we were glad because we finally we knew what i had and that it had a solution, to operate.

Date of intervention: November 2006

Those that have past through this experience we want to say so many things that refer about the same thing, but we don´t know where to begin.. I am 48 years old and have been having headaches for almost 4 years, I don´t remember, a year and a half ago I went to the Social Security Neurologist and they did a Magnetic Resonance on me, of which they didn´t tell me the truth, they informed me of Musculoesquelética Malformation, which does not have anything to do with Chiari, I took medicines that didn´t work on me.

Well, the story is that I arrived at home and I turned on the Internet, much to my surprise is when I saw what I was suffering, I was astonished, and clearly I started investigating until I found Doctor Royo Salvador, clearly, if he opens a door in your life, the hope of getting myself well without an aggressive and complicated intervention like how they open your head. The first thing that I did was got in contact with a female patient already operated and I felt good with everything that she explained to me, and then I called The Doctors Clinic and I prepared everything to go and be intervened.

Date of intervention: July 2006

I was 65 when in May 2005 I began to have triggering sharp pains incide the head, like electrical shocks, that radiated through the posterior part towards frontal areas and the eyes, its duration was for 15 seconds – 20 seconds, as as months went by the pain accenuated and the pains were alot stronger and repetitive. Soon I began to notice that sometimos I found it difficult to swallow food, when the month of December 2005 arrived, like how everything normal happens to me, I went to visit a doctor and he said dto me that it could be cervical arthiritis, nervouseness, anxiety, they prescribed me antiinflammorty and tranquilisers, but the pains didn´t go and everyday I was getting worse, to notice that the medication wasn´t having affect on me, in January 2006 my pains were accentuating, they were more repetitive, strong and very unbearable, later I then realised that these excuses were exacerbation ( that they begin) with a cough, sneezes, to raise and coger the head abruptly, if I spoke with a loud a voice I heard sstrong noises, when I had to g oto the bathroom if i had to force myself, if I had to move my head side to side to try and see something then is when it started, it was horrible what was happening to me.

The Neurologists doctors that I went to every single time they began to giveme tranquilizers and change of traditonal medicine, and I took all of them, al the doctors know of the medication that I was taking. I have always said the truth without lying to anybody, all of them agreed to the medication that I was taking, waiting for one of them to take effect. Most of them where tranquilizers, what did happen was that sometimes they relaxed me just for a short period of time but I was feeling that I was like drugged. It wasn´t me, if I had to g oto the street somebody had to accompany me, I wasn´t secure of myself, and every time I had to take more medication if I didn´t want the pains to be as strong as they were. I even remeber that I did g oto check my sight and my ears. Everything was correct. Then they did a TAC and nothing visible important was seen, and then they sent me to the Social Security Neurologist, he changad my medications but because they didn´t respond, they then did a MRI and unfortunately social security employees were on strike and I couldn´t wait no longer with the pain that I was suffering, and what I did was take my own cause on.

Date of intervention: June 2006

Next I detail the symptoms that I was noticing after the operation of Filum Terminal, things that before made my daily life difficult.

Now in relation to my state of mood, it is much better, I leave and I enter constantly,I enjoy myself and work like a volunteer in an association that I preside and have done for some time. I´m not sure where i can reach in recuperating myself, but I have the security that I won´t allow it to win me over by any means. In addition, the sport that I´m practicing or exercises, I have done it as a part of daily life, and they are fun, they help me to feel better, and if everytime I can do more things that reinforces the hope and the conviction in one´s own capacities.

Date of intervention: June 2006

Ever since I have reason for use, I remember the strange sensations and annoyances, which in that time, came up to a medical conclusion. I also have coming back to my mind the abstention of action sports; the dizziness in the gym classes as I made determined movements. I had difficulties in paying attention and memory; these became more evident during the sudden weather changes like autumn and winter time and unjustified periods of anxiety. My head goes over these things and understands that these things and more have always been present and although there were moments with some improvement, they remained latent, watching, and insidious with a “coming and going”.

In summer 2004, after having felt even more this intense fatigue and an inappropriate psychophysical reduction, I had my first syncope (fainting), that followed a few more during six months, without any vital fact that provoked it. They appeared anywhere (an automatic cashier, a coffee shop, a store, getting milk from the fridge) and more than once I received an impact against the floor when I fell. I understood that some Syncopes happened with determined sudden neck movements or walking fast although not always. I could perceive them because I had time in a sequence of slow motion.

Date of intervention: December 2005

It was Tuesday 13th, just like today, when I went in the surgery room so that Dr. Royo could cut my filum terminale. After he cut it the changes were not spectacular, which I didn´t expect them to be but at least I wasn´t fooled. The first change was right after leaving the surgery room, my “babinski” was normal. The next day, I was able to stand straight went I got up from bed for the fist time after such a long time.

In my case, these changes have made my life easier and only for this, it is worth it trying it. If you need me, if you want to ask anything or simply get to know me, here is my e-mail address: