Surgery: 06/02/2020    

Olga Belova (Russia). We went to the Institut Chiari de Barcelona to receive help and treatment for our daughter’s intramedullary cyst. In Russia we were offered only an invasive treatment with incision of the cyst. Then we decided to follow a less invasive way. Many told us not to go to Barcelona and advised us not to have surgery there. They said it would be useless. But as our daughter felt a discomfort in her back, we decided to have the intervention of the sectioning of the Filum Terminale. The surgery went very well; the next day our daughter could walk by herself and felt almost no pain

Now, a year and a half later, she has minor back pain (although Olga hardly does sports because she is lazy). In the MRIs we just had, doctors have found that the syringomyelic cyst (which was 9mm in diameter before the surgery) has decreased in the wider parts to 2mm. And in other areas it has become filiform. We thank the Institute’s team for their work and wish you the best of luck.

Sincerely, Olga’s parents; Maxim and Alla.

E-mail: [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: February 2016

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.

  THIRD MONTH AFTER SURGERY

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]

Surgery date: March 2017    

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]

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]

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Date of surgery: February 2009

I am 41 years old, I am French and I am suffering from Syringomyelia, Idiopathic Scoliosis with herniated disc D6/D7.

Some years ago, in France, I was proposed only one solution for my problem on a condition that if I had been a little more “affected” and it was an aggressive and invalidating surgery to drain CSF from the spinal cord, which re-emerges in most cases and that I would not have risked anyways….

In late 2008, severely affected by the disease, I used to walk with help of a cane even sometimes two and even used to go on wheelchair occasionally. I used to suffer a lot especially on the left side with paraesthesia, tingling, electric currents. I also had urinary incontinence, migraines, dizziness that used to make me lose consciousness, sometimes in the middle of the street … I had become 80% invalid as per the MDPH (Department of the disability), with household help for day-today tasks … I could hardly drive and began to live as a “recluse”.

For a long time I was considered and treated as mythomaniac by the doctors (specially at the beginning of the disease), stuffed with medicines, I looked for the help in the discussion forums. It was then I discovered a surgery that consisted of stopping the evolution of the disease. I was seen in a very serious and comprehensive manner by Dr. Royo. Following this medical report, I had the surgery of the sectioning of the filum terminale on February 10, 2009 by Dr. Royo in Barcelona. This surgery changed my life! I felt big changes from the first day. First, when I got up, I felt the cold ground under my feet and no longer suffered the neuropathic pain that used to poison me and my leg had gained strength … Leaving the hospital, I no longer limped while walking. It was a beautiful surprise! I had been suffering for 9 years and was totally misunderstood by doctors in France! (Syringomyelia was detected in 2000).

In short, I remember having some “painful crises” during the weeks after surgery, but nothing comparable to what I had previously; I didn’t even need to take painkillers. No more treatments, no more physiotherapy, no more crutches!

The other symptoms gradually disappeared months after the surgery and eventually disappeared completely. Some of the dizziness that was left disappeared completely during 2012. I could feel comfortable on uneven ground.

Today (14/01/2015) I have come to the Institut Chiari de Barcelona for a follow-up visit for actually knowing about my transformation and to be sure that my reflexes have returned to normal and I can say that I am recovered up to 95%. The remaining 5% are some back pain, but only in the examination of palpation. Some tingling in the spine and small pains in the left arm are not maintained and are becoming less often. I don’t need to take any medication. The pain disappears itself. There is only reflection of the foot that is still a slightly abnormal, but I insist “slightly” … I’m fine, working almost full time for 5 and a half years ago. I am a home health aid.

I want to warmly thank Dr. Royo and his team for the reception and professionalism because without the SFT and without them, I would be today, without any doubt, in wheelchair … I want to clarify that Dr. Royo has never made me promises and he has never told me about healing. I am very aware of how lucky I am that I have recovered so many functions. Every body is different; let’s not forget it.

Mrs. Barbara BLACHE

I remain at your disposal to answer your questions.

Email: [email protected]

Surgery date: December 2013

Hello! Happy New Year! My name is Oleg, I am 36 years old, I live with my family in Almaty, Kazakhstan, and I would like to express my immense gratitude towards the Institut Chiari & Siringomielia & Escoliosis de Barcelona team for their work, especially Doctor Royo and Nina!

I had scoliosis since childhood. I practiced sports since I was little, I suffered traumas related to sport, or not, of different origin and kind. I didn’t do the military because of severe scoliosis. From the age of 20 I stared to notice the atrophy of the left hand, the thermal and tactile sensitivity disappeared, arm movements became more limited, and my strength slowly disappeared. Without paying any attention to the discomforts, I kept on living, thinking that the cause for all of this was the scoliosis.  At the age of 30, the hand became more atrophied, I had episodes of strong headaches, upper and lower backache, high blood pressure, a low defence index and I fell ill frequently. Together with all this, prompt fatigue, apathy and irritability appeared. The sport helped, my state got better for some time, but the hand kept on atrophying and loosing strength. The numbness of the leg started at the age of 35 years the headaches, upper and lower backaches increased. At the age of 36 years, in October 2013, at my mother’s indication (MANY THANKS TO HER), she is a high-ranking neuropathologist, I underwent the exams and was diagnosed with Arnold Chiari I and Idiopathic Syringomyelia. She found all the information about the treatment methods for these diseases worldwide, after discussions, consultations and the assessment of the information on the Internet, she told me about and insisted on the surgery at the Institut Chiari, Syringomyelia and Scoliosis of Barcelona (ICSEB). After Reading about the treatment methods and surgeries and the patient testimonials, I decided to undergo surgery.

On 17 December 2013 I underwent the Sectioning of the Filum Terminale surgery with the application of the Filum System®, with the diagnoses Arnold Chiari I Syndrome, idiopathic Syringomyelia and Idiopathic Scoliosis. I was surprised by the good reception and the team’s professionalism. I had never encountered such an excellent patient care. I am 100% certain that the surgery was performed on a very high professional level, and that it eliminated the cause of my suffering and stopped its further evolution. A new period of my life has started now, without fearing that the diseases could make me end up in a wheelchair. I am very happy to have met al Doctor Miguel B. Royo Salvador and his team!

I would like to tell everybody with these diseases about Dr. Royo and his team, their competence and excellent work!

Doctor Miguel B. Royo Salvador, I wish you and your colleagues a long life, happiness and prosperity, and that you will carry out your great plans to create an Academy for your method, so that people worldwide will be free of their diseases! A big thanks also to Nina and Doctor Marco Fiallos for their professionalism and good treatment!

I also want to say that I was able to combine the useful with the pleasant! It was my first visit to Spain, in Barcelona, and I was impressed by its originality, beauty and friendliness!

My email: [email protected]

Mobile phone: +7 701 715 08 00

Surgery date: October 2011

Good day.

At the age of six years our daughter started having health problems: some trouble with the left foot, she wasn’t able to walk on it entirely, the heel would always be “hanging” in the air, then the scoliosis appeared, one shoulder was higher than the other, she wasn’t able to walk properly on both feet and stand up straight, also some behavioural problems appeared.

Upon having a MRI of her back in March 2012 she was diagnosed with syringohydromyelia. On the one hand we were happy to have found the cause of the problem, on the other hand, we did not know what to do next. We started to search, see neurosurgeons, during one and a half years we were researching and visiting hospitals for consultations, but, unfortunately, we weren’t convinced, we would have entrusted our little girl to any of these doctors, I think that many moms and dads will be able to understand.

We continued to research and in August 2011 we found the Institut Chiari de Barcelona over the Internet, we send them the images and started to communications.

Yes, the surgery was expensive for us, but our girl’s health is much more valuable than anything else. We got a loan and went to Barcelona. The surgery was carried out on 25 October 2011.

Dr. Royo transmitted serenity and reassurance, the surgery went very well, and on 30 October we were already celebrating my daughter’s 9^th birthday on the Tibidabo mountain.

We did not notice the improvements immediately, but the shoulders gradually levelled, she can walk on her left foot now. The magnetic resonance images from May 2013 showed a favourable evolution. We want to thank the entire staff of the Institut Chiari and CIMA hospital, Nina and all the contact persons and without doubt express our affection gratitude to Dr. Royo! Thank you very much, everyone!

Svetlana, Violetta’s mother, [email protected]

Date of surgery: July 2011

My name is Paolo Buscemi, I am 27 years old and I’m Sicilian. I am writing to tell my story about how I discovered my disease and Dr. Royo’s surgery. It all started in 2011. I started feeling strange sensations towards January: stiff hands, loss of strength and grip (often things would slip out of my hands), neck ache, pain in the arms, deglutition alterations, problems when urinating.  Following the neurologist’s advise, I had a MRI scan, through which I was diagnosed with a wide syringomyelia cavity, from C2 to C5. My neurologist immediately recommended a specialist from Milan. I went for an appointment with him, where he explained in general terms what syringomyelia is. After seeing the MRI report he told me that they were going to have to operate, that there were two kinds of surgery, and not only was it going to be the more complicated one in my case, but he also was not able to say anything certain about the outcome. Additionally, this surgery was going to last 12 hours and he was telling me about a “plasty” that would have to be inserted…I left there completely broken. My mother and my sister were with me that day; after me, a lady who had undergone surgery with this doctor went in for a post-operative check up. We waited outside until the lady came out, as my mother had suggested, asking her for information. When she came out, we asked her how she was and what experience she had had. She was very forthcoming in answering our questions and she told us that they had operated on her with a procedure that lasted 12 hours, that she had recovered gradually (she still wasn’t speaking fluently) and that she had heard that there was a specialised centre for syringomyelia in Barcelona, in Spain. I arrived tired back at home, in low spirits and confused, and I laid down bed to try to relax a little. My sister, who had heard the conversation, started searching the Web and found the centre that the lady had talked about. It was the Institut Chiari de Barcelona. She started reading the website attentively, trying to collect as much information as possible about the disease as well as the types of surgery. When she read that Dr. Royo, the director of the Institute, performed the sectioning of the filum terminale for cases of idiopathic syringomyelia, and that the surgery lasted just half an hour, and it seemed that it was not invasive at all without inserting any “plasties” or anything similar into the body, she cheered up again, and us with her. We read the testimonials of those affected by this rare and degenerative disease, and of those who had put their trust in the Institut Chiari to solve their problem like me. All the testimonials were positive, they talked about surgeries with positive outcomes, about people who on the other hand unfortunately had arrived there after a course of years of duration due to the ignorance that exists in Italy regarding this pathology. I spoke to my neurologist about the discovery of the Chiari centre. At the beginning he was a little suspicious, he wanted to see the website and finally he came round to thinking that everything was normal. I tried to find out whether in Italy they were able to perform the same procedure as Dr. Royo. There were many doctors that pretended to be his pupils. Nothing was true…it was all lies! At the end we decided to book an appointment at the Institut Chiari. Gioia Luè, the contact person for Italy, replied and gave us an appointment for the 11^th of July 2011. I went with my mother and sister. Dr. Royo, after examining me and studying the documentation that I had brought along, detected: Cord Traction Syndrome, idiopathic Syringomyelia from C2 to C5 and mild dorsal scoliosis. We immediately took comfort in this; dealing with idiopathic Syringomyelia meant that I could have the surgery. I had all the pre-operative exams on the same day at the CIMA clinic, and they performed surgery the next morning at eight o’clock. After a month I came back to Spain again for the first post-operative check up and there were more improvements. My spinal cord was free for the first time! Today, two years after surgery, I am very well. I hope that my testimonial can help to light up the hope of people lost in the darkness who do not know which path to take…I would like to thank everybody, especially Gioia, who gave me psychological support and calmed me down, and Dr. Royo, a great man, who has stopped the course of my illness, and in my case I can also confirm that the symptoms have disappeared. What impressed me most about him is his great humanity, his achievement to remain humble despite his extraordinary magnitude. I am at your disposal for any information. This is my number:

0039 (0)925 951719

Paolo Buscemi

Paolo’s video testimonial:

Surgery date: June 2011

It all began in 2008, when I was only 18 years old. I started to have strange pains, vertigo, loss of balance, muscle spasms, weakness of the limbs, and I’m probably not remembering all of it. Without understanding what was happening to me, I quickly approached a doctor. He immediately thought that the cause must be the stress related to the exams, but I was convinced that that wasn’t the case, so he had me do a brain scan, which in the end wasn’t conclusive o anything. Hardly being able to walk (due to those symptoms) I decided to consult various doctors before finding out what I was suffering from

In one year, I saw:

–     My GP numerous times

–     An otolaryngologist (in order to check whether the vertigo could be caused by the inner ear)

–     A podiatrist (they thought that difficulties for walking were caused by my feet)

–     Physiotherapy sessions (for my back, because I felt that also there something wasn’t right)

–     A cardiologist

–     A phlebologist (they thought the problem might be related to the blood circulation)

At sight of none of this resulting in anything (and I have only mentioned the specialists I went to see, but not all the medical tests that I ended up doing), my GP decided to prescribe a MRI of the spinal cord (it was one of the last exams left that I hadn’t done yet). I would like to point out that I was not able to go about my daily life, and apart from the difficulties to get around, I would get dizzy even when I was seated, it was unbearable. Lying down I didn’t feel well either; the only time when I would feel calm was when I was asleep. All other time had really turned into complete hell.

I then had the MRI of the spinal cord, thinking that once again it would be useless. I was surprised and panicked when I read that I had a “syringomyelic cyst in Th8 and Th10”. After looking up on the Internet what this meant, I thought that my life would stop. On different websites there were explanations that the state of health would be deteriorating and that there was a big probability that I would end up in a wheelchair, or would even end up in a vegetating state.

I rushed to see my GP who was unaware of the disease. Well, he had heard of the name but never met a patient with this pathology. He then confirmed that it was a rare and serious disease and that a neurologist would be the most indicated person to answer my questions.

So I went to see a neurologist who told me: “it’s nothing, it’s just a small cavity holding water, nothing more, you’re not suffering from anything”. That seemed strange to me, given my symptoms and everything that I had understood regarding this disease.

Feeling bitter and ill, I started to read Internet forums. They were talking about a surgery that was being performed in France, but that was dangerous and often there were patients that would end up in a worse state.

There was no way that I was going to have this surgery, and then I discovered Doctor Royo’s website and I read all the testimonials a number of times. I got in touch with those who had had the surgery to make sure that it was all true and it seemed phenomenal to me. Without having the funds and still suffering badly, I went to see an important neurosurgeon at the reference centre for this disease, Kremlin Bicetre. He explained that he would not operate in my current state (with the French method), he would do so only if I was in a wheelchair and that Dr. Royo was a “charlatan”. I left there angry, not knowing what to do, given my state was deteriorating day by day, I was hardly able to carry out any chores at all. This professor was the last French doctor I saw in relation to syringomyelia. Having heard only positive things regarding the surgery in Barcelona, I took the decision to have surgery there. Actually, I would like to thank Estelle and all the people who took their time to answer my questions.

I then contacted the Institut by email, and they asked me to come for an appointment with my exams in order to see whether my case was operable or not. I struggled to be able to travel over there, using all the strength that I had left. This was in February 2010. This Institut and the filum terminale surgery were my only chance. I put all my hopes into it.

Dr. Royo then told me the good news that my case was operable, hoping that not all the cells would be dead. So I started to save up from my small student wage. I kept on talking with operated patients, I spent my days reading the testimonials on Dr. Royo’s website preferring to so forget the French patients, whom I saw talking about their daily deterioration in the forums. The following months I had a bit of a break regarding the symptoms, but with days were I could hardly move around. On other days I can say that it didn’t go that badly, it was very random, so nevertheless action was required quickly.

With my own finances and the help of my family, I was able to have surgery on 27 June 2011, one year and four months ago. The surgery went very well, the clinic is very modern, much more than French hospitals and clinics, the team was very professional and warm, which is something that is very important for the patients.  Unlike the majority of other patients I didn’t feel anything spectacular right after the surgery. The symptoms were well present. So I had to gather patience, speak to people who were in the same situation and one month later, after the control examination, they informed me that I had recovered reflexes and that I had recovered 10 kilos of strength in the hands (I had 18kg previous to the surgery and one month after I had 28kg, which is something phenomenal). Regarding the vertigos things were random, I raised many questions and had doubts for quite some time, but luckily everybody was around to remind me of the fact that my spinal cord had been compressed for a long time (with three years of symptoms) and that it would require time for everything to readjust. Today I can confirm this; I have hardly any symptoms now. I have recovered 90% of my abilities and I can lead a completely normal life, something that I thought to be impossible.  I am thrilled with the surgery and would like to thank the entire team for their kindness and professionalism and all the people who have been by my side during this difficult trial.

I leave my contact details in case you have questions:

[email protected]

Surgery date: July 2012

About ten years ago, I started to get some aches in my arms. The doctors said that it was tendonitis, a wrong movement, …but the pain was always the same and I was gradually losing strength.

Last year I had an electromyogram done, because I virtually couldn´t hold a pen in my hand, and I was told that I had the Carpal tunnel syndrome. That surgery didn´t bring about any improvement for me, so they told me that it probably was the pronator syndrome.

We got in contact with Dr. Royo because of this, so that he could tell us what it could be approximately, but the day I went to the consultation he performed a physical examination, and due to the results he got he asked me to get more tests done, electromyograms, magnetic resonance,…

Once I had all the test results, I was diagnosed with the Cord-traction syndrome and idiopathic syringomyelia. And that´s where all my symptoms came from.

On 3 July 2012 I had the sectioning of the filum terminale surgery, and just eight hours after this procedure I had already regained one kilogram of strength in each arm.

Ten days afterwards I went back to Dr. Royo´s practice and I had already doubled the strength in each arm. During this time I have not had any pains at all in the arms, they don´t go numb or anything like that, it´s as if I´d never had any pain.

Tel. 649191231

Email: [email protected]

Go to Anna’s video testimonial

Surgery date: June 2012

Hello, my name is Joaquina, I´m 54 years old and I am from Valladolid. My problems started in 2008, when I broke my shoulder in a work accident. At the insurance they already found the syringomyelia through a resonance, but they didn´t give any importance to it. From when I had the surgery, everything started to go really badly. I started out with a back ache (when I had never had any problems), I wasn´t able to move, I couldn´t sit, walk… The pain was unbearable, I went to the emergency room, but the only thing they would do was to give me pain medication and tell me that this was coming from the shoulder, all this repeatedly. I got toxic hepatitis from all the morphine patches and other medication and I was admitted to hospital because I was about to go into a hepatic coma. I was slowly deteriorating, I wasn´t able to walk, I walked with the trunk inclined forwards and dragging my legs without being able to bend my knees, I had a lot of back ache, I wasn´t able to breathe, and I starting to have trouble to speak and I´d choke frequently. Every time I went to see a doctor they told me the same thing, that the shoulder was the problem, they would send me from one doctor to another because they didn´t know what was happening with me, I started out with a traumatologist, the pain management clinic, neurosurgeon, internal medicine…. None of them knew what was the matter with me, time went by and I felt worse every day, I couldn´t go out onto the street anymore and would spend hours and hours sleeping. Besides, every time I went to see a doctor I´d leave there feeling worse, because nobody would listen and even the treatment I received was humiliating, it seemed as if I was crazy. I went to the emergency services once again and they admitted me to internal medicine, they found disc herniations  and syringomyelia in the thoracic spine, they told me to have surgery only for the disc herniations, but luckily I said no, because they did not take the syringomyelia into account, only the disc herniations and who knows how that would have turned out, so I discharged voluntarily from hospital. As the traumatologist was tired of seeing me without being able to offer any solution and being aware of my bad shape, he sent me to see the head of neurosurgery and he immediately he told me that I had a mechanic myelopathy with syringomyelia and that there was no treatment for me available in Valladolid. AFTER FOUR YEARS!!!! They referred me to Burgos and there they told me that there was no treatment for me either, after insisting for a long time I achieved that they referred me to the Vall d´Hebron Hospital in Barcelona. My state was getting worse every time, light, noise and people bothered me….I wouldn´t even let anyone hug me  because I was hurting all over. Time went by and nobody called from the hospital, so I got hold of a telephone number of a doctor who works there and also has a private practice, I called and she told me that according to my symptoms they wouldn´t be able to do anything for me there and she very kindly gave me the number of the Institut Chiari, telling me that there they would be able to help. I called immediately. Barbara answered and she explained very kindly that I did not have to go there, that I should just send all the tests I had. That same morning I sent all the resonance images and tests and four days later she called to tell me to come for a consultation and that they would be able to help me. I went the following week and I had surgery the next day, on 5 June 2012. After the surgery I felt a great relieve immediately, I set myself straight and was able to walk bending my knees and walked normally, without dragging my legs, the aches have been disappearing slowly. I went for a check up one week ago and they confirmed that I was much better and that I could start rehabilitation, I´m starting next week. I´m leading a regular life, I go out into the streets and don´t get tired, before I wouldn´t even manage four steps.

I´m very pleased and grateful to Dr. Royo and his team, they brought life back to me and have given me a second chance, if it wasn´t for them I would be a vegetating in bed. It is unbelievable because seem to be another person.

THANK YOU.

TEL: +34 983401373 E-mail: [email protected]

Querido amigo te escribo…

Dear friend, I write to you… Dear Dr. Miguel Royo Salvador: I would like to allow myself to call you simply Miguel. I am writing this short letter to you to express my gratitude and recognition, being one of the few lucky people in the world who have been able to meet you. I would like to speak not so much of your genius talent in the field of neuro-craneo-vertebral neurosurgery (it is not necessary, I would not even know how the use the adequate medical terms since I myself work in a completely different area to yours), but of your human gifts and qualities. I was (luckily) able to participate in an event in Trieste organized by the “Associazione Italiana Sindrome Arnold Chiari, Siringomielia, Scoliosi Filum Tomizzati” on Satuday 12/11/11 in the “Circolo Sottufficiali”, because me and my daughter were accompanying my wife, Misses Rita from Rovigo, who you had performed the Sectioning of the Filum Terminale surgery on in May this year. As you will remember, my wife suffers from a severe kind of adult scoliosis, and was suffering, a few years a ago, from a constant strong pain in the right arm and of a serious respiratory insufficiency with a lack of oxygenation of the blood. Now well, dear Miguel, after your surgery, the strong pain in the arm has almost disappeared, whilst the respiratory problem has improved notably, and, after a postoperative with many ups and downs, the values of the oxygenation of the blood (arterial blood gas) have currently returned to almost complete normality. But as I said, in this letter I would like to underline, apart from your huge talent as a global neurologist and neurosurgeon, your human gifts and qualities, those of a normal person within reach of others. After the meal organised at the end of the event, I had said good bye to my friends and acquaintances I headed to the bar of the “Circolo” to have a coffee, when you arrived, and drinking the coffee together, as old friends do, we kept on talking a little about my wife Rita´s case. To a certain question of mine you answered that my wife had also been lucky. Well, dear friend Miguel, you were mistaken: luck is like the faith in God; you have to look for it. We did look for it (through the information organs, the Internet, etc.) and we found you. Thank you, dear friend Miguel. I would like to consider this testimonial as a small tribute to your work and that of your extraordinary medical and collaborators team, and hope that all the Arnold Chiari and Syringomyelia patients that don´t know you yet will read this through the media, and especially those neurosurgeons from the “Civile” hospital in Rovigo that we asked for help before contacting with you, who a priori ruled out that the pain in the arm that my wife Rita was suffering from could have been caused by the Syringomyelia, and those specialist physicians in pneumology and pain management who spoke amazed of a miracle when considering the obtained results. I finish, dear friend Miguel, thanking you once more, you and your team of doctors and collaborators, and I hope that we will have another coffee together in May 2012, when I will accompany my wife to Barcelona, to the Institute for her post-operative control visit one year in. Rovigo 14/11/2011 Gianni Lanzoni

Date of the surgery: January 2010.

My health problems began when I was 7 years old, in November 2003. After a cesarean I lost 17 kilograms in just one day. At first, I was happy to leave the hospital looking thinner but when I started to walk, I noticed my body balancing towards the right side. I thought this was due to a side effect from the anesthesia, so I didn´t thing it was important. I hoped it would be a temporary thing and that I would recover myself from it little by little. I did not have time to pay attention to such a “triviality”. I started to feel very tired, but I thought this happened to all mothers with small kids. This tiredness was not natural. When I rested laying down, I didn´t have the impression of being on a mattress but to have a heavy mattress being on top of me, a sensation of heaviness and being crushed. Time went by. After some time I started to have colored vibrations in the eyes that moved incessantly. This repeated itself almost every day, sometimes a various times a day. These moments lasted for 15-17 minutes (I wrote it down). During these moments I almost could not see, so I just sat down and waited until it stopped. The ophthalmologist did not see anything wrong. A little a more than a year went by and I felt like pins and needles in the fourth toe just like if it fell asleep. I started to rub it, massage it but this sensation did not go away. With time this spread to the whole leg surface- from the toe to the knee and upward. The sensitivity was okay but as if it was through a dense fabric. The toe´s skin literally started to get dry and fall off. No cream helped at all. My legs got really thin and became a grayish color like and they were always cold. Later on started the strong and very painful cramps. Later on I felt burning in my bones. Strong vertigo appeared, not very ordinary ones, since they were followed with strange swaying. When I walked, I could not walk in general since I could not coordinate my right leg, so at home I moved from one place to the other by leaning on the walls. My legs were heavy as pillars.

The visit with the neurologist did not give anything. It is quite unpleasant to remember those moments. The doctor listened to me, checked my flexes, touching my nose with my finger, she pinched me, she scratched me with different sharp objects, she asked my age, my sons age and gave me “good advice”: “not to take everything so seriously, pay less attention and to not bother her for nothing”. I came out of there in a state of shock. In the aisle I started crying. After some time went by, I went with another more experienced neurologist, as she seemed then. She listened to all my problems, she did not check anything, only wrote down “EM” in my history. She prescribed me Milgamma and that´s it. Time was going by. Then, a terrible weakness added itself to my list of problems, which caused me nausea, almost every morning. I was getting worse every time. There was only one thing left to do- to take control of my proper health. I went to the Diagnosis Center of Samara, here in my city. With all evidence and all my exams, the specialists did not see anything. According to them, everything was in order, since the exam results were perfect. When I asked them to give me an MRI request, they told me directly “why do you consider yourself more intelligent than us the doctors?” “We know best what type of exams you need to have.” And every one of these exams was quite expensive and had to be paid. Afterwards I noticed I had really bad vision in my right eye. With both of them I could see quite all right (permutability) and that is why I noticed it right away. When I laid down on my right side, in my right ear I noticed a constant buzzing, so strong that it seemed as if I put my ear against a transformer box. That is why I could not sleep well and thought it was very uncomfortable to be laying down. I had back pain, neck pain, in my arms, legs and sometimes had a hard time in breathing. In the kitchen I could only wash 2 or 3 dishes because I lost strength and had trouble lifting up my arms and shoulders. I started to fall down quite often. My legs started to fail and I fell on the flour. The hardest thing was to answer to my little son´s questions: “mom, why did you fall on the flour?” So I sat him on the floor next to me, laughed and said to him that mom was very clumsy like a cow and that is why I fell down. The words “clumsy” and “cow” sounded fun to him, so he laughed and carried on playing. So I got up somehow, went to the couch and fell on it and fell asleep. It got harder and harder to hide my condition from him. Then it only went to worse. My body started release a strange smell; it reminded me of meat turning bad. I lost so much hair that I was afraid to comb myself. Afterwards, I had trouble swallowing, I stopped sitting down at the table with my family because I often chocked. Eating was becoming a real torture. After chewing the food and swallowing it, I did not know what would happen next. Reaching my throat, the food stopped moving and I had to wait until the muscle in my throat worked or if not, I had to get in time to start coughing to get the food out, or choked and spent a while coughing to relief my respiratory system. In all this time my right kidney descended about 8 cm, so I always felt how it pulled and sometimes started convulsing. During that time, my lumbar region, my back and shoulders were in constant pain. My whole body was rigid. With a bit of effort I could lift up my right foot only 3 or 4 cm from the floor and no longer than a few seconds. When I had to go up some stairs, I lifted my right leg with my hand by the pants. When I was sitting on the sofa, I could not feel my leg position, if they were bent, together or straight unless I looked at them.

In six and a half years, nonce of the doctors of which I visited took my case seriously. In summer of 2009, I went to the Kuvatova clinic. On the following day they let me have an MRI done by my personal request without any previous guideline. They took images of my lumbar region, since all my problems seemed to come from my lower body. Then, the middle part of my body and afterwards the higher vertebral column region. That is when they announced my diagnosis: Syringomyelia. They told me there wasn´t any treatment and that my quality of life would get worse. So, ” hold on and don´t loose encouragement”. My husband spent half a year “living” on Internet, always searching, looking for any information until finally found it. At first we could not believe it but precisely could not believe what we had found. The “Chiari” clinic in Barcelona. We red all the references and operated patient´s letters. We were already completely sure that this intervention would be the only way out to this horrible disease. I went through surgery on January 26th of 2010. It went very well, since right after the anesthesia I woke up feeling very light. I felt my body was completely healthy, new. Most of the symptoms disappeared right away. The energy impulse I had was of such magnitude and indescribable strength that I simply could not believe it. I was full of energy. My vision in my right eye restored itself in less than a week. The buzzing in my ear disappeared right after the surgery. I did not have vertigo anymore. I did not have any more colored vibrations. I could coordinate my walking right away after getting up. I could lift up my feet in a way that only a healthy person could. And the most important- a lot of strength appeared in my legs, despite the atrophied muscles. My skin color immediately turned to be normal, my hair stopped falling (I noticed it the day of the clinic discharge). My back, lumbar region and the rest of it did not hurt anymore. So, it was difficult for myself to believe in these changes. Before the intervention I would be walking having to rest every 3-4 minutes, but immediately after the surgery, I spent ten and a half hours walking with my husband all over Barcelona having stopped only twice in a cafeteria to eat something.

Guess, which of both of us ate standing up and did not choke once? I wrote my story now, after a year, because even now it has been very hard for me to remember what was happening to me since the year 2003 until 2009. I want to address myself to all the people who have this terrible diagnosic. Do not consent different questionable procedures, which can lead out to irreversible consequences. Do everything you can to see Dr. Royo. WITH A LOTS OF LOVE, I WANT TO THANK THE DOCTORS WHO HAVE GIVEN ME BACK GOOD HEALTH AND A COMPLETE LIFE.

My phone number is: (+7846)3345826 E-mail: [email protected] Skype: rusianen

Date of intervention: May 2010

Buenos días a todo el mundo,

Me llamo Rosanna Biagiotti, tengo 35 años y vivo en Umbría, precisamente en la provincia de Perusa. Quería contar brevemente mi historia, esperando de esta forma poder ser de ayuda a todos aquellos que, como yo, han tenido la mala suerte de tener una enfermedad rara y que no han encontrado en su país las debidas respuestas.

Todo empezó en Agosto 2009, cuando iniciaron los primeros raros síntomas de cansancio y debilidad de la musculatura del cuello, con movimientos involuntarios de rotación de la cabeza hacia la izquierda. Desde aquí empezaron las primeras búsquedas, al inicio mediante simples pruebas de rutina, como RX craneal y de columna cervical por petición del médico de cabecera, pero de estas no resultó ninguna anomalía. Pasó de esta manera otro período de tiempo, en el que me visitó un neurólogo de la zona, el que en un primer momento me dijo que estaba estresada y que debería probar a conducir una vida más tranquila, tal vez con la ayuda de un medicamento relajante; desesperada por la respuesta intenté a tomar otros caminos, y al mismo tiempo contacté a otro neurólogo, el que, tras un inicial escepticismo, decidió hacerme una resonancia magnética.

Mientras ya habían pasado tres meses, era inicio Noviembre y mi malestar había empeorado mucho, tanto que ya no podía ni realizar las simples actividades cotidianas, en la práctica ya no lograba coordinar bien los movimientos. Desesperada esperé con ansiedad la cita de la RMN fijada para el 10/11/2009. Recogida la respuesta después de unos días emergía lo que sigue: Discopatía degenerativa en C5-C6 con espondilosis y además se señala ectasia del canal ependimal en la juntura cervico-dorsal y en el tracto dorsal proximal de unos mm., se aconseja repetir pronto otra RMN. Repetí la prueba tras unos días el 09/12/2009 y me reconfirmaron el diagnóstico anterior. Después de unas semanas fui a visita en la consulta privada de un conocido neurocirujano que diagnosticó lo siguiente: cavidad siringomielica en C7-D1 al parecer aumentada desde la primera RMN y torticolis espasmódico o mejor distonía cervical, me aconsejaba entonces repetir otra RMn para excluir conflictos neurovasculares. Pasaron los días y mis síntomas empeoraron notablemente, empecé a tener a ratos parestesias en los dedos de las manos, tenía problemas de temperatura corpórea y problemas al tragar, así que mi neuróloga decidió ponerme en contacto con un neurólogo del hospital de Perusa para hacer un tratamiento con Toxina Botulínica para aliviar los espasmos de mi distonía.

Fui entonces a visita y ya estábamos a finales de Enero y el neurólogo decidió ingresarme por más controles. Durante la estancia me sometieron a varias pruebas y a visitas, para mi realizadas con mucha superficialidad y con ningún sentido de humanidad. Repetí la RMN y con el alta me dejaron con el siguiente diagnóstico: Siringomielia cervico-dorsal Distonía focal cervical Anemia Migrañas frecuentes Y el día del alta me trataron con toxina botulínica por la distonía cervical y me dijeron que habría tenido beneficios después de unos días, mientras que por la siringomielia no tenía que preocuparme…

Pasaron las semanas y yo no encontré ningún tipo de beneficio por mi torticolis, al contrario cada día podía hacer menos cosas, pasaron tres meses y decidí rellamar al profesor XXX de Perusa para ver si podía anticipar el tratamiento con la TB, que a través CUP iba a pasarse de los cuatro meses, pero él, de forma muy maleducada y sin preocuparse de mi estado de salud, me dijo que era imposible y que tenía que esperar hasta el 16/6/2010, algo que para mí era imposible. Al mismo tiempo, no segura del protocolo para seguir respeto a la siringomielia, fui a ver a un notable luminar de Siena, que, después de una rápida ojeada al cd de la RMN, me dijo que podía estar tranquila porque tal vez la cavidad siringomielica no habría avanzado nunca, y después de diez minutos de consulta, salí sin tener tampoco un informe por escrito, pero con la tristeza de haber encontrado también ahí la misma superficialidad de Perusa.

Decepcionada por todo esto, yo seguía sin estar tranquila y me preocupaba por la gravedad de la siringomielia, porque es una patología degenerativa devastadora y necesita de una atención muy especializada, la que hasta entonces yo no había obtenido. Todo el mundo me dejaba al caso, a la incertidumbre, yo en cambio quería certitudes porque no había aceptado este tipo de cambio repentino en mi manera de vivir , me avergonzaba de cómo había llegado a ser, me sentía una inútil, ya no podía ni jugar con mi hija, los pequeños gestos eran como enormes montañas para escalar…no…alguien tenía que ayudarme… por desesperación y por ganas de salir fuera de esta situación quería a toda cuesta una respuesta de verdad, o sea si mi vida debía de ser realmente tan desastrosa o si podía haber una solución. Hasta entonces había viajado en la oscuridad sin encontrar una salida, pero un día, navegando en Internet, buscando una clínica especializada en mi patología, encontré el Instituto Chiari Siringomielia y Escoliosis del dott. Royo de Barcelona. No me parecía de verdad… de verdad existía una solución!!!! No me lo podía creer… decidí entonces fijar una cita para una visita y bajé en Barcelona el 19/05/2010, estaba muy agitada pero en el mismo tiempo contenta, contenta de saber que por fin ahí habría encontrado a un médico preparado, que por fin habría contestado a mis preguntas. Tras una visita superatenta y después de visionar el cd de la RMN, el diagnóstico se complicó: Distonía cervical Siringomielia idiopática Síndrome de tracción medular De hecho me explicó muy claramente que mi caso es muy complicado y, para evitar que la situación degenerase a más, debía someterme enseguida a intervención de Sección de filum terminale por detener la patología, en cuanto nadie puede saber en cuanto tiempo se desarrolla la enfermedad. Decidí entonces fijar la fecha de la intervención para el 01/06/10. Fui operada por el dr. Royo en la Clínica CIMA.

Yo estaba verdaderamente muy tranquila, la intervención en anestesia general duró poco más de una hora y al despertar me sentí diferente, más libre de la pesantez que me llevaba encima desde hace años, y a las ocho horas después de la intervención ya había recuperado diversas cosas: las parestesias en las manos habían desaparecido, había recuperado la temperatura corporal, la úvula estaba de nuevo centrada y había recuperado el Babinski. Quedaba entonces el problema de la distonía cervical, pero, con el paso del tiempo, empecé a notar pequeñas mejorías, hasta que después de un mes aproximadamente recuperé totalmente la posición correcta de la cabeza, los espasmos desaparecieron y volví una persona normal como antes. Mi vida ha vuelto a empezar gracias a la investigación del dr. Royo, por esto no dejaré nunca de darle las gracias, es una persona especial bajo todos los puntos de vista. Agradezco además a todo su equipo y a Dª. Gioia Luè la grande disponibilidad y profesionalidad. Gracias a todos por haber hecho sonreír de nuevo a mi y a mi familia, y por haberme dado de nuevo la posibilidad de jugar y correr junto con mi hija, que en esta temporada tan oscura me ha hecho encontrar la fuerza de no rendirme y encontraros a vosotros como solución a todos mis problemas. En fin, quisiera dirigirme a las personas afectas de mi misma patología: no esperéis que la enfermedad haga sus daños irreversibles, al contrario, intentad pararla a tiempo y dirigiros al dr. Royo. Quedo a disposición por cualquiera información, adiós a todos y perdonadme si me he alargado.

E-mail : [email protected] Teléfono: (+39) 3534043904

Date of intervention: April 2009

My name is Cristina Pascale, I am 30 years old, I live in Bucharest, Romania and I am Dr. Royo´s patient who diagnosed me with “Mielopathy of Traction. Dorsal and Lumbar Hydrosyringomyelia”.

My symptoms appeared in April 2008 and were present like pain in the left foot that stopped only for a short while when I was under the effect of the anti-inflammatory pills.

Between June 2008 and March 2009 the situation became worse. I had a lot of pain in both of my legs and a lot of walking difficulties. The pain wasn´t constant – there were days when I was moving very slowly and days when my walking was almost normal. I had also pain in the back waist area.

Later on I have found on the INTERNET more information about my “problem”, I contacted the INSTITUTE , I have send my analyses and Dr. Royo was able to confirm a clear “Dorsal and Lumbar Hydrosyringomyelia” in my MRI scans, done in the September 2008. In March 2009 I succeeded to solve all my other problems and go to Barcelona for control and intervention. After Dr. Royo´s examination I decided that I wanted the intervention because this was my only chance. The following day I went to surgery and after a very short time my senses begun to come back to me. After a month, I went back to Dr. Royo for a check up and up until now I have been noticing improvements. Progressively all my pain disappear and now I feel like a normal person. I feel that I am recuperated 100%. I want to congratulate and thank Dr. Royo and his team and to mention that he offered me full support and encouraged me by standing by me. As an advice: if you are diagnosed with “Hydrosyringomyelia” go to Dr. Royo because his intervention is the only real solution. Cristina Pascale If anybody needs more information please contact me at 0040723322327 or send me an e-mai on [email protected]

Date of intervention: January 2008

Rose-lys, 53 year old, French, with Syringomyelia since 7 years old from C5 to D1. Strong worsening after 3 months.

Symptoms: migraines, loss of muscular mass, discoordination in hands, difficulty in swallowing, in eating, dizziness, lack of balance, lack of heat and cold sensitivity. Strong back pain, limbs, jaw, etc… My only hope was Dr. Royo.

The intervention took place on the 22nd of January in 2008, after the pre-surgery tests practiced the day before. The intervention is minimally invasive; it takes 40 minutes with one and a half day stay at the clinic. Nowadays, meaning a month after the intervention, I have recovered about 80 % of my capacities. Dr. Royo has saved my life. Without him I would have been in a wheelchair or in a bed hospital. The filum terminale technique has no risks compared to another traditional method. I am very grateful to Dr. Royo Salvador, his assistant and all the team that do an extraordinary job. I got the social security to cover all the medical expenses. I am at your disposition to answer all your questions, by phone at (+33) 04 67 36 29 12 or by e-mail: [email protected] Rose-lys’s video testimonial: https://www.youtube.com/watch?feature=player_embedded&v=KyVxNyqlebI

Date of intervention: September 2007

Reinaldo Yegres López C.I. 5.083.465 and Carmen Ruiz de Yegres C.I. 5.081.971, from Venezuela, parents of 11-year-old Reinaldo Andrés Yegres Ruiz, want to tell about what we have gone through when we discovered the illness my son had.

It all started in the month of July of 2006 from an umbilical hernia operation. The insurance claimed as a requirement for the guarantee letter, an abdominal scan. In this same scan they detected his renal pelvis and left kidney bigger than the normal size. The specialists saw it and also found his bladder enlarged its size (neurogenous); united with a gastrointestinal problem (constipation) this boy was suffering since a long time ago.

A child nephrologist had the idea of sending the boy to have an MRI done of the whole column, from which they diagnosed a dorsal Syringomyelia (in the month of September 2006).

In this moment we didn´t know anything about this illness. The child Urologist that treated the boy sent him to repeat the test to verify the diagnosis, confirming the same. After having some knowledge about this illness and finding out that it did not have a cure and as it progresses the boy´s health was going to deteriorate. For us it was a terrible impact, a boy who looked so healthy had suffered such illness. Here in Venezuela various specialists saw him. One of them said nothing could be done, another one said the best option was to introduce a Catheter in the spinal cord and the other one thought of operating him in the head, although he told us very clearly that he did not give us any guarantee. We felt powerless without knowing what to do, asking god to illuminate us; he listened to us, the boy´s uncle sent us the information from internet showing he had found out about an institute in Barcelona (Spain), where there was (Dr. Miguel Royo) with his team that had a few years of studying about this illness. We got in contact with the Institute coordinator, Mrs. Isabel Montesinos and sent her all the tests she asked for. Dr. Royo and his team did the evaluation and confirmed the diagnosis of Syringomyelia and Idiopathic Scoliosis and they informed us that the boy was a candidate for the minimal invasive intervention. Apart from their opinion, we also consulted in the EEUU but the answer was not satisfactory. We started to think of the possibility of taking him to Barcelona, we did not have sufficient assets but we overcame the difficulties and a year later, in September 2007 we took him to Dr. Royo. The doctor examined him and we noticed that the boy had less strength in the right hand and something that impressed us very much; was that he still conserved the Babinski reflex. Normally this reflex exists in very young children but not in an 11-year-old boy. This was due to the illness he suffered in the spinal cord of the vertebral column. At the next day on 13/09/07, Dr. Royo and his team operated the boy and at the next day when he went to give him the discharge from the clinic, he examined the Babinski reflex again and it had disappeared. 15 days after the operation, Reinaldo has recovered his strength in his right hand and has been correcting the constipation problem. We thank god and will be eternally grateful to Dr. Miguel Royo that with his perseverance in the study of this illness, has discovered the cause and how to avoid its progression. This doctor has given the opportunity to our child to keep growing as a healthy boy and hopefully other people who suffer this same illness have the opportunity to know that there is a solution. This is our testimonial for the world. E-mail: [email protected]

Date of intervention: March 2007

In January 2007, at the hospital San Raffaele of Milan, a person in charge of the pain centre, Dr, Marchettini diagnosed me Syringomyelia.

This is a rare pathology, is an affection of the central nervous system, characterized by the formation of a longitudinal cavity in the spinal cord. On the same one, different etiopatogen have been proposed. The clinic is extremely variable and often it does not correspond with the Magnetic Resonance, that advises to demonstrate frequent malformations (before all, the Arnold Chiari I, treated carrying out a occipital-cervical decompression). As the study of the RM relative to my clinical Picture excludes the presence of anomalies that have to be removed surgically, the only indication is the use of a Antiepileptico drug (Pregabalina) with warning that the symptoms of Syringomyelia tends to worsen with high risk of minusvalia.

Scared before the perspective of life, I began to search in Internet, to be able to contact with other Italian centres that took care of this pathology.

I tried to extend the work that I was doing and from this way the connection to the web of Institute Neurologic of Barcelona caught my curiosity and of my medical Dr. Lumini because it seemed to give my case hope. After a neurological evaluation attempt Dr. Royo in addition, confirmed the Italian version proposed a newness. The way to stop the disease is by means of the surgical Section of the Filum Terminal (described at www.instiutuneurologicbcn.com). Given the worsening of the symptomology and specially to stop the evolution, I chose to undergo the intervention. After hours, a good clinical evolution was observed: sensation of liberation in all the column and recovery of the tact to the cold and heat in the right half of the body. In April 2007, a month alter the discharge, the postoperative control visit emphasized the presence of force in the right hand and regular reflection of both feet. It also verified the disappearance of the suffering of the medular. Thanks to Dr. Marchettini who gave me the correct diagnosis of Syndrome Syringomyelia and who listened to my anamnesis and furthermore the outstanding anomalies during the neurological tests. Form more than 10 years I noticed rigidity in the neck and with time pain Developer in all the right superior extremity (shoulders, scupula, thorax, hemithorax, arm, forearm, hand). In 2000, with the diagnosis of cervical hernia C6-C7, they had practised a therapy called Onik on me. In 2003, with a diagnosis of the syndrome by subacromial of the right shoulder, borsectomia a subacromial treatment was carried out on me. The pre-operating conservative methods as the constant postoperative rehabilitation did not give benefits in neither cases. The specialists confirmed the success of the operations, attributing to the last of my symptoms to a cericodorsobraquialgia, which had verticalisation of the cervical physiological lordosis, in a attitude escoliotica dorsal right and rare muscular tone. Like indicate, I insisted with postural and respiratory gymnastics, the vertebrales tractions, the massages and taking cycles of antiflammitory drugs. The absence of the positive answer to my reductive protocol and a complete results of the electrophysiologists , indicative information of a diffuse motor neurogene suffering in the predominant right superior extremity in the fields of C7-C8- T1, led to direct me to the pain Centre at the Hospital San Raffaele of Milan. Aquí el descubrimiento del Síndrome Siringomielico y al Institut At Institute Neurologic Barcelona was the discovery of Syringomyelia Syndrome and the possibility of stopping the disease thanks to Dr Royo and to his surgical technique. Now the verification of decisive improvements, with the hope that within time the recovery becomes complete. My contact details: (+39) 03 63 34 49 41

Date of intervention: November 2006

My name is Clara Palaun Verdú. I live in San Vicente (Alicante). I am 43 years old. My first back pains appeared during my first pregnancy 14 years ago and I felt stings in the dorsal area. The first years it was an annoying pain that permitted me living a relatively normal life but with time, the pain went intensifying and limiting more my every day activity.

After consulting various traumatologists, they diagnosed me in 2003 a Cervical Syringomyelic cavity in C4-C6 and Hydromyelia in the top dorsal section. The crisis I suffered I would describe them as an intense pain in the dorsal and cervical area, followed by Paresthesias, my right arm felt numb, which prevented me moving my arm normally. My everyday activity was very limited to the point that I stopped doing the majority of the house work like washing the dishes, sweep the floor, clean, it was even difficult for me to open and close drawers, hang the clothes up in the closet, hold the hairdryer with my right…

During months I tried to follow the medical treatment that I was indicated to relieve the pain, even knowing that the Syringomyelic cysts kept pressuring my spinal cord and that my only possibility, according to neurologist from the social security was to keep on taking this medication while I tolerated the pain or up until I had to have the cysts extracted with surgery. An operation that did not offer any guarantee in getting better; on the contrary it could aggravate the situation. Under this expectative and seeing that my crisis were every time more continued and intense I contacted with Jesús Sánchez, a patient who had been operated by Dr. Royo with a new technique, not aggressive at all and with good results. I contacted immediately with the “Institute Neurológico of Barcelona” and after the first visit, I decided to go through the section of the filum terminale surgery with Dr. Royo on November 28th, 2006. It has been already two months since they operated me and I have noticed quite improvement. I have only had a few crisis and less intense than before the operation. I can now do some home tasks, my arm doesn´t feel numb anymore and I feel more strength in my right arm. I have started to do some exercise and I feel better every day, so I encourage those people who suffer from Syringomyelia or are in a similar situation, to get in contact with Dr. Royo and appreciate the possibility of having done the section of the filum terminale. It is a simple operation that lacks risks and can bring a lot of benefits. Phone number: (+34) 965 669 813 E-mail address: [email protected]

Date of intervention: April 2006

My name is Jesus, I was diagnosed with Syringomyelia when I was 20 years old, now I am 42. However when I was 14 I already had compensated Scoliosis and was told it could be corrected with exercises and a hard mattress. It was like that.

Until I was 20 years old I had a normal life but one day while I was shaving my right hand did not respond, I had no strength and did not control it well. I went to the emergency room and when I saw a neurologist he asked me if I always walked like that, as he said I had a spastic walk. They did a lot of tests on me, until they told me I had a cavity in the spinal cord and that it was a progressive disease. Little by little I was getting worse, I noticed instability and I stumbled a lot with little strength and little sensitivity in the right part of my body. They operated me in 1985 in the Ramón y Cajal Hospital in Madrid through the traditional way, which was breaking the cervical vertebrates, with a horrible post surgery. When I recovered myself I had to use a crutch to be able to walk. A couple of years later they operated me again the same way, because it had reproduced again, this time I came out in a wheel chair. In 2006 and looking through the Internet I found the page of the Institute Neurologic of Barcelona. I got in contact with Dr. Royo and on the 25th of May he operated on me with the technique of the filum terminale very little invasive but effective seeing that I had respiratory problems that prevented me from breathing right and after the surgery they disappeared. If it had been possible to have this simple surgery when they had diagnosed me the Syringomyelia, I would not be sitting on this wheel chair for sure. Which is why I am willing to spread out this technique to have it used as a first intervention since it is so effective and little aggressive. I congratulate and thank Dr. Royo for his work and I encourage the people who suffer from Syringomyelia that they please get in contact with the Institute Neurologic of Barcelona. If you want to contact me, my e-mail address is: [email protected]

Date of intervention: April 2004

From here, I desire to thank Doctor Royo for the intervention that I had on the 20th of April 2004, of which I am very satisfied with the result- When I entered with 72 years I couldn´t hola a single object with my right hand due to the lack of sensitivity, and as of today and alter the intervention, with 74 years, I have recovered a 80% of mobility and sensitivity. I animate to all the people who are indecisive to decide to visit Doctor Royo, who like I, do not repent yourself.

Generoso Rodriguez Ramallall E-mail: [email protected]

Informative Note from INB

The patient Generoso Rodríguez Ramallall was visited in a service of Neurosurgery at the General Hospital of the Social Security Barcelona, with a special interest in Syringomyelia, before cervicalgias radiated by the right superior extremity with sensative alterations in the hand in form of hypothesia to the tact, temperature and deep sensitivity. Determining a hand that did not recognise objects, did not notice the heat and with less tact of the normal one. They diagnosed Syringomyelia and impresion basilar. At the hospital, they propsed him to suppress the odontoides apophysis surgically. This apophysis belongs to the second cervical vertebra that sustains and allows the turn of the head. Followed by th colocation of a halo of the craneal traction to maintain the head.Spent a year with a craneal halo, they fixed the first two cervical vertebras by means of a surgical posterior fixation. The patient remembered that 18 years ago he had partial paraylisis caused by right HEMICUERPO, and he recovered the day after, after the extraction of the cervical hernia discal performed by Dr Royo. He went to the practise , where they informed him in detail of his disease and of a new solution with the surgical section of the Filum Terminal. Five hours later after the intervention which lasted 30 minutes , the patient made a spontaneous demonstration of the recovery of the lost ability in his right hand,in the corridor at the hospital,he was extracting from his pockets objects that he identified without seeing them. A year later we had an interview performed by Sr. Generoso Gonzalez and his wife together with Dr. Royo through the radio stations ´ Onda Cero´ in Barcelona. Mr Rodríguez Ramallall´s wife asked: Why is this intervention not done by the Social Security ? That was the reason why they vetoed Dr Royo, having known that there were 2 interviews already programmed.

Date of intervention: June 1994

Everything began in one of the last visits at the Pediatrician when I was 13 years old (now I am 32) that noticed a certain deviation in the spine.

It was then when I had an x-ray and I had pronounced scoliosis. Like all those that have scoliosis, I began rehabilitaion, doing exercises just about every day to rectify the curve, including putting me in a type of cage that had iron bars as support and to put pressure on the turned aside part of the cloumn. The good thing is that at 6 months from when I began rehabilitation, I obtained great improvement. What wasn´t understood is that whenever I grew, inspite of doing the same exercises in rehabilitation, the pool and everything else, I returned to fall and the degrees of scoliosis rose. Thus, I was like that for at least three years improving and worsening without arriving to a stable and progressive situation.

It was then when we knew the team of Dr. Royo that planted the problem, or better said, a solution for syringomyelia. Of which one of the reasons of theses changes could be the tension in the column and that every time it grew it tightened and caused worse scoliosis in spite of the rehabilitation exercises.

It was in 1992 when I was 18 years old that we decided to operate me to free my column. It wasn´t an easy decision to make since I was the guinea pig and the third case for Dr Royo´s theory but after the visit and consultatiing various Doctors, to obtain a third opinion, we decided to go ahead with it. The majority commented to us that the operation itself, consists of the cutting of the Filum Terminal, it wasn´t risky, as long as they don´t touch the marrow and there could be an alternative to the operation by inserting an iron bar in my spinal cord. The truth is that the operation went really well and I feel more free, definetly more stretched out and certainly more relaxed without discomfort in my back. Bárbara Martínezz E-mail: [email protected]