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]

Date of surgery: 16/02/2017 Filmed: 20/02/2023

“My name is Priscila and this is my 12-year-old daughter Luiza. We are from Brazil. When Luiza was 4, she was diagnosed of cervical and thoracic Syringomyelia, no Chiari, but with a lot of symptoms. Due to her urinary incontinence, tingling in her legs and difficulty when walking, we realized there was something wrong. They ran the MRI tests and thus diagnosed the Syringomyelia. We then started looking for treatment, since Luiza’s syrinx was growing significantly and her symptoms were getting worse, limiting her quality of life.

Today we are at the Institut Chiari to let people know that this treatment is really minimally invasive and brings a lot of benefits. So, do not hesitate in travelling to Barcelona and undergoing the surgery.

Luiza is now 12; we are here at the Institute to share our experience. She is currently in her 10-day postoperative period due to another condition related to her thorax, that is why she is wearing a corset and in a wheelchair. She can actually walk, go to school, have a normal life and practice sports.

We are here also to see the comparison between the 2017 preoperative images and the latest ones. Luiza’s largest syrinx was in the thoracic spinal cord and it has almost disappeared. We are really happy about that, we already knew that she had improved, since approximately the 95% of her symptoms disappeared after surgery. It has been a very quick recovery!

We cannot keep to ourselves such a positive experience with the Institut Chiari, their work and, above all, the benefits the surgery brings. When I brought Luiza here, I only expected the syrinx would stop growing and now I’m realizing it has even shrunk and almost all her symptoms disappeared.

If this condition has no cure, this treatment is the cure. It provides a better quality of life to those suffering from the symptoms of Chiari, idiopathic Syringomyelia and idiopathic Scoliosis and with the indication of surgical treatment. The Doctors at Institute Chiari review every single case to make sure the patient is a candidate for the intervention. Do not hesitate in undergoing or having your child undergo the surgery, because you will benefit from it.”

At the end of the video, Priscila asks her daughter: “isn’t that true, Lú?” and Luiza nods. “Have you improved a lot?”, the patient nods again. “Say hello”, asks her mother and Luiza greets with her thumbs up.

Email: [email protected]

Surgery date: May 16, 2023 Filmed: May 24, 2023

Caroline and Anna are triplet sisters from the US, both diagnosed of Arnold-Chiari I Syndrome.

A year ago, Caroline had decompression surgery, followed by the worsening of her symptoms and the appearing of new ones, like seizures, migraine, muscle weakness that made it almost impossible for her to walk up the stairs.

Despite not having undergone decompression, Anna has been suffering from very terrible migraines, headaches, nausea, pins and needles in her hands and feet for the past 4 years.

After Caroline’s case had been reviewed and she had been invited to Barcelona to undergo the minimally invasive Sectioning of the Filum Terminale, Anna decided to send her scans too and was offered the surgery as well. On May 16, they were both operated on at the Institut Chiari de Barcelona.

They have just had their wound check-up at the Institute and, with this video, they wish to express their happiness and amazement in seeing so many improvements after the intervention. “It had been so long since I knew what a healthy person would feel like”, said Caroline and for Anna “it’s just been amazing to see an afterlife that I used to have come back and I’m very excited for the rest of it”.

Surgery date: 30/03/2021 Filmed on: 21/04/2021

Hello! My name is Cristian and I am in Barcelona because I underwent the sectioning of the filum terminale. I am from Ecuador and I was diagnosed with Chiari type I. My symptoms started at the age of 30 when I started having severe headaches, dizziness, arm pain, tingling, back pain and then, the pain went down to the lumbar spine.
I visited different neurosurgeons in my country and the solution they gave me was that I had to have neck surgery. This worried me quite a bit because it is a head surgery, so I decided to do a little more research and looked for people on social media who had the same Chiari type I diagnosis.
Researching in the groups that I found about this condition, I was recommended to ask for a remote diagnosis here at the Institute Chiari de Barcelona. I sent them my scans by email and they provided me with an indicative diagnosis. Then I had the opportunity to travel to Barcelona, they examined me during the medical consultation and after a year I was able to travel to undergo the surgery of the sectioning of the filum terminale. It has now almost been a month since I underwent surgery and I can say that I have improved in some aspects: some of the symptoms that I had disappeared – such as the lower back pain -, I no longer have dizziness, the headache has also improved, there is still a slight pain in the thoracic spine; but I am only a month in from surgery and I prefer to wait and see how I continue to improve over time.
I recommend this new surgery that is not performed on the head but in the lumbar area, which, according to my  research, is less invasive – which is why I decided to undergo it – since undergoing a brain surgery worried me a lot. This would be all I can share with people who have this disease: I encourage them to request distance guidance and come here to undergo surgery.

Surgery date: 10/01/2023 Filmed on: 20/01/23

Hello my name is Amanda McDonald. I’m 28 years old and I’m from Idaho, United States and I have struggled with symptoms from Chiari malformation for over 12 years.
You know, I dealt with pressure headaches and neck pain and, just you know, dizziness memory issues, breathing problems. Definitely in the last year, it’s gotten worse I was diagnosed 3 years ago and they recommended decompression surgery but it was canceled because of Covid and after they suggested rescheduling. I decided not to because I was concerned about, you know, the complications that can happen with that surgery.
I just kind of waited and I was a part of a lot of Facebook groups about Chiari and someone told me about the clinic here in Barcelona and so I got in touch with them and sent them my MRIs and I’ve just had an amazing experience with the staff and the doctors here. It has just been incredible.
About seven months ago I wasn’t able to walk and I have to use walking sticks. I was in a wheelchair. When I came to the clinic I was in a wheelchair. I could only walk like a couple steps without help and I couldn’t sit up straight and I just felt terrible, like I could barely, you know, carry out a conversation because just the overstimulation of like talking to people and noise and light, it was just too much.
But pretty much right after surgery the pressure is already much better and my thinking is much more clear and I don’t get overwhelmed this quickly. Pretty much the day after the surgery I started walking again and I’ve never been able to, like, sit up straight and it’s just amazing.
So, I’m just so thankful to God and for, you know, this Clinic just how much effort and time that they put in the researching this Filum Disease and just that they have a surgery available.
So, I would highly recommend anyone with these conditions, you know, the Filum Disease or Chiari Malformation to come here and yeah just get surgery because it’s really blessed me a lot so, thank you!
Email: [email protected]

Surgery date: 14/7/2016 Date of patient testimonial: 16/2/2023

Brazilian patient Andressa Regina Eger contacted the ICSEB team in February 2023, quite surprised after having her last MRI scan. “I went to my doctor in Brazil, who told me that my last tests did not show Syringomyelia,” she said. After a detailed study by the ICSEB team, it was confirmed that, after 7 years, her Syringomyelia had indeed disappeared.

Surgery date: 15/09/22

Surgery date: 21/05/2019 Filmed: 04/07/2022

Hello! We are Iker’s family. We are from La Gomera, Canary Islands, where there are not all the medical resources one could wish for. In February 2019, thanks to a podiatry examination, we were able to see that he had a scoliosis that had not been found until then, when Iker was already 6 years old. As a result, his physiotherapist requested an MRI. Thanks to this, he was diagnosed with Arnold-Chiari type I Syndrome, Syringomyelia and idiopathic scoliosis. Then, we began a journey to find information. From the very beginning, the neurosurgeon recommended undergoing a suboccipital craniotomy, which we flatly refused; then we started looking for information on the Internet, trying to find a solution, until we found the website of the Institut Chiari de Barcelona.
Without hesitation, we got in touch with the institute and three months later we were in Barcelona to undergo surgery. We must say that he had no apparent symptoms, only scoliosis. We had the consultation on a Monday and he underwent surgery on Tuesday. Unfortunately, with the outbreak of the Covid19 pandemic, we could not return to Barcelona for the check-ups. The only thing that got a little worse was the scoliosis, which we were able to solve with the physiotherapist in La Gomera and we were able to continue the treatment from there. We kept in touch with the Institute without any problems and we came for the check-up three and a half years or so after the surgery. The images are very satisfactory, his tonsils descent has improved, his Syringomyelia has improved, Iker lives a normal life. The scoliosis did get worse at first, but now it maintains quite stable with the brace and we are moving forward. We are very happy, very grateful because God has put the Chiari Institute on our way.
We will always be very grateful to them. We will continue with the check-ups every three years but, as you can see, he can lead a normal life and is a fully active and happy child.
[email protected]

Surgery date: 23/3/2021 Filmed: 2/5/2022

My name is Sarah and I am 30 years old. I was diagnosed of scoliosis at the age of 14 and I underwent surgery (arthrodesis) in France. 4 years after my arthrodesis, I had many complications and I had to have it removed and subsequently my symptoms worsened. In addition to scoliosis, I started having migraines every day, vertigos, I lost sensitivity in the entire left side of my body and a lot of fatigue. I had been fighting for two years. I had many scans and after two years they discovered that I had Arnold Chiari malformation. None of the clinicians I saw offered a treatment. I felt very abandoned because I felt that my symptoms were getting worse and I expected many complications in my future.
I started researching on the Internet and then I discovered the Institut Chiari in Barcelona. I was intrigued when I found out that there is a relationship between scoliosis and Arnold Chiari malformation – which made sense – but the doctors in France didn’t see it. I started to get in touch with different French patients who had undergone surgery for Filum disease and, a year ago, I decided to undergo surgery as well. I was very happy with the team. They are very professional. The pre-operative visit was exhaustive and took a long time. They cared and listened to all the symptoms I have from head to toe.
A few hours after the surgery, I could feel 80% of the left side of my body that had lost sensation for years, so it was quite a miracle. I also felt less tension in my body; I knew that my Filum was too tight. I tried to take good care of myself, not to carry too much weight, following the Doctors’ recommendations.
I have just had my 1-year postoperative check-up: since surgery I haven’t had a single migraine, which is quite a miracle, since I used to have daily migraines. I feel much better, straighter, I have regained my energy, I am a little less sensitive, before I had a feeling of numbness every day and now I have it but much less. Sometimes it happens that I notice my symptoms but only when I accumulate a lot of fatigue. I can only see positive results from this surgery. When comparing my MRIs, there are currently no major changes, I continue with my scoliosis and Arnold Chiari but at least they have not progressed and, above of all, there are many symptoms that have decreased and this is already very miraculous. I am very happy but at the same time disappointed because there is not much information about this malformation/disease, about this institute. If I had known about that before, I could have avoided many things and it is for this reason that I am sharing this testimony today, which I hope will reach other people.
The main goal of this surgery is to stop the progression of disease. Before surgery it is not possible to know if there will be improvements so, since in my case the progression of the condition stopped and I experienced improvements as well, it was a big surprise and I am very happy. It is a “super” institute; I greatly appreciate the work done by Dr. Royo and all his team.

Surgery date: 17.03.2022 Filmed: 29.04.2022

Sofiia is a patient from Russia with Arnold-Chiari Syndrome Type I and Syringomyelia. She found out about her diagnosis, when she started suffering from headaches and pain all over her body, which kept her from sleeping. One day, searching on the Internet, she discovered the Institute Chiari and decided to travel to Barcelona for an in-person consultation. During the visit she asked questions to the doctor and could clear her doubts. Sofiia decided to undergo surgery. The whole process took 3 days. Immediately after the intervention, Sofiia felt changes: her headaches, the pain in her knees and the nausea disappeared.
Now, one month after, she feels like new. Sofiia is grateful and happy for having found the Institute Chiari de Barcelona and recommends that patients with similar diagnoses do not endure the pain.

Video update

Surgery: 11/12/2018 Filmed: 27/12/2021

Eduardo Filipe Schewtschik Filho, the patient, tells us his story briefly.
“Hello, my name is Eduardo Filipe Schewtschik Filho and I am 15 years old. 3 years ago I underwent surgery for Arnold-Chiari I Syndrome. When I started High School, I couldn’t walk. It was difficult; I felt pain, had reduced mobility and lack of muscle strength. I feel so much better now. I can walk now and I have better reasoning ability than before.  I am much better”.
Then, Mrs. Luciana Bigaisk, the patient’s mother, explains how her son is doing:
“Eduardo did his 3 year follow-up consultation. When he underwent surgery, he was very well and had a fantastic recovery. Now, in the follow-up consultation, we have seen that the cerebellar tonsils have ascend and he is fine. 100% recovered. We would like to thank the Institut Chiari, Marta and the entire team who have helped and supported us to be here. Thanks. “

We are the Bruno family and we are from Buenos Aires, Argentina. Our children, 14 year-old Donato and 11 year-old Rosella, underwent surgery at the ICSEB on September 2, 2021. Each experience is unique but, just as the story of other families with the same diagnosis helped us not to feel alone and to make the right decision, we want to share ours and hope that it can help others as well.
Rosella’s Diagnosis:
From an early age she had occasional headaches, very spaced out, especially if she felt hot. During 2020, when she was 10 years old and during the lockdown, at night she suffered more and more frequently episodes of anxiety and confusion, strange thoughts, severe headaches, nausea and insomnia. She was always a very active girl, extremely cheerful and affectionate and that baffled us.
We had a consultation with a paediatrician and he told us that her discomfort was probably of emotional origin, as there were many other children who were distressed by the confinement during the pandemic or by changes of the growth phases.
These episodes ended up being daily and increasingly intense and happened at other times of the day as well. She would say to me: “Mom, I am not sad because of being at home. I am trying to relax and sleep; it’s not that I am nervous at night. I don’t know why this is happening to me or why I have this pressure like a bankd around my head“ We had some terrible and very distressing months. We brought her to our bed in case it calmed her down and she fell asleep at four or later in the morning. Once she fell asleep, she rested and this actually gave her some relief until everything started again the next day.
One day, she broke down. Her legs didn’t hold her anymore; she felt tingling in her hands combined with nauseas and a very severe headache. That weekend, we went through four different clinics until they took us seriously and did a CT and MRI scan that showed a 4.75 mm descent of the cerebellar tonsils. We were told to look for a neurologist or neurosurgeon and, for the first time, we heard about Chiari Syndrome. We were looking for the best paediatric neurosurgeon in our country, a specialist in Chiari, head of neurosurgery at one of the best paediatric hospitals in our country.
The first thing he told us when he saw her MRIs was “for me it’s not Chiari because it doesn’t show a 5mm descent which is the limit”. At my insistence on the different symptoms that Rosella had (headache, insomnia, back and limb pain, tingling and pins and needles, nausea, blurred vision and bright spots) his response was “take her to the psychologist”. To discard any doubts, he asked us for another MRI and, during the second consultation, he confirmed that Rosella had Arnold-Chiari Syndrome Type I and Syringomyelia and she had to have a dcompressive suboccipital craniectomy with a cervical vertebrae laminectomy in order to make the LCR flow better. He wanted to be very honest with us and he told us, he did not know the cause of the disease, that surgery would only alleviate the symptoms, that it was a very serious surgery, that it could go well or not, that there was a risk of hydrocephalyus, meningitis, which may need a more invasive second surgery and he finally said “ The Chiari patient has to get used to the pain”.
My husband and I came out of his office devastated, swallowing our tears because we didn’t want to worry our children who were waiting for us in the waiting room. We are Christians. We believe in the love and grace of God, our father who saves us through His Son Jesus Christ. We read the Bible and we pray. On our knees, beside our bed, we unload our heart in front of Him and we ask Him for help and guidance on the path He intended for us. We were resigned to go through with this surgery for our daughter but, thank God, for various reasons it did not materialize despite our attempts to do it, as it was desperate to see our daughter suffering and not being able to do nothing to relieve her pain.
In the meantime, I searched and read all the information I could find on the Internet. One night I saw a picture and the name “Institut Chiari & Siringomielia & Escoliosis” struck me. Was there an Institut specialized in my daughter’s condition? I immediately searched the web and I couldn’t believe it when they described a minimally invasive surgery through the sacrum that eliminates the cause of the disease. Completely different from what the Argentinian neurosurgeon had told us. That same morning, I filled out the form without much hope. They answered me quickly and kindly offered me a free remote diagnosis by sending her MRI and then we had a videoconference with Dr. Fiallos. He was very clear on my daughter’s diagnosis and in his explanation. He mentioned that it is a disease that can be inherited, with a very varied symptomatology. This made us feel the need to test our son Donato also.
Donato’s Diagnosis:
Donato did not have the same symptoms as Rosella. He had back pain, sometimes his arms, legs, neck, etc. but the Doctor’s answer was always “this is growing pains”. From an early age, he had occasional episodes of lipothymia, for various reasons: a fright of something, nervousness, heat, prolonged standing. After several studies, we were told that he had “vasovagal syncope”. As he got older, he used to be very tired and we were also told that this was because of his age.
He did an MRI in March 2021, his MRI report was: “everything according to normal parameters” but when we sent the images to the ICSEB the diagnosis was completely different. Donato had impaction of the cerebellar tonsils, rotoscoliosis and multiple disc disease. For us, it was impossible to pay for Rosella’s surgery, let alone for two.
We put everything in God’s hands. If it was His Will, He would take us to Barcelona and so it was. We made the decision that this was the treatment for our children. Family, friends, even people who didn’t know us and also the Chiari Foundation, helped us. Incredibly, in six days we were able to collect the amount we needed to cover the two surgeries and also the trip to Barcelona for all the family. God is good and faithful and He proved it once again.
The experience at the ICSEB
We would never have had the courage to make such a decision without Safaa El Idrissi who answered all our questions quickly and in detail and gave us all the help we needed at each moment.
The day before the surgery we had the consultation with Dr. Fiallos and Safaa. We were much surprised by how detailed and protocolized the assessment was, how they registered all the information and, also, by the warmth and good humour with which Dr. Fiallos did every test, making the moment more pleasant and bearable. At the end, Dr. Fiallos gave us a very detailed explanation of each patient’s diagnosis. We were surprised by Donato’s case. His disease progressed a lot but quietly not as in the Rosella’s case, which was more visible by the variety of symptoms. If we had listened to the diagnosis we received in our country, Donato would have continued to get worse. Dr. Royo also greeted us and explained to our children what would happen the next day with a lot of love and using simple terminology.
The service / attention was impeccable: punctuality, highly trained and prepared professionals but also respectful and sensitive, warm and aware of the burden with which patients and relatives arrive to the ICSEB. They even showed us a simple animated video where we could see how the surgery would be performed (suitable for children to see). We could ask questions in order to be calm and confident for the surgery.
Both surgeries were performed as scheduled on the morning of September 2 at Cima Hospital. By the grace of God, everything went fine and nothing happened. After we were in our hospital room, Donato and Rosella were able to get up and walk. From that day on, Rosella was able to sleep well again. She regained her sleep and the urge to go to bed and being able to sleep (things that seem so common but when you lose them you realize their great value). Dr. Fiallos and Safaa came to the hospital within hours after surgery to see how they were doing and did a comparative neurological assessment and there were some positive improvements. The surgical wound was minimal, easy to care for, did not require removing stitches, and in fact, after a few months, it is not even noticeable. The recovery was excellent.
We are more than grateful to our Heavenly Father for proving His love, power, and faithfulness through this test because He has given courage, strength, and peace to both our children and us. We would also like to thank all the professionals we met at the Institut Chiari and the people who helped us to provide our children with the best treatment in the world.
We encourage patients and family members to seek information and advice on all the options for making an informed choice. In times of distress it is when one is most vulnerable, everyone gives their opinion with good intentions but it is a great responsibility to decide on one’s own life and even more so on the lives of our children.
We are grateful to have gotten to know the Institut Chiari de Barcelona on time!
“YHVH is good, He is strong in the day of distress, and he knows those who trust in him” The Bible
Email:[email protected]

“My name is Maria da Cruz and I am from Angola. I started having pain in my neck, which initially seemed to be a torticollis. As it did not improve, I did some tests in Portugal and I was diagnosed with Chiari I. From there, I started to research about this disease because it was a condition that I had never heard of before and I discovered the Institut Chiari on the Internet. I contacted the Institut and I also read the testimonials of many people from different countries who had already been there.
At the Institut, they recommended that I do some tests and I did. I send the tests by email and, after analysing them; the doctors concluded that I could undergo surgery there using the Filum System® Method. I underwent surgery. It’s been almost 3 months and I feel great. Before, I had a lot of headaches, a lot of pressure on the brain, pain in my back, in the upper and lower limbs but, now, I don’t feel any of that anymore. Blurred vision, or pain behind my eyes? I don’t feel any of that anymore. My hearing, which was also affected, has improved considerably.
In short, I can say that this surgery did to me a lot of good and I recommend it to other people who have depression or nervous system problems to contact this institution because, sometimes, there are health problems that can drag on over years and, with a small surgery, your problems can be solved.
My gratitude to the Institut Chiari de Barcelona and, above of all, to Dr. Fiallos for his dedication. All the team was very kind, especially Marta. Thank you all for everything.”
My email: [email protected]

1. (*) Royo-Salvador, M.B., Fiallos-Rivera, M.V., Salca, H.C. et al. The Filum disease and the Neuro-Cranio-vertebral syndrome: definition, clinical picture and imaging features. BMC Neurol 20, 175 (2020). https://doi.org/10.1186/s12883-020-01743-y , https://rdcu.be/b36Pi

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

Update: 19/10/2021

Surgery date: 26/02/2009 Filmed: 07.05.18

Hello!
My name is Angel Fernández, I’m from Valencia (Spain) and 9 years ago I received the diagnosis of Syringomyelia, Arnold-Chiari Syndrome and Idiopathic Scoliosis. By doing some research on the Internet, I found the Institut Chiari de Barcelona. My symptoms were: dizziness, headache and neck pain. I decided to undergo the surgery that is performed at this medical institute and it has been 9 years since then. I really feel very well, the dizziness and the migraine disappeared and two days after the surgery I started to notice changes; I recovered the sensitivity on the left side of the body. I am really grateful to this medical Institut for everything they have done for me, because thanks to them, nowadays I can have a normal life and feel fine.

Testimonial:
“Hello, I am Lilou’s mother. She is 10 years old now and we come from Belgium.
Today we are at the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) for the 1 year check-up after the sectioning of the filum terminale.
Everything started when she was 7, as she used to complain of strong headaches with vomiting during the night. Therefore, we decided to see a Belgian neurosurgeon, who recommended a cerebral MRI in February 2016. It was then when we received the Arnold Chiari and Syringomyelia diagnosis. One month later, Lilou underwent a craniectomy with laminectomy and dura mater plastic surgery in the same surgical session. She had no complications; the surgery went well, but unfortunately, she kept getting worse, until she ended up in a wheelchair. She couldn’t walk, she suffered from paralysis and terrible neuropathic pain. She got to the point that she asked for the euthanasia, she wanted to die.
We felt so little understood, my husband and I felt powerless, so we decided to take action and search the Internet, where we found the ICSEB. We arrived in Barcelona in February 2017 for a first consultation. At that time, Lilou could walk with the help of crutches, but a month later, when we returned for the sectioning of the Filum Terminale, she was in a wheelchair as she couldn’t walk any more.
One hour after the surgery, she was able to move her feet, then she started to walk very fast and, above all, she was no more in pain.
Lilou, how are you feeling now, one year later?”
“Well, it’s super cool because I do not feel pain. If there are other children who have the same condition as mine, I really advise them to come here, because they will feel better and they will stop having those strong pains.”

Surgery date: October 2016 Filmed: February 2018

Good Morning!
My name is Mireille, I was diagnosed with Arnold-Chiari Syndrome Type I and Syringomyelia three years ago. I was operated in the Institut Chiari de Barcelona in October 2016.
Before the surgery, I could hardly walk or move, it was impossible for me to bend down. I had insomnia, tinnitus and migraines accompanied by vomiting. After the surgery, when I woke up I was able to bend down and get up on my own. Since then, it has been a year of happiness. I have been able to take up again all of my body’s functions. I have been able to return to work and live like any normal person.
I am very grateful to Dr. Royo and Dr. Fiallos who operated on me. Here am I today for the check-up after one year of the surgery. Everything is going well, I have recovered all my strength. I thank the Institut Chiari de Barcelona for this surgery. It has saved my life.
Thank you.

On the tenth day after her surgery, Endzhe tells us her story. She had felt improvements in her way of walking already on the afternoon after the surgery. It had been difficult for her to walk well all her life: her legs were heavy and stayed behind. Her body leaned forward. It was hard to keep it straight. In the afternoon she felt changes and lightness while walking. Other symptoms have also improved: there were no headaches, she could move her head from one side to the other and her hands no longer hurt. But what impressed her most was her new way of walking. She can easily rise, she recovers quickly and she moves differently.
She was diagnosed with Arnold-Chiari syndrome and recommends the procedure for cases with similar symptoms. She regrets not having been operated by the Sectioning of the Filum terminale before, when she was a child.

Hello, I’m Vanesa Saez and I am 31 years old. Three years ago I was diagnosed with Arnold-Chiari and they told me that all of the sudden. Until then I had been suffering from headaches and migraine, we didn’t know about the existence of this disease. When we left the neurological consultation, they told me that the only option I had was undergoing a surgery called craniotomy. They gave me an appointment with a neurosurgeon in Valladolid to explain to me what it consisted of. My partner and I looked on the Internet and we saw that there were other options: there was the craniotomy – which was quite dangerous – and then we found the Institute Chiari de Barcelona. I asked a patient operated there for information and she was doing very well.
One month after the diagnosis, I decided to undergo surgery. I was operated in the Institut Chiari de Barcelona by means of the sectioning of the filum terminale. Previously, my life was based on having constant headaches and I could never smell anything out of the ordinary. In my job I suffered specially in the legs, in the back and in the arms.
After the surgery, my life has changed a lot: headaches are almost non-existent, I still have some pain in the back but it is also due to age and the type of work I do. They operated on me in 2015, and today (March 12, 2018), I have improved a lot. Today I came for a check-up and they gave me the possibility to make this testimony so other people can see my evolution. I think I have improved and I will do even better. It’s about trying and letting them help us.

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]

Surgery date: 7 June 2018 Video recorded on: 21 June 2018

“My name is Taylor Pollock. In June 2016, I got a headache that never went away. In September 2016, I was diagnosed with Chiari Type I and in October 2016 I was told that I needed decompression surgery and not to research anything and that it would all be explained before surgery but it never was. My recovery was very traumatic, I vomited daily for weeks and in June 2017 new symptoms appeared, I have a weakness in my left side, a headache that was always above a seven or an eight, I was vomiting three to five times a week, I was sore all over and I began to think that my life was over. And in November 2017, I was diagnosed with Syringomyelia. My mom had then seen a post online about the Institute in Barcelona and being equestrian people, we understood how a diseased ligament could cause my conditions and symptoms. After speaking to others who had been through the Filum System surgery, I knew that it was the right thing for me. I am now two weeks post-Filum System surgery and my headache has decreased amazingly, I haven’t vomited since and I feel like a new person. I am just so so grateful to everyone at the Institute for the opportunity to get my life back.”

The patient Delania Oliveira de Almeida is 30 years old and lives in Fortaleza, in the Province of Ceará (Brazil). In this video, she tells us that she was diagnosed with Arnold-Chiari Syndrome I in 2016. When she found out about the diagnosis, it was a shock for her: “it was as if the world and everything had come crushing down on me. I have a daughter and I have dreams to fulfil.”
When she started searching about this disease on the Internet, she found information about the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB)’s work. “It was then when I opened my heart and my mind and found the strength to fight for improving my life”.
Ten days after undergoing treatment according to the Filum System^®, this Brazilian patient says she feels well. “I had difficulties to swallow, to breathe, loss of strength in my right hand (..). Now I’m fine. Before I couldn’t get up after kneeling and now I am able to. In addition, I have had many other improvements”.
Delania also talks about the difference between the conventional treatments generally proposed, the Suboccipital craniotomy (SOC), and the one performed at the Institut Chiari de Barcelona. “The craniotomy is a very risky surgery and the one here [at ICSEB] is minimally invasive.” To conclude, she leaves a message for other patients: “This is a dream come true. I encourage you to never give up and think that this surgery is the best thing that exists. ”
Contact email: [email protected]

In this video, Cícera dos Santos tells the story of her sister, Maria do Socorro, diagnosed with Arnold-Chiari Syndrome Type I six years ago and operated by means of suboccipital craniotomy (SOC) four years ago. After this SOC surgery, the patient got even worse: intensification of the pain, breathing difficulty, loss of strength in the upper and lower extremities and many other symptoms. Due to the deterioration of her clinical history, she had to start using a wheelchair to move up since August 2017. In addition, Maria do Socorro lost her voice (*) in April of last year. For this reasons it is her sister, Cícera, who is telling her story in this video.
Cícera explains that, after the craniotomy, her sister had started investigating about her pathology on the Internet and that she had found the ICSEB and was like seeing the light at the end of the tunnel. From that moment, both of them started a big group effort to make the trip to Barcelona viable.
Two weeks after the ICSEB’s team did the surgical treatment, Cícera says that both felt really happy because “the improvements were exceptional”. Cícera affirms that both knew that the objective, with the Filum System^® method, was to interrupt the progression of the disease and that improvements of the symptoms are different in each patient, but her sister’s improvement was very evident. One of the first changes Cícera observed was the recovery of the sensitivity in the patient’s lower extremities with an improvement of the circulation. “Her legs were freezing. On the same day [of the surgery], still in the hospital’s bed, I approached her to help her to get out of bed and I already felt that the temperature of her legs was normal”. Also, she describes that Maria do Socorro’s feet, before the surgery, were atrophied, inwards. A few days later, the improvements were remarkable. “One of her feet has improved by 100% and the other one still needs to be exercised. We know that she will need, from now on, physiotherapy and rehabilitation, but with many possibilities of recovery”.
Cícera also reports that her sister’s headache had disappeared since the day of the surgery. “It really has been worth it, we have had a wonderful experience and, without any doubt, we recommend it to those who have the same problem- those who can and who have this opportunity – to fight for the possibility of coming here to undergo this treatment. They do a very serious job and really well done. The surgery is excellent, they have very high standard professionals and the patient care is unbeatable.”
To conclude, both Cícera and Maria do Socorro have made the most of this video to express their gratitude. “We only have gratitude for all the medical team, that performed the procedure, and for Marta, who welcomed us in such a lovely way. Due to the fact that she is from Brazil, we have felt like home being here with her. We thank her very much (…). We will always go to wherever it takes to give our testimony: Me, as a sister, and she [Socorro] as a patient. ”
Also the ICSEB would like to thank both of them for the great example of overcoming and strength that you have given us. Thank you so much!
(*) Update: Maria do Socorro regained her voice on the 24^th March 2018, as the patient’s family informed us.
Contact email: [email protected]

Surgery date: October 2016 Filmed in July 2017

My name is Gladys Beatriz de Supo, I am 45 years old and I am from Peru. I suffer from the Arnold-Chiari Syndrome type I and idiopathic Syringomyelia, two conditions that used to be unknown to me. I had to see many neurosurgeons in my country to obtain treatment for my disease, and they did not give me any solution.
My symptoms were: strong and daily burning feeling, dizziness, general fatigue, I was not even able to sign documents because my hand was shaking and was losing the strength in the left upper arm, and even so, I did not understand why.
I then decided to look for information on the Internet and it was there that I found many testimonials that took me to get to know the Institut Chiari de Barcelona. I had to make many efforts to manage to get to Barcelona and to have the surgical procedure of the Sectioning of the Filum terminale according to the Filum System^® method. I already started noticing very rewarding improvements on the day after the operation. Now, a year after the surgery, I feel even more improvements and I can say that may life has changed definitively.
I no longer have headaches or dizziness, I don’t tire that easily and I can sign my name smoothly, even though my hand was shaking before. I have to say that I was offered a better quality of life and that the disease came to a halt.
It is very regrettable that the neurosurgeon that I saw in my country offered me the craniectomy as a treatment. I did not need an explanation, I realized that it is very risky, so I opted for this surgery [Sectioning of the Filum terminale according to the Filum System^® method] that has nothing to do with the craniectomy.
I want to cheer everyone suffering from the same symptoms as mine on to make the effort come all the way over here to have the surgery. It changed my life and I can feel it. Thank you!

Video Update

Filmed in June 2017

Lais de Oliveira Vaz, who was at the ICSEB in 2017, tells us about her experience one year after having undergone Surgery with our team.
I had surgery according to the Filum System® [method] one year ago and what I would like to say about this method is that it changed my life. Even though I underwent the first surgery [the craniectomy] from which I have sequelae, [the sectioning of the filum terminale] changed my life and has given me a much better quality of life than previously. I can only thank the medical team and all of the staff working at this institute, they are all wonderful. I have no regret and if I could turn back in time, I would certainly do it again, as the horrible headaches, the sensitivity loss, the dizziness, etc….have improved by a lot and I think I will even get better as the years go by.

Miss De Oliveira tells us that she was not able top lay and run like other children when she was little because she suffered from pain and breathing difficulties. Her situation got worse in her teens as the pain increased in the head and body, together with fatigue and tremors in legs and eyes. There was a deterioration of the symptoms at the age of seventeen and she saw many physicians of different specialties over the next two years and received different diagnoses, from sinusitis to chronic headache. At the age of 19 she found out through a MRI scan that she had the Arnold-Chiari Syndrome I in an advanced stage. Her neurologist advised to undergo decompression surgery.

Miss De Oliveira noticed due to her personal experience that generally physicians do not know this condition well and they offered the craniectomy as the only treatment option. After having undergone the mentioned procedure, her symptoms had gotten even worse. She had to stop working and studying, and her life was practically reduced to taking remedies for her pains.

The patient set out to search the Internet to find out if in the world there are other methods to treat the condition and that is how she came across the Institut Chiari de Barcelona, which offered a treatment completely different to that at other centres. 20 days after the operation, Miss De Oliveira tells us that she is feeling better, without pain, less tired and she feels something new in her body every day. “It is as if I was learning to live.”

To conclude, Miss De Oliveira sends a message to others who may be feeling despair because they have been diagnosed with the Arnold-Chiari Syndrome I. “If you have the opportunity, do not get the craniectomy done. I know that it may seem impossible for many; the Institut Chair is a private centre where you have to pay a high Price, but if you have the chance, come to Barcelona to get the surgery so that you can learn to live and fly again, as did I.”

Contact e-mail address [email protected]

THE STORY OF MY DISEASE AND RECOVERY

I remember that since I was 3-4, I used to see vibrations of colours that moved and, at the same time, I had the sensation that I was flying upwards. I was a quiet child, I didn’t like active play and preferred quietness, silence and heat. At 12, although I became more active, I found gymnastics classes difficult. I couldn’t climb the rope, my chest would start to hurt and I had no strength in my hands. I didn’t like running, jumping and had unpleasant sensations in my head and neck. Since childhood I haven’t been able to distinguish smells.

After giving birth to my first child (the birth was natural and difficult, since I had no contractions and needed a blood transfusion), in my thighs appeared pitting oedemas 30 cm long and 3-5 cm deep. They didn’t hurt, but were horrible to see. They disappeared one year and a half later.

When my son was one year and a half, I returned to work. I brought a lot of work home with me and in June 1984, while working at home, I completely lost my vision for about 15 minutes. They called the ambulance, the doctors were in shock while checking my blood pressure, I heard them say: “With this blood pressure you can’t live”. I was hospitalised, but they were not able to identify the cause of my problem. After this episode, I started having occasional, intense headaches, with low blood pressure, vertigos, nausea, vomiting. I often had the sensation that I was about to faint and started having ringing in my ears.

In 1985 I gave birth to my second child. I had no contractions this time either and they had to induce the birth. It was a quick birth. I spent the following year with a permanent cold. After a year, wounds and cuts stopped healing and could remain swollen, with pus, for months. Scars were left and no treatment would help. At the same time, my heart started hurting, when I lay on the left side I could hear my fast heartbeat, I even noticed it in my ears. My pulse was 92-125. I was diagnosed of chronic tachycardia, but they couldn’t find the cause. Everything kept on like that until 2002.

In 2002 we were living in New Zealand and bought a butcher’s shop. The job was physically hard and I was very cold. During this time, I was very stressed. In July-August I had my first crisis: I lost consciousness and when I woke up, I had a terrible headache, couldn’t move my tongue, I dragged my left leg and my left arm felt like hanging and in horrible pain. The left side of my face felt like falling off. I was admitted to hospital and had a brain MRI done, but nothing was detected. During 3 months I had several crises with tachycardia, low blood pressure, nausea, headaches. In one occasion I was clinically dead, my 20-year-old son was with me. When I recovered, I was very swollen, with a strong pain in my heart and headache. I was hospitalised during a week. Tinnitus started again and at times I couldn’t hear anything because of that.

After being discharged from hospital, I started feeling pain in my right knee when I got up from sitting and it was so strong that I screamed with pain. I was treated with no results and after 2 years the pain was gone as unexpectedly as it had appeared. In those 2 years and following a complete MRI with contrast, I was diagnosed of Syringomyelia and Chiari I.

At the end of December 2005, we returned to Tomsk (Russia). Every now and then I would have a crisis, especially in 2008 and 2011. A couple of times a year a neuropathologist would treat me with vitamins for the brain and antidepressants. In 2008 I became very irritable. My hands and feet had been cold all my life. Despite that and the pain, since 1998 I had been training every day because I knew that would help preserve the strength in my lower limbs.

In 2013 I started having constant burning pain in several parts of my body: my joints, muscles, bones of the left leg. I had cramps with horrible pain in my feet, which would last 15-30 minutes. I also started having problems with my bowel; I couldn’t hold it and had a few “accidents” while I was out.

In 2014 I started experiencing falls when I was out, as if somebody was hitting me on the back of my knees. In 2015 I began to fall when I got up in the morning, with pain and weakness in the Achilles tendons. I couldn’t walk more the 2 km because of the intense tiredness, vertigos, weakness, nausea and vomiting. It was difficult to climb stairs – I live on a 5^th floor with no elevator.

On February 23 2016 I underwent surgery at the Institut Chiari & Siringomielia & Escoliosis de Barcelona and was discharged on February 24. The intervention was a success and I’m feeling well.

FIRST MONTH AFTER SURGERY

Oedema in the eyes, pain in the eyelids (mainly the right one). Until 02.03.2016 I had a lot of eye discharge in the morning. On 02.03.2016 the sensation of eye fatigue disappeared and it was easier to look to the side and upward.

On 03.03.2016 the skin colour of my hands changed, the redness and the oedema disappeared. The oedema in my face and eyelids was gone. My eyes looked bigger. I no longer heard my heartbeat when lying on the left side. Since surgery, my pulse has been 73-75.

For 15 years I could not lie on my stomach because of the strong lumbar and dorsal pain, but since surgery I sleep like that (it’s my favourite position). I have no pain in my bones or joints. I realize that my bowel and kidneys function differently, now I can hold it. I had an “accident” just a couple of times. I’m walking a lot, approximately 5-7 km, and I’m not getting tired.

When for surgery they had to place the IV, the wound healed immediately, while before it would have taken much longer to heal and a scar would have formed.

The colour of my nails changed. Before surgery the nails of the first and second toe of both feet where black and irregular, while now all my nails are smooth and shiny.

Since 29.02.2016 I’m clearing my throat less frequently, while before, especially at night, it seemed as if liquid was running down my throat and I kept coughing.

My body temperature changed. At night I don’t need to wear socks any more, I even feel warm. It seems that my blood circulation improved. My head seems clearer and I no longer notice ringing in my ears. The irritability is gone, I feel calmer.

On 03.03.2016 I got cramps in my left foot, which disappeared in a few minutes. On 04.03.2016 I had my postoperative check-up and improvements were reported in everything. Even the grip strength in my left hand improved with 10 kg (prior to surgery it was 7 kg). They changed the dressing and the wound was healing well. Now I can sit with no problem. On March 5 I had a mild pain in my left shoulder and arm during a couple of hours. I can now walk for hours, I’m full of energy.

The old scars on my legs from the 2015 dog bites and the falls from the stairs are less visible. Today is March 6 2016.

On 07.03.2016 I was on my way back to Tomsk, I had a good flight, the wound hurt a little.

In 2001 and 2006 I underwent two abdominal surgeries to remove a seroma. After that, my abdomen felt like a pillow and as if it were not a part my body. Since the sectioning of the filum terminale, the nerve connections recovered and the skin of my abdomen now feels good. Furthermore, the post-seroma keloid scar on my abdomen reduced a little this month (today is March 5 2016).

In the morning I’m coughing up white mucus – am I clearing my lungs this way?

SECOND MONTH AFTER SURGERY

My health is stable. Sometimes, very occasionally, I feel a very mild muscle pain in my legs which lasts half an hour. I still cannot have sex, we tried but the internal scar started hurting. This lasted 2 weeks. I had a couple of mild headaches. I’m still coughing up white mucus, it feels like my lungs are clearing up.

I’m training with my upper body 20 minutes per day, stationary biking 5 minutes and walking 5-6 km. After 3 sessions of stationary biking my lumbar spine (the wound area?) started hurting. I stopped working out for now and will see if the pain decreases.

The night between the 14 and 15 of April, my knees, elbows and arms hurt a lot, I felt the pain but could not wake up. The next morning only my elbows hurt and after exercising the pain disappeared. Two days later I woke up at night because of a strong pain in my thighs, which was gone in the morning. I noticed that the pitting oedemas in my right thigh and the buttocks are less visible. I keep having a mild lumbar pain. My bowel functions completely recovered 2 months after surgery, now I can go for a walk and hold it with no problem at all.

My health is good, I have an active life.

The night between the 25 and 26 of April I woke up because of an unbearable pain in my lower limbs, which went from my groin down to my toes. My muscles and bones hurt for about half an hour, after that the pain was gone. The following night my knees hurt for a short time. Were my nerve endings recovering?

On May 1 I had an intense burning pain in my wound, I took paracetamol during 2 days and the pain disappeared. On May 10, at night, my right arm hurt for a short while. Between the 19 and 21 of May I stopped coughing up white mucus.

The last week of my third month post-surgery, I was hanging wallpaper, going up and down the stairs, and my lumbar spine started hurting. I took paracetamol and the pain decreased, just a mild discomfort persisted. I’m assuming it’s too early to carry out these activities.

My left eye started hurting slightly (today is May 23 and I’ve been in pain for a week already).

FOURTH MONTH AFTER SURGERY

(24.05.16-24.06.16)

My health is good and stable. I’m walking a lot and I’m active. This month my cervical spine hurt and made me feel tired for a couple of days.

FIFTH MONTH AFTER SURGERY

(24.06.16-24.07.16)

My health is good and stable. I’m walking a lot. We travelled to Vietnam, I walked a lot and felt well. On June 27, at night, my knees hurt for about half an hour.

SIXTH MONTH AFTER SURGERY

(24.07.16-24.08.16)

3 days before my birthday, the wound started hurting. The pain lasted for a week and I stopped exercising for a couple of days. Now I’m in no pain at all.

On August 30 I saw my ophthalmologist, he told me that my vision improved by 70%. Now I can drive without wearing glasses. Before surgery my vision was -1.5 in the left eye and -1 in the right eye, with -1 bilateral astigmatism. Now my vision is -0,75 in both eyes and the astigmatism in the left eye is cyl-0,5; ax45º.

ONE YEAR AFTER SURGERY

I’m feeling well and I’m very active. The only problem is a mild lumbar pain. In April I’m going to update my MRIs for the check-up. We will see how it goes.

E-mail: [email protected]

My name is Dayse, I am 34 years old and have had on and off pain since I was 28 years old, the cause of which was not discovered.
These pains intensified in July 2014 and I had to go to the emergency room because they were really bad. I was diagnosed with lumbago, depression and fibromyalgia. I followed the suggested treatments and prescriptions according to the medical advise, but nothing soothed my aches.
On the occasion of a strong crisis, I went to hospital and explained to the physician on call that I could not take it anymore to have such strong pain and having to take medication without feeling improvements. She requested a MRI scan of my spine (of the lumbosacral region) and referred my to an orthopedist with the result.
The orthopedist told me after assessing the scan that he had detected an alteration; but he did not explain it. He also told me that I would have to consult a spine specialist. When I got home, I started to research the term “syringomyelia” on the Internet and all the results said that it was “rare and degenerative condition of the spinal cord, without cure, that over time could condition the patient to the use of a wheelchair”. That was when I realized that I had “bomb” on my hands. I found the website of the Instituto Chiari & Siringomielia & Escoliosis de Barcelona already in the first Internet search, but…as it said exactly the opposite of what I had read before, I had not paid much attention to the information.
After finding out more information about the disease, I got to know Facebook support groups made up by patients and I quickly understood that this condition was not so rare, because the groups had many members. I contacted with some persons who had undergone surgery in Barcelona in the first group, and their experiences were best, and very different to those of many patients who had been operated with the conventional method in Brazil.
I sent my medical reports to the Institute and they in turn sent me a certificate that informed me that I had the Neuro-Cranio-Vertebral Syndrome as, other than the Syringomyelia, I had the Arnold-Chiari Syndrome Type I. They also sent me a quote with the costs for the procedure.
In April 2016 I decided to start a campaign to obtain the necessary funds. The campaign went on for about a year and on 21 March 2017 the longed for Sectioning of the Filum Terminale surgery became reality. Significant changes were already observed eight hours after the procedure, such as the recovery of strength in my arms and legs. After ten days, during the post-surgical check up appointment, other improvements were detected. The one that most caught my attention was the decrease of the hyperreflexia in three regions of my right arm (where I already had a motor loss). My reflexes had simply leveled; an improvement that could only be verified a year after the surgery, as I was informed.
The main improvement has been the disappearance of the constant pain that I was experiencing in the nape, head, cervical, right shoulder and lumbar areas, which has contributed to an improved quality of life. I was operated three months ago and I have not taken any more antidepressants (that had been prescribed because I was told that the pain was psychological…).
The physicians at the institute try to stop the progression of the condition with the surgery, but, furthermore, I beat it, and I can say that this was the best-spent money of all my life.
I am grateful to God and everyone who helped to achieve my dream. I hope that with my testimonial and those of other patients, we will be able to catch the attention of our physicians so that more patients will be able to benefit from this method.
E-Mail address: [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

Filmed on: 24 July 2017 Surgery date: 25 July 2017
The patient had trouble moving the lower extremities. She lacked strength in her legs and used a wheelchair.
On day after the surgery. Filmed on: 26 July 2017
The patient recovered strength in her legs and was able to walk by herself.
One month after post-op. Filmed on: 01 September 2017
Her gait improved and her movement was securer and quicker.

Patient Valdir Adriano da Silva tells us in this video about how he found out about his diagnosis and how he felt a few days after the Sectioning of the Filum terminale procedure in March 2017. The Brazilian explains that in late 2016 he started noticing some symptoms related to the conditions he is suffering with, such as shaking in his arms and legs, tingling and difficulties to walk and swallow. Worried, he went to see a physician, where they ordered some tests and that is how he found out that among other conditions, he has the Arnold-Chiari Syndrome Type I and Syringomyelia.
Valdir decided to do some research on his diagnosis on the Internet and found the ICSEB and method developed here to prevent a progression of his affectations. After the assessment of his test results and the treatment orientation as formulated by our medical team, the patient organized a campaign to get the funding to make is trip to Barcelona possible.
“Now, after the surgery, I feel many improvements, I feel by 80% better than before. I really feel much better: I can walk well, I can eat and swallow normally, I don’t have a sore back or legs and I don’t get strong headaches anymore”, tells us Valdir ten days after the procedure.
Valdir wants to encourage other patients suffering with the effects of these conditions. “ If you have the same symptoms that I used to have, don’t hesitate to look for a solution, do research”. He also took to opportunity to clarify that the surgery performed at ICSEB is minimally invasive. “Everything is quite uneventful and fast, the surgery is done in less than one hour.”
The Brazilian patient tries to calm foreign patients who may be afraid of communication problems with the ICSEB team. “Here at the Institut, there are interpreters, who are the people in charge of the patient care for each country. In the case of Brazil, they have Marta, who is also Brazilian and works here and looks after the Brazilians. So you don’t have to be scared to come, you will understand everything and they will understand you.” And he finishes with his personal perception of the team: “Dr. Fiallos is very funny and Marta, too. Dr. Royo is as well, I thought he was going to a bit formal, but he also made jokes. Everything here is very relaxed, they are all very good people.”
Contact E-mail: [email protected]

I am Teresa Teresa Balmaña Durbau, from Malgrat de Mar (Spain). I started having very aggressive symptoms such not being able to swallow, when I drank water it came out of my nose, I could not move or bow down my head, noise gave me very strong headaches. The doctors only ever gave me prescriptions for painkillers and I ended up being desperate, and then I found Dr Casals from Tarragona who studied my case and confirmed the Arnold-Chiari I diagnosis after having done a MRI. He explained to me that the conventional treatment through the public health system was to open up the skull, without guarantees. Dr Casals recommended a consultation with Dr Royo and that I should follow his advise before opening up my head, becoming paralysed or dependent on a wheelchair. They had studied together and he told me that Dr Royo was an expert in the field.
He then examined me and told me not to wait any longer to get operated and so I did.
I have come for a follow up appointment today and he said I was doing perfectly well, I feel perfectly well. My advise to others in my situation is to get the Filum Terminale operation, I had it 12 years ago and I am very happy and thankful for it.
Telephone: (+34) 937 612 963 E-mail: [email protected]

Hi! My name is Isabelle and I am 43 years old. I was diagnosed with Arnold-Chiari at the end of August 2016. I had been suffering for 14 years. I decided to do some research to understand my condition and it was then that I found the Institut Chiari & Siringomielia & Escoliosis de Barcelona, and I contacted there directly. Everything went well, they listened and I decided to undergo the sectioning of the filum terminale procedure to put a full stop to my suffering
Today, it is one month ago that I was operated and I am really well. I had symptoms such as: headaches, loss of balance, a lot of pains ind hands and legs that were terrible. I lived in hell. I lived hidden away because of how much I was suffering and the intense fatigue. Today I no longer have the headaches and my balance loss has disappeared almost completely. I still have some fatigue, but it is very mild and my pains have been reduced by fifty per cent.
The Institut Chiari & Siringomielia & Escoliosis de Barcelona saved me. Thanks you Samantha thank you Dr. Salca, thanks everybody. I’d recommend to stop searching, to stop asking yourselves a thousand questions. Come to ICSEB, they are nice. It’s easy. Knowing that we are so lucky to be able to come to Barcelona, we should do it.
Thanks to everybody.

Hi everybody!
I want to share an article with you that I wrote in 2010 where I describe my difficult journey trying to find a physician who would heal me. Back then I did not know if what was being offered in Spain was the truth or not, so to get real information, I decided to make my story public online.
I am the third patient from China who went to the Institut Chiari de Barcelona. On eof the first Chinese patients called me and said to me: “Wang, your story really moved me and I wanted to assure that it is not an Urban Legend, it’s true! I just came back from Barcelona and the surgery that they recommend WORKS!” She told me everything about her experience and how she got to the ICSEB.
I decided to share my story so that people do not choose the wrong path. The treatment in Spain is the wisest and most correct option. If I could have done the sectioning of the filum terminale 20 years ago, I would not have had to go through all of this painful experience.
I am very happy today. Even though I still have trouble walking and sometimes with a cough with vomiting, I am much better than before. The most important thing is that our disease has stopped and was really our ultimate goal.
Barcelona is a very nice city and even though I rested in the hotel for the first days after the SFT because the wound was a little tender, on the third day I was already out doing sightseeing with my husband, eating seafood, going shopping, etc.
My Email: [email protected]

———— My story published on the Internet in 2010———–
“A bitter journey”

I am Nieves Wang, I am 49 years old and as most people, I have a happy family: a wonderful daughter and husband. Nevertheless, my life is not as great as it seems, because I have rare disease (Arnold-Chiari Syndrome I) and I live everyday with stress, pain and panic because of it.
I realized more than 20 years ago that I walked in a manner that was not coordinated and, sometimes, I would stumble into doorframes. I was very busy with work, the family and my daughter back then. I didn’t pay much attention to these small problems until I started falling when bicycling, I needed to really focus to be able to hold my balance, I had to stop wearing high heels and was not able to look after my daughter anymore. It was 1991, and together with my husband we set out on a long search for a doctor who could help me.
The doctors that I saw said very different things: some said that I had rheumatism of cerebral atrophy and again others said that I had cerebrovascular problems. I saw many doctors, as much from occidental as from oriental medicine: I tried acupuncture, the electric treatments and I even went to see a sorcerer; but nothing improved my illness and my problems continued to increase.
Until one day, a doctor told me that I was suffering form a rare disease that could not be healed with any medication, but with a surgical procedure that brings many risks with it and does not stop the disease. So his recommendation was to follow conservative treatments.
Time went by the year 2000 came. During that period I already had a number of symptoms like: lack of balance when walking, lack of stability standing up, cough and vomiting, headache, insomnia, etc. On 19 October of that same year I reluctantly accepted the suboccipital craniectomy and I will never forget the pain I was in. The surgery lasted five hours and I had 14 stitches in the head. I had fever for a month following the surgery.
My husband and my sister took turns in looking after me at the hospital. My husband slept sitting next to my stretcher for 36 days. I was very emotional and thankful but my eyes filled up with tears when I saw him so tired and worried.
I had some improvements after the surgery, but with time my disease continued to get worse. When I left the house, people used to say to me: “But what is wrong with you? Drunk already in the morning? You will suffer a brain stroke if you drink so much” Do you see what people are like? I don’t know if laugh or cry about their comments and mocking looks. I was jealous of the healthy people who walked well and dreamt of wearing the beautiful high heel shoes I saw in the shopping malls.
In 2006, after saying good by to my daughter who was leaving for university, my husband accompanied me once more to Bejing to see a “specialist”. Upon seeing me he asked me: “What have you come here for if you already had surgery? This disease cannot be cured” and he finished the consultation with these cold words. I was so hurt that I started to cry. I told myself: “Yes, it’s true, I can’t put myself through more surgeries, I’d prefer to die before going through another craniectomy!” Back then I was was not walking in a coordinated way, I lacked stability when I was standing, I had a cough and had to throw up badly, I had difficulties to swallow and insomnia. Despite it all, I never gave in. I started to look up information about my condition. I was looking to find a miracle every day, an advancement in medicine. I knew that the progression of the disease would lead to sphincter incontinence and paralysis; there are even cases of death due to the pain….would that be my future?
In 2010, the follow up MRI reports showed that there was a descent of the cerebellar tonsils of 3.00 mm. By chance, I found an institute that is specialized in this illness and say that they can stop the progression of the disease. They offer a procedure with a minimally invasive technique that takes 45 minutes only. It was not painful and you were discharged from hospital on the day after the surgery. I was really excited about the news for days! I couldn’t believe it, was it a legend or a dream?? I am hoping to have calm and happy life, and not a bitter journey.
Nieve Wang 10 May 2010.

Twenty years. That is how long Brazilian Alessandra Cantuária de Araújo had to wait before getting the right diagnosis. The patient suffers with the Arnold-Chiari Syndrome Type I, idiopathic Scoliosis and Syringomyelia. Her body was hurting due to the conditions and she had headaches often, as well as other Symptoms. She talks to us about how she saw many different doctors in this testimonial and how they informed her that the origin of her complaints was to be found in diseases such as fibromyalgia, rheumatism, trigeminal neuralgia or depression.
“They did not know how to treat me anymore, so they decided to refer me to psychiatrist because `my soul was ill and body suffering´. But I don’t have depression, or fibromyalgia, or rheumatism or any other disease; what I have is called Chiari Malformation”.
After doing more tests she found out that other than the Arnold-Chiari Syndrome Type I she had Scoliosis and Syringomyelia. That’s why she started to research theses conditions and that is how she found a testimonial online where somebody was talking about feeling much better after having undergone the procedure in Barcelona. “I researched so much before coming, I read many testimonials and never found any that would say the contrary, not in Portuguese or in other languages”, she explains.
Alessandra decided not to undergo the decompression surgery as she had been recommended and travelled to Barcelona for her operation. She tells us that six hours after the surgery, her symptoms had already changed: the headache, the pain in neck and shoulders had disappeared as well as the pressure she was experiencing in her nape. Moreover, her strength had returned to her hands and legs.
“Here, as well as in Brazil, no one promised to cure the disease, but to stop its progression; in this way, the condition does not get worse. But I am telling you: my symptoms have improved a lot, up to the point where I can say that about 80% have disappeared. I now have a new life and I going to get ready to live it without pain, even if I don’t know how to do that. I did not know what it was like until the 28^th of February.”
 Alessandra would like to encourage everyone to spread information about the procedure of the Sectioning of the Filum Terminale so that more physicians can be familiar with this method. To end, she thanks her family and friends for their support, and also Dr. Royo “a person who does not measure the sacrifices to spread the improvements of his patients, to make the method known, wishing human beings all the best”.
She also expresses her gratitude towards Dr. Salca, a man of “a simplicity, generosity and humanity that cannot be measured”. The patient also wants to thank the Brazilian contact person , Marta Orsini, and the entire ICSEB team, a team that according to her “embraced and welcomed us”.
E-mail: [email protected]

Surgery date: 12/1/2016 Date of filming: 8/5/2017
Ginevra Mari is an 18-year-old Italian patient who, in her mother’s company, tells us of her experience with the condition, from the first mild discomforts through to the progressive worsening to the surgical procedure of the Sectioning of the Filum terminale. She wanted to take advantage of her visit to the ICSEB for a check-up appointment one and half years after the surgery to record this video-testimonial and share her story.
She reports that she had mild discomforts since she was little, especially in the right body half and also in the head. She never paid too much attention to them and thought that they must be due to growth.
At the age of 15 she started to suffer with strong headaches, loss of strength in the right arm, not being able to walk well, she had balance problems and discomfort in the right leg. She then decided to see an orthopaedist thinking that her problems could be due to posture; but apparently nothing had to do with posture.
She then started her long journey of consulting with different physicians all over Italy without finding an explication for her problems and furthermore she found herself worrying, as she did not know if her problem was psychological or physical. In late September 2015 she started to have stronger discomforts in her arm that kept on getting worse over time until it was almost fully paralysed. She went to art school (high school) and could not sign her name or draw; she could only sit the oral tests. She continued her pilgrimage from doctor to doctor without reaching a conclusion until she was hospitalised in Rome and diagnosed with syringomyelia with a magnetic resonance scan. Ginevra did not even know anything about the condition and searching the Internet, she found a connection between many of her symptoms and the disease. Her for someone who could help her continued, as she kept on getting worse: she had one body half almost paralysed. She spent her time in bed, without a social life and having had to give up school.
One day, not knowing what else to do, she did an online search of the name o her disease and found the Institut Chiari de Barcelona. After reading the testimonials published on the website and speaking with a few patients, she decided to send in her test results and to make an appointment. It was 23 December 2015, and the doctors at the Institut Chiari explained to her that if she did nothing, her condition would get even worse, so she took the decision to undergo surgery. She underwent the procedure for the Sectioning of the Filum terminale on 12 January 2016. She tells us that the improvements immediately after the surgery were unbelievable, with a great happiness for all of her family: she started moving her right arm and regained her ability to write. Some of the problems are still there, like the headaches or the electric currents, even if only on the right hand side. She can now move her arm very well and is drawing and sewing again. Later, in Italy, she underwent other pretty complicated surgeries but the improvements from after filum terminale procedure persisted and she is very happy with that: “I am very happy with the outcome, I would have the operation a thousand times over”, she tells us.
Ginevra’s Mom tells us of the long and difficult journey that the whole family had to endure, with pain but at the end with hope, because when they arrived at the Institut Chiari a new world of recovery opened up for them. She says: “If you have any doubts, send in your tests results and the doctors will be able to answer them. If you have to deal with this experience, do it with faith, because a year and a half after the surgery we can only tell you how well it went.”
With this video, Ginevra and her mother want to express their gratitude towards Dr. Royo, Dr Fiallos, Dr Salca, Gioia Luè and Elena Vitturi, toward the entire Institut Chiari because thanks to their tenacity, Ginevra is in safety.
Ginevra: +39 327.2656160 Mother: +39 324.7987942

Surgery date: 27/10/2011 Filmed: 28/06/2017

Mr. Augusto Curreli, from Cagliari (Italy), and his wife, explain their experience starting with the moment of diagnosis of the disease. The patient explains that at that time he had several symptoms: pain, headaches, lack of sensitivity, difficulty walking, urinating, etc.
Once they found the Institut Chiari de Barcelona, the patient went to Barcelona for an appointment and he underwent surgery in 2011 using the Filum System® method. He explains how, he felt reborn after the surgery: the pains and headaches disappeared, the sensitivity returned and he controlled sphincters and the gait.
In 2017, after his check-up visit 6 years after the surgery, he believes -from a subjective perspective- that he has improved by 60-70%, with the doctor’s agreement (from an objective perspective).
The couple advises patients to go to the Institut Chiari & Syringomyelia & Scoliosis in Barcelona, where they can only help them with their professionalism!
Mail: [email protected]

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: July 2015

My son started to have symptoms at the age of three. We saw different paediatricians and neurologists and they ordered magnetic resonance scans of the skull and brain. Nothing indicated the diagnosis. He was treated as a boy with headaches and asthma, but there was something that told that that was not it.
He continued to play and run, but he complained of pain in the neck and breathing difficulties. His complaints started to intensify and became more frequent until one day, at the age of five and while he was playing tag with his cousins, he came up to me and could hardly breath. Even though we were at a part y, we went back home to fetch his inhaler and it was then that he fainted. That moment I thought I had lost my son. Something told me that he did not have asthma, I know very well what it is like (I am asthmatic), and he did not have migraines either.
I requested a new MRI scan the next day. The neurologist asked us to consult a neurosurgeon urgently. When the day of he consultation arrived, the neurosurgeon recommended to do a decompression surgery as soon as possible. Back then, my son could not even smile, because the effort of trying to do so caused breathing difficulties and every time we had to rush to the hospital. The lack of air can be explained by a compression of the medulla oblongata, responsible for breathing. His medulla oblongata was being pressured quite a lot by his cerebellar tonsils.
He underwent surgery on 5 June 2013. The post-op was very difficult: Leonardo had a lot of pain, he was throwing up a lot and he had to be taking tramadol all the time. He was in the ICU during four days, and discharged from hospital two days later. He was not even able to lift his head for more or less two weeks. It hurt so much. The recovery was very difficult.
The first nine months after the surgery, he was doing well. Afterwards, he started to have the same symptoms once again, but the headaches were now daily and accompanied by nauseas and vomiting.
We saw the neurosurgeon again, who advised to have a new surgery, this time, a more aggressive one. We did not want him to have it, on top of the involved serious risks, the physicians wanted to place to plates in the cervical area reducing the mobility of his neck by 40%. He would have to live like he was wearing a cervical collar for all of his life.
In July 2015, we went to Barcelona. There, other than Chiari, they diagnosed a starting Syringomyelia. They performed surgery on 16 July and he was discharged from the hospital on the next day. Leonardo was not in a lot of pain, only in the area of the surgery. He did not vomit nor did he have headaches. On day five post-op, we were already visiting different of Barcelona’s tourist attractions. We travelled on the subway during the whole day and he never complained.
Leonardo is currently leading a normal life: he plays, runs and trains at a football school without respiratory difficulties. He rarely has headaches and the sensitivity has returned to his feet. His voice, which used to be nasal, has improved, and he rarely complains of backaches.
He is more motivated and ready to go to school, even though before he did not want to go not even on a reduced timetable (he used to start at 13:00 and finish at 15:00 o’clock).
I can confirm that he has suffered very few pain episodes since he underwent surgery in Barcelona. I admit that in the beginning I was scared to take him to Barcelona, because I did not know any physician who recommended this surgery, but I went over there thanks to the testimonials of Brazilian patients who had undergone the procedure.
The surgery was certainly beneficial for my son and this is why I recommend it to everyone suffering from Chiari and Syringomyelia.
Feel free to contact me for further information.

Date of surgery: 01/09/2016 Video recorded on: 21/09/2016

Marcio and Daiane, the parents of 4-year-old Fellipe Gabriel, wanted to share in this video their experience about obtaining the right diagnosis and how they found a treatment for their son. His mother tells us, that the boy started to have a lot of headaches, he was sleepy, he did not feel like going to school and was losing strength and mobility.

“It has been a long struggle to arrive here, at the Institute”, explains Daiane. She consulted different doctors who told her that her son would have to live with the pains. There was the option to have him undergo a craniectomy, but that would not have help much according to the same doctors and it could be that it would do him more damage than benefits.

She therefore decided to research the Internet and that is how she got to know other mothers. She started chatting with them and discovered the ICSEB. “I researched the Institut, but I did not think that it was going to be possible. We did not have the financial means so that he be operated here in Barcelona”, she explains. But, she she realized that the only option that she had been given in Brazil was the craniectomy, which she did not believe to be feasible because of the possible sequelae that could come with this kind of surgery, she and her husband started a campaign to raise funds for their family’s trip to Barcelona.

Almost a month after the surgery, Daiane is already celebrating some of the changes she notices in her son. “Fellipe was affected by a loss of sensitivity that I had not noticed, and now he only has improvements. So I recommend it a lot [the treatment] for everyone. Investigate if you have doubts. Do not settle with the first diagnosis, the first doctor. You have to look out for yourself, research on the Internet and do not be scared to go abroad, do not be scared to start a campaign [to raise funds].”

To end, Marcio, Fellipe’s father also wants to transmit optimism and encouragement to those who are now living with the same uncertainty that his family experienced. “There is no need to be afraid, you have to fight, and everything will go well”.

Contact email address:

Little Lucas’ New Life

6-year-old patient Lucas José’s parents tell us in this video about their experience from the moment they learned of their son’s diagnosis (Arnold-Chiari Syndrome Type I, Syringomyelia, Scoliosis and Hydrocephalus) up to their last check up appointment here at ICSEB, 30 days after the Sectioning of the Filum Terminale procedure.

“We think that from today onwards, Lucas has a new life and that he is well”, says a relieved Everson Angelo after having accompanied his son through an intense time starting in May 2016. It was then that he and his wife, Lucineia Angelo, found out about the diagnosis. After speaking with the neurologist in charge of Lucas’ case, both were left very worried. The only option they had been given was the craniectomy, “a very invasive surgery that could leave sequelae.”

It was then that the couple decided to research on the Internet to fid out if there was any less invasive treatment for their son. That is how they ended up on the ICSEB website, and this also created doubts for them.

“We were left rather afraid… is this for real? I think the first thing that came to mind was: can this be true? So we started to investigate and found out that other Brazilians had come here. And there were many people who had given their testimonials, who had shared in video and text, who had come here and really found a solution. So we decided to bring Lucas here”, says the patient’s father.”

In order to make the trip to Barcelona viable, their family together with the support of many friends, joined forces for a fundraising campaign. “Thank God we achieved it and were able to bring Lucas here (…) The surgery was very calm, the procedure was very calm, the Institut gave us complete security, he was assessed thoroughly and then he was also assessed afterwards in order to evaluate the progression after the surgery”, he says. Everson says that there was an improvement in many symptoms that Lucas had before the procedure, especially in relation to the sensitivity in the limbs.

Everson took the opportunity of recording the video to thank all those persons who helped them, in Brazil and in Spain. He concludes: “If you have doubts, if you feel scared to travel to undergo this treatment; don’t. I think that if we have this option with proven results and it can be an alternative to another more aggressive treatment; don’t doubt and come!”

We are writing this testimonial hoping that others with the same conditions as our daughter Kazuko who have found the Institut Chiari de Barcelona website will consider a foreign medical centre as an alternative to treat. We can only thank the team at the Institut Chiari de Barcelona.

When our daughter was eleven years old, and with her rapid growth, her posture kept getting worse, she tilted towards the left. We told her every day to correct her posture. We did not think that it was necessary to get x-rays or MRI scans. We just thought that she adopting a bad posture. Kazuko had her first symptom in February when she was 13 years old; it consisted of tingling in her left leg. Later on, she had tingling in the left hand, dizziness, headache and vomiting. They found the diseases Kazuko was suffering from when she had magnetic resonance scans at our neighbourhood’s hospital.

The scan’s report read a diagnosis that we had never heard before: “Chiari I malformation” and “Syringomyelia”. We did not understand the severity of the conditions, but we do remember that the physician turned very earnest when telling us. He told us that the only treatment for the conditions was surgical, and moreover in the head! We were very afraid, because our daughter had never had a serious illness before and had enjoyed good health. Kazuko did not expect undergoing a surgery either.

When we arrived at home, we started to look for information on the conditions. Everything written on the diseases was only negative. Reading this terrified us. Nevertheless, the content of the Institut Chiari de Barcelona website was completely different and offered us a ray of hope. Albeit, we were astonished when we found out that the Sectioning of the Filum Terminale is not performed in Japan. We immediately contacted the Institut Chiari de Barcelona staff, Mrs Takahashi. At that time, our daughter’s symptoms were not improving and she was not able to attend school. We were undecided between going to the hospital in Japan where more commonly craniectomies are being performed, or going to the Institut Chiari de Barcelona. We went with the first option because we could not see our daughter having the strength or spirit of travelling to Barcelona. We contacted again with Mrs Takahashi and told her that we were very sorry but that we had given up on going to Barcelona. Most probably we would have taken the decision to go to Barcelona, had Kazuko’s symptoms been milder.

Finally, in April 2015, we were able to book the craniectomy at the Tokyo hospital and she underwent surgery after having changed hospitals several times. The post-operative period went very well and we were very happy because our daughter’s painful symptoms disappeared completely. All our family was happy with the successful Craniectomy.

(Regarding her scoliosis: after the Craniectomy, Kazuko went to a general hospital in our neighbourhood that has scoliosis experts. She then had a scoliosis of 25 degrees. Nowadays she wears a brace, but only during the night.)

In August 2015, three months after the operation, we went to the hospital in Tokyo for a follow up and also had the intention of visiting tourist sites in the capital, given that no symptoms had reappeared since the Craniectomy. Kazuko had new magnetic resonance scans done at the hospital and the physician told us that they would have to operate to place a shunt in less than a year because they were not seeing a reduction of the syringomyelic cavity and that the cerebellar tonsils had descended a little. His opinion was the last thing we were expecting, because it seemed that Kazuko was in perfect shape. Of course we trusted the doctor, but we were holding off having our daughter undergo a shunt placement surgery.

My husband and I were feeling lost again, but in the end we decided to go to Barcelona. Our daughter now had the strength to withstand the long trip and because of Mrs Takahashi, who treated us with the necessary sincerity trust the Institut Chiari de Barcelona. The aim of their treatment, the Sectioning of the Filum Terminale, is to “eliminate the cause of the diseases”, and that was very convincing. We started discussing the possibility of going to Barcelona in the whole family and reached the conclusion halting the conditions was the most important for our daughter as she has her life still in front of her, and if there was a specialist centre for her conditions, we were prepared to go there to get treatment, even if it was abroad. And above all, the Sectioning of the Filum Terminale was less invasive than the shunt placement. So we decided to go to Barcelona.

We took the plane to Barcelona in March 2016 and after spending one night at the hotel, we went to the Institut Chiari de Barcelona. Our daughter was had the appointment with Dr Fiallos and we listened to his opinion through Mrs Takahashi’s translation. Once the consultation was over, we went to the CIMA Hospital to do tests. We had absolutely nothing to worry about given that Dr Fiallos as well as Mrs Takahashi treated us with affection; my husband and I were able to be very calm on the day of the procedure and sure that also our daughter was feeling the same.

The surgery went well and lasted less than an hour. I stayed over night with Kazuko at the CIMA hospital and we were surprised at seeing the hospital room, because it was so nice it seemed a hotel room!! Given that we were told that walking was recommendable after the discharge form hospital, during the ten days until the next appointment, we tried to take walks as well as we could. Before leaving Japan we thinking that it would be nice if we could spend at least day doing tourism in Barcelona, but we had such a good time during those days as if tourism had been the main objective of our stay in Barcelona.

Many thanks to the entire team of the Institut Chiari de Barcelona. We pay our respects and our heartfelt gratitude.

Surgery date: April 2016

My name is Faisal, I am Abdallah’s father, he a fifteen-year-old boy from Saudi Arabia. I allow myself to tell you my son’s story, as it has been his mother and myself who have experienced his suffering in flesh and blood.

Abdallah’s probleme started with the atrophy of his left hand and the loss of sensitivity up to 50% in his left body half. Then he began to have more symptoms such as dizziness, cervical muscle contractures and pain in the upper back that intensified after a fall from a horse.

From 2015 onwards, his state deteriorated visibly and this is when the doctors in our country diagnosed syringomyelia and indicated a conventional surgery urgently.

I doubted a lot and decided to search on the Internet for the best specialist physicians in the field and I found the Institut Chiari de Barcelona and Dr. Royo Salvador and his wonderful team, and not to forget Dr. Marcos Fiallos, a great professional with a wonderful way to look after us…

I immediately contacted the Institut through the contact person for Arabic speaking patients, Mrs. Safaa El Idrissi, the “unknown soldier”, who helped us in everything and scheduled the first consultation with the physician on 20 April 2016. After the appointment, the doctor reached the conclusion that my son should undergo the sectioning of the filum terminale procedure and so he did on 21 April. The surgery was a success.

Abdallah’s state has clearly improved; I want to thank Dr. Marcos Fiallos and Mrs. Safaa and the rest of the Institut’s team.

The patient’s father. Mr. Faisal Saad Al-Juhani Contact: [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]

Date of the video: November 2013

Hello. My name is Marie-Pierre Mazière, I am 51 years old and I have just been operated through the Sectioning of the Filum terminale method. My syringomyelia was discovered after many years of diagnostic confusion; I went through rheumatology and neurology services and finally after doing a MRI, my syringomyelia was discovered which, I think, would have been there for a long time. Since 2011 my state was followed-up by the reference centre in France. I immediately had problems in walking, had incontinence, balance problems, and the most complicated were the pains during the day and night and didn’t use to get relieve with many medicines that I was taking.

In 2013 my overall condition worsened with loss of sensation, first at the level of the fingers and then overall.

After a meeting with a neurosurgeon who was looking into my case, I immediately understood that my situation would remain as it was. I felt desperate. I refused to give up when I didn’t find a treatment that would have helped me to improve and I started looking online. I found the Institut Chiari team.

I decided to send my medical documents to have their opinion and very quickly I was offered an appointment that I accepted. During my medical consultation it seemed important to me to know what everything was all about and I was given a very clear explanation about the Sectioning of the Filum terminale and the effects it could have on the detention of the disease’s symptoms. I thought this could be beneficial and at the end of the visit I was sure that I wanted to get operated.

I accepted to get operated, which took place on September 26, 2013 and in the follow-up visit one month after the surgery, I can say that a great part of my symptoms have disappeared or have improved, above all I no longer have pain, I walk normally; the situations that caused me many problems.

It is a simple and safe treatment that can improve the quality of life and also restore sensitivity and motor skills. I am very happy with what has happened to me and I try to enjoy it. It’s a blessing.

An update to the video:

Date of the video: September 2016

Hello, I am Marie-Pierre Mazière. I came to the Institut Chiari for a follow-up three years after the surgery. I was operated on September 26, 2013 because I had a relatively important syringomyelia. At the time of the surgery, I was losing my walking ability and I had difficulties. After 3 years, the things have improved. My syringomyelia is diminishing and I have again found the pleasure of walking, of being able to commute and become head of services in a socio-medical centre, I can work full time and I enjoy it fully.

I am grateful to the Institut Chiari for accompanying me in this fight, which has been a difficult period of my life.

My contact email: [email protected]

Date of Surgery: 21 April 2015 Date of the video: 2 May 2016

Hi, my name is Christine. I am 36 years old. One year ago, I was operated with the Sectioning of Filum Terminale technique in extradural zone.

My symptoms started when I was 32 years old and were very severe. One day I woke up with strong headaches that oppressed my head and neuralgia throughout my body. The pain used to pass from one joint to another, shoulder, knee and arms. These pains were terrible and did not let me live peacefully for 3 years and after those 3 years is when my illness was discovered.

In France, this disease is only operated with the craniectomy technique, which I did not want them to apply to me, especially because the doctors there wait and do not practice this surgery until the patient is in a wheelchair and obviously I did not want to wait until this point. So I contacted the Institut Chiari de Barcelona and I was operated there. Since then, I am leading a new life. I have recovered my professional, social life as it was before I was 32 years old, normal.

I thank the Institut Chiari wholeheartedly; I thank Dr. Royo, Dr. Fiallos who operated me, and the whole team of the Institut Chiari de Barcelona.

Inés Grases Pintó, pharmacist

Owner of the pharmacy.

Place of video shooting: Farmacia Grases Pintó

Date of video shooting: 12^th of April 2016

 Farmacia Grases Pintó is an establishment fully independent from the Institut Chiari. Its pharmacist Inés tells us the experience of the pharmacy’s staff that they have while attending the patients from the Institut who go there for buying their prescribed medicines after getting discharged. She explains that it keeps surprising them that although the entrance of the pharmacy has stairs, just after 24 hours of the surgery the patients go upstairs on their own.

 From the reaction of the patients and their families it is noted that they are very satisfied from the treatment, the result, and improvements they have achieved and the pain they have lost. When many patients return after 2 months for the check-up and go to buy the medicines, they tell that these improvements are maintained. It must be noted, says Inés, that these persons had spent years with their health problems and pains that prevented them from leading a normal life.

Although the pharmacy staff speaks English, French, Italian, Spanish and Catalan, as the people around the world come to Institut Chiari to get treated, for example people form countries in Asia, Russians, etc., sometimes patients are accompanied with the staff from the Institut who speaks their language to facilitate the purchase of medication. She also highlights the nice and very professional behaviour of the patient’s care assistants (staff) of the Institut Chiari, a center of reference in its field, associated with the diseases of the central nervous system.

MR images of Melaine

Before the SFT

After the SFT

Video Testimonio de Asibe

My name is Asibe Asllani and I am 43 years old. I was born in Albania, but since 1994 I live in Italy. Here, in 1995, I met my husband Valentino whom I married few months later. We have three daughters, Valentina born in 1996, Melanie and Jennifer, twins, born in September 2004.

The story I am going to tell may sound incredible, however I went through it myself and therefore I would like to share it in order to relieve a bit the load I was carrying all these years and also to give hope to those who may be going through a similar situation.

Everything started with the delivery of the twins, when my physical problems, which I had been feeling before, since I was 14, got worse. After different tests and exams I discovered that I had a severe kyphoscoliosis, what could explain the protuberance that I had on my back since I was a child.

I started several physiotherapy cycles in order to relieve the pain I was feeling in my back, however the treatment was helping only for short periods of time. In fact, each time I stopped the cycle, the pain was back.

I have also tried different analgesic therapies that were not helping much either; to the contrary, they have caused me a hiatal hernia of 4^th grade.

Around this time Melanie, who was not even one year old at that time, one day of September 2005, had three convulsive crises in apyrexy. After her initial admission to the hospital in Gubbio, she was urgently transferred to the hospital in Perugia.

After various exams it came out that she had an active cytomegalovirus, Mediterranean anaemia and rotavirus, and the doctors were sustaining that the convulsions she had suffered from were the symptoms of that.

From my side, I asked to perform a resonance in order to analyse better the health state of Melanie, due to the fact that she was only 11 months old.

The resonance showed that Melanie was suffering form the “Arnold Chiari” type 1 malformation, but the doctors were saying that it was nothing serious.

The baby was growing slower compared to her twin sister Jennifer, she was late to walk and suffered from constipation. Later, in 2006 when she was 2, we repeated the resonance that confirmed the diagnosis of the syndrome.

I could not stay calm any more as I was seeing something strange in what was going on. For that I have asked for a neurosurgical consultation during which the doctor got rid of me saying that I was a too apprehensive mother.

Melanie started getting worse, she was continuously crying, bending in half because of the pain. In March 2008 I asked to repeat the resonance for the third time, which at this time revealed also a Syringomyelia from C4 to D7.

Since her first admission to the hospital in Perugia, Melanie was transferred to the Gemelli hospital in Rome, where on the day of my 39^th birthday she was submitted to the first surgery of a suboccipital mini-craniotomy, lysis of the tonsils and plasty of the dura mater.

Three days after the surgery Melanie started to lose the liquid through the wound and they kept her for observation and therapy for 20 more days.

They performed a control resonance on the 30^th of May 2008 and took her for another surgery of a cerebrospinal fluid fistula.

After a week she was discharged form the hospital and we went back to Gubbio. However, Melanie kept feeling sick and she was loosing the balance even when seated. After another resonance we discovered that the Syrinx have had extended and was now from C1 to D11.

Together with my husband we started to go around Italy asking for opinions of many doctors and specialists from Udine to Bologna and from Florence to Rome. They all were suggesting another head surgery but we decided not to submit our daughter to another similar procedure.

This way we arrived in summer of 2010, when during a town festival we met two people who were talking exactly about this disease. One of their acquaintances solved a big part of her problems during a minimally invasive surgery in a private facility in Barcelona.

I researched more information about the disease on the Internet and I was surprised that there are so many people in the world affected by Arnold Chiari. Bravely, but also with a lot of fear I started to take seriously the possibility of taking Melanie to Spain. However, before, I wanted to meet the lady, a fellow citizen, who had the surgery.

I took her contact and after some time I had a very special meeting with Rosanna Biagiotti, who beside welcoming me with kindness and availability also explained me way more about the disease she was suffering from than the doctors I had consulted. After telling her my story and the torturing path that we had been facing with Melanie, she convinced me to directly book an appointment with the doctor who performed her surgery.

In November the same year, together with Melanie we travelled to Barcelona. I was full of hope to find the answer for our daughter suffering there. While we were sitting in front of the Doctor, Melanie was drawing his and another doctor’s face on a notebook sheet and Dr. Royo was studying all the resonances I brought with me.

He suggested performing Melanie’s surgery immediately for there was an imminent risk of cardio-respiratory crisis, as she was suffering from sleep apnoea, which could cause her death. The Doctor explained in detail what the surgery (the sectioning of filum terminale) consisted of and of course its costs.

After the initial disconcert, as our financial conditions were not enough to pay the required amount – please keep in mind that at that moment my husband was unemployed and I was working only part time – I decided that I had to do whatever it takes in order to proceed with Melanie’s surgery. I was seeing in that Spanish adventure, in Dr. Royo’s words and in the testimonies of people who recovered well after the surgery, the only possibility that was left to save Melanie.

I went back to Gubbio with the exact intention to find the necessary founds to cover the costs of the surgery. Right away I contacted the priest from my parish that, together with the girls’ paediatrician, decided to help me.

They put me in contact with the “Agnese” Association, which was responsive to my situation and disposed to fully cover Melanie’s surgery.

Within few weeks the money was collected and within a month Melanie, my husband and me were on our way to Barcelona. This time it was noticeable that the hope that I have not lost during all this time was about to pay me back for all the fear and fatigue I went through.

Melanie had the surgery of the sectioning of the filum terminale in December 2010 and right away we were able to notice big positive changes. She was saying that she was ok, and she was not crying any more!

Within 3 days after the surgery she was discharged from the hospital and we went back to Gubbio. It seemed like it was all going to be well, as Dr. Royo told us, and it was! I could not believe it!!! Many of the symptoms Melanie had before the surgery have disappeared… Melanie was starting to live!!!

In January 2011 we went back to Barcelona for the check up and we also took the twin sister Jennifer, who until then was not having any symptoms.

Since the first meeting, Dr. Royo asked me to bring all the resonances I had, also those of myself due to my scoliosis, for it was very probable that my problems were also associated with this malformation.

Until then my biggest worry was Melanie, and consequently I did not provide what he asked me for. I had also been convinced that even if I were operated, it would not help my scoliosis for it was very advanced… Therefore, I was postponing my turn.

What was more important for me at that time was Jennifer and so we asked for a detailed resonance of her spine. It revealed that she also had been affected by the Arnold Chiari malformation with oedema and spinal cord traction.

Two months later Dr. Royo was at a congress in Italy, and in order to avoid another trip to Barcelona, we went to Trieste with Jennifer’s results to meet him there.

Royo confirmed the same pathology in the other twin, and therefore I repeated the same steps I took in case of Melanie, I contacted again the Agnese Association, which again decided to cover the surgery.

On the 21^st of December 2011 Jennifer had the surgery and everything went perfect.

We went back to Barcelona for a control check up in February 2012, and at this time I have brought my own resonances and also the results of my oldest daughter Valentina, who at that time was not having any symptoms.

Dr. Royo explained to us that it was probably me who had the Arnold Chiari malformation at first place and, being a genetic disease, I passed it to my daughters. Consequently, Valentina and me also had to have the surgery.

I spoke again with the Agnese Association who again was willing to pay, this time for Valentina’s surgery. For my intervention on the other hand the ADA Association started to collect founds.

I went through the surgery first, on 22^nd of May, accompanied by my dearest friend Debora, and within a month Valentina closed the cycle.

With a big surprise, as I was experimenting it on my own body, I realized that the surgery was providential for my condition. In fact, even though the scoliosis was still evident, I was not having the pain I had had before the surgery, I felt more alive physically and spiritually… I had much more strength and I could not figure out where it was coming from.

At that time I was very happy, and now after several months have passed, I am even happier. This experience let me to meet wonderful people who helped me and supported me giving me the strength and courage to face it all.

I am very grateful to Agnese and ADA associations that covered the costs of the surgeries, Don Luca, UNITALSI, Dr. Panata, Dra. Marzia Leonardi, Rosanna Biagiotti, and many others. You all have my gratitude. And above all I would like to thank God who gave me the hope and faith.

In fact, today I am going to start the catechesis for adults in order to receive the baptism and the Christian sacraments… a way to thank Him.

+39 3292971877

Date of surgery: July, 2014

Date of the video: February, 2016-04-01

Lawyer Palillo conveyed us the testimonial of her personal experience with the FIlum disease and treatment of the sectioning of the filum terminale.

She explained us that in April 2014 she started to have terrible symptoms, especially very strong dizziness, with tremor, ocular pressure, decreased visual field and pressure in the ears. She mentioned that during several doctor visits, which she realized in Palermo, all of these symptoms were associated with a depressive state, but finally it turned out to be related to cord traction syndrome. In July 2014, she came to the ICSEB in a state of intense misery, for being accessed and getting operated by the technique of sectioning of the filum terminale.

In February 2016, she returned to Barcelona for getting examined the evolution of her state. The check-up showed a significant improvement in her quality of life: the more severe symptoms have improved; others have disappeared completely such as dizziness in a sitting position, pressure in the eyes and neck. Moreover, she gives the sensation of being liberated.

The advocate Palillo recommends the people suffering from this disease to consider the ICSEB as a center which offers a treatment that can really change their life. It is a very little known and promoted surgery, which has been decisive for her and for her family who have lived closely this disease.

With her testimonial, the advocate Palillo wants to thank Dr. Royo and the entire ICSEB team for the care received and the excellence of the treatment applied.

If you want to get in contact with her, please write her at:

[email protected]

Dr Antonio Victoria, Cardiologist.

Date of testimonial: 20th November 2015

It is a pleasure to be able to address the audience and also to say thanks for the many years of friendship with Dr Royo. I want to clarify that the research conducted by him in the pathology of Filum Terminale and the NCV.S is something that physicians should be aware of and consider. My testimony is full of gratitude and it’s because of what we have gone through in my own, my wife’s and my daughter’s personal lives. My wife is a doctor. She was suffering from this issue and had the cord traction disease and as a result of the brilliant operation from Dr Royo, she has recovered completely. Her thoracic hernias were treated perfectly well and have never reappeared since then. Her spine, that showed scoliosis since childhood, recovered and is now perfectly aligned.

The case of my daughter was more complex, with totally mixed and unspecific symptoms and a clinical picture that could have fit perfectly into a functional pathology that would have condemned a girl of 22 years of age to be bedridden. Then, we thought of this syndrome. She underwent the operation and we witnessed that 8 hours after the surgery all her clinical symptoms had disappeared.

My message is that we doctors must think that this condition exists in nearly 20% of the population and the relationship in the development of the diseases like Arnold Chiari I, Syringomyelia and Scoliosis is a common process and can have a close relationship. We must never stop thinking about it because it has an easy and great solution for the consequences that may have subsequent effect.

Many thanks to Dr Royo and his brilliant team for finally bringing happiness back to many patients, among them my wife and my eldest daughter.

 E-mail: [email protected]

Date of surgery: 10 October 2013

Date of video testimonial: 13 April 2015

I discovered the Institut Chiari de Barcelona on the Internet, thanks to my uncles. Once I had the syringomyelia diagnosis, I underwent surgery on 10 October 2013 and since then and until today I have experienced improvement of up to 90%. I feel like my life was given back to me, therefore my recommendation for patients with this disease is to approach this centre and to get in touch with this outstanding team.

For it as been an unforgettable experience.

Contact: Mrs De Armas: [email protected] / +34 696-210-111

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!

Surgery date: July 2014

Mrs Magdalena Frankowska from Poland tells u show she has been suffering from strong pain for 20 years. After years of searching and specialist appointments, a neurosurgeon from Nowa Sól diagnosed Arnold Chiari Syndrome and Syringomyelia. She was not ready for this diagnosis; and at the same time she was surprised by the physicians words, who advised against the suboccipital craniectomy and who told her that there was no cure for these diseases. Nevertheless, the neurosurgeon mention a new method that was being developed in Barcelona.

With the help of the Internet, Mrs Magdalena Frankowska found the Institut Chiari de Barcelona and contacted Kasia, who is responsible for patients from Poland. Today, three days after the surgery, she tells us that she feels much better. Before, she was afraid to get up in the morning and to go to the bathroom, and now she does not have this problem anymore. Mrs Frankowska has also noticed other changes: she walks differently, her hearing has improved, she does not have any swallowing problems, he eyes don’t hurt, etc. She feels better generally.

Mrs Magadelna Frankowska is aware of the fact that only three days have passed, but she already feels a lot of improvements, especially concerning her everyday activities. She advises against the craniectomy and recommends the Institut Chiari de Barcelona.

E-mail: [email protected]

Phone: 0048 609 475 103

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: March 2012

Hello to everyone. My name is Carmen Reyes, I am 32 years old and I live in Cartagena, Murcia.
I have to tell you that I have undergone surgery for a Herniated Disc in the C5-C6 vertebrae with irradiation to the arm (right Cervicobrachialgia) and I have the need to tell all those people who suffers from this type of hernia that there is a very good solution.
In 2005 and 2010, I was hit in a traffic accident, since then, I had discomfort in my neck and shoulders, typical muscle contractures that used to appear once or twice a year, without having other major consequences than to suffering 15-20 days with pain in the neck and shoulder blade, which with anti-inflammatory treatment went well.
But, in October 2011, I woke up overnight with a terrible neck pain, at first I thought that I had been sleeping with a bad neck position, I spent three or four days like this; I also felt my right arm heavy, as if it had a weight tied on my forearm. My arm didn’t hurt but it was very annoying. I spent a week taking muscle relaxants, anti-inflammatories and acetaminophen, in addition to the occasional metamizol. As the pain did not stop, I went to the GP but he was on leave and there was a substitute who, without getting up from the chair, told me that it would be contractures and I had to take tetrazepam at night for a week, paracetamol and anti-inflammatories every 6 hours. I said I had already been taking that for a week because it was what I was prescribed when I had the accidents. So he told me to go to a physiotherapist, if possible private, because  through social security it would take me at least three months.
I went to a physiotherapist, I explained my story and, without asking me for a MRI or medical test, he began to massage and twist my neck in all directions. After an hour, I was told to put on ice and that was all. After five days, the pain in the arm intensified and I couldn’t move my neck so I went to a private clinic and I was told I had cervicobrachialgia just by telling my symptoms. He gave me an injection and prescribed me corticoides for a week. The next day, the pain was unbearable and I went back again for injections. The doctor who was there asked me “does it hurt so much? Let’s see what’s wrong”. I explained my symptoms and he said “come on . I am going to give you a cocktail” and he gave me two shots. After, he asked me how I was doing but I was not good. My arm was still aching and I even noticed the first electric currents that were going from my neck to my elbow. He sent me home and told me I had to come back the next day to get the corticoide injection. This was just the beginning.
I spent the whole afternoon with electric currents, pain and a lot of heaviness in my arm, in addition to a burning in the back of my neck. The pain was so strong that at 5 AM of 15 October 2011 I had to go to the Hospital. They immediately took care of me and started to give me intravenous serums. It was getting worse, throughout the morning, they gave me two injections of morphine in each arm but they only left me with pins and needles in the area of the puncture and a lot of sleepiness without being able to sleep because it continued to hurt. It was like I was wearing a tourniquet that continuously pressed me, having pressure intervals and when I pressed hard my arm, it was horrible and I didn’t know how to position my head.
My doctor told us that I had to be hospitalized because they have to discover where the focused pain was coming from, and they couldn’t do anything else so they brought me to Santa Lucía Hospital. I was hospitalized for 45 days with all kinds of medication, specially dexketoprofen, morphine, and more morphine in addition to the dexamethasone to be able to calm these pains. The 15^th day, the neurosurgeon of Murcia, Dr. Alarcón did a medical examination, he asked me how old I was, I told him 31 and he made me squeeze my fingers. My husband asked him if it was mandatory to undergo surgery and his words literally were: “look, this surgery is very delicate and to give you an idea it is like going on a trip. You know the day you leave but not if you are going to arrive. What does this mean? You can stay in a wheelchair or paralyzed from the neck down. She is very young. We are going to wait another week to see if the medication is working”. He did not give me another option to choose, on the one hand I was glad, I am quite fearful of the surgery theatre, but on the other hand that much pain was not normal. That week turned into another month of suffering terrible pain, cramps, spasms, elelctric currents without being able to stand up from the bed until 43 days later. It was a neverending spiral and after I was another month and a half at home with medication (the shopping list, like my GP said). I had withdrawal syndrome, a week with sweats, chills, body pain, anguish, nausea, etc.
After two months only needing Ibuprofen, Paracetamol and Lyrica, in March, the nightmare of the first 14 days returned. It was a back and forth of pills that were not working anymore. I went to Santa Lucía Hospital and they put me on a tramadol infusion with anti-inflammatory and metoclopramide. The doctor asked me how it was going and I said my neck seems ok but not the arm and he prescribed me tramadol pills and voltaren and if in three days things had not calmed down, I would had to go back to the hospital. That night was not good at all and the next day, I had to go to the emergency room again. They gave me another infusion and nothing, just when they were putting me to bed, Dr. Victoria came and told me that they were going to start with soft medication and increasing the dose. He was paying attention all night but it was still the same, so he told us about Dr. Royo (an excellent neurosurgeon) and he was sure that if Dr. Royo were to perform surgery, I could be calm and fine in a month.
Immediately, on the early Sunday morning, Dr. Victoria contacted Dr. Royo and that same Sunday we went to Barcelona. Early on the Monday, and just with a physical check-up, Dr. Royo told me that it was mandatory to undergo surgery because, in addition to the herniated disc, the nerve of the arm was pressing on the spinal cord. He said that undergoing surgery would solve my problem. I have a lot of respect for the surgery rooms but Dr. Royo gave us the security and calm we needed and he spoke really well about Dr. Victoria. I will never be tired of thanking Dr. Victoria, because he threw himself totally into my case and without him I would not know Dr. Royo. I had to tell you that I underwent surgery on 20 March 2012 and now, 7 weeks later, I am like new. You cannot even imagine. It is incredible how good is to live without any pain.
I sincerely hope that all the people who suffer from what I had, can meet Dr. Miguel B. Royo.
Thank you very much Dr. Royo, I send you my warmest regards.