Surgery date: June 2011

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.

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.

Contact Email: [email protected]  

Surgery date: March 2016

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.

Date of Surgery: January 2013

 

Hello,

My name is Luz Belliard. I am 53 years old. I am from Dominican Republic and l live in Boston, MA. 4 years ago (16/12/2010), I was operated for “Arnold Chiari Syndrome” at Mass General Hospital in Boston. It was a very risky brain surgery that lasted 7 hours.

The first 11 months after this surgery were wonderful. All of my symptoms had disappeared. But in November 2011, my nightmare started once again. I started having dizziness and headaches.

On 24^th December 2011, when I was singing in the church, I fainted. Since then, I started having the same symptoms that I used to have before the surgery.

I had severe pain and pressure in the head (like electric shocks); unsteadiness; stiff neck; dizziness (that used to occur regularly after I used to feel the pressure in the head); leg pain especially in the right one and in the arm (swelling in the knees, weakness and sometimes tingling); severe back pain; neck discomfort, which prevented me from taking my head backwards. When I stopped quickly or turned my head, I felt the pressure and it used to produce imbalance in the body. I couldn’t go up or down stairs alone, because immediately in the third or fourth step I could not stand the pressure in my head and dizziness. It caused the difficulty in breathing and very often I had breathlessness. I was always tired; I used to get tired even while doing my bed. I used to be a restless person, I never used to stop, I was always active. With all these problems, my whole life had changed. For me the summer and winter were the same, as I was always cold; sensations of tinnitus and suffered from anaemia and chronic constipation.

From December 2011 until today all the time I have been in the hospital visiting different neurologists and have lost the count of all the medical tests that I’ve gone through, receiving different diagnoses. So far, none of the doctors or the surgeons who operated me, wanted to admit that I had the same symptoms as before the operation. Without help from doctors, my sister and my brother began searching on the Internet and found all the information about Dr. Miguel B. Royo Salvador.

2 years ago (1/15/2013), I was operated in Barcelona (Spain) at the Institut Chiari & Siringomielia & Escoliosis de Barcelona by Dr. Miguel B. Royo Salvador and his team. When I came for the surgery, I was in very bad shape and came on a wheelchair; the right side of my body was not working well, the head pressures were constant, I had pains, fatigue, etc., and all other symptoms related to the disease.

The team of Dr. Royo Salvador received me very well, with professionalism and respect. I was evaluated and routine test were performed. On the day of the surgery I was hospitalized in the clinic, I thought I was in a 5-star hotel and Dr. Royo himself received me. The operation took only 45 minutes and the next day I was walking. I spent two days in the hospital. When I left, the doctor told me to go for a walk around Barcelona and we did the same. A week later I returned to Boston, Massachusetts where I live. After one month, I had recovered completely and all my symptoms had disappeared. I started following my normal life, “full time” work and doing all my routine things in the house and some exercise. I had recovered my life back again.

My recommendation for all people suffering from this disease is to get diagnosed immediately, not to waste time and it is best to have surgery with Dr. Royo. In this way the recovery is faster and the damages are less. I want to thank God, Dr. Royo and his team for giving me back my health and life. Thanks to all my family and my friends for supporting me and not leaving me alone at this stage of my life.

In case of any doubt or question, you can contact me.

Thanks a lot

Luz Belliard

(617) 899-3886

[email protected]

EMIL, 5 years old

Date of surgery: November 2012

Emil (born November 2008) fell ill in August 2010: he stopped walking; he was completely flaccid (his development had been normal before). The doctors did not know what was going on. They carried out different exams and reached the conclusion that he probably had myelitis. They had not seen anything worrying in the magnetic resonance images (only three years later a radiologist told us that there was a descent of the cerebellar tonsils of 7mm, which had been considered to be “normal”). Emil was recovering slowly. Two months later, he started to walk again, but with a limp. We went to see different doctors and they introduced different theories….They found that Emil was paralyzed in his the left side of his body. Since his return from hospital he has been rehabilitated. We repeated the resonance three months later. This time, the doctors observed the descent of the cerebellar tonsils to be 11mm and they suggested we approach a neurosurgeon. We went to Poznan to see a doctor, who a few minutes into the appointment indicated a decompression, based on head inclination that Emil supposedly had. Emil had a “partial sub-occipital decompression” in March 2011 in Poznan. Afterwards he started rehab at several centres, at home and with private rehabilitators…He fell over a lot when walking, he did not control bladder and bowel, his left hand was always closed in a fist (the ENoG showed that 60% of nerves were damaged), he would adopt a “chair” position when standing. The magnetic resonance was repeated in January 2012, it showed that the descent of the cerebellar was of 15mm and additionally three syringomyelic cavities had appeared. By August 2012 (in less than seven months), those three cavities had increased their diameter to the nearly the width of the spinal cord, and three new ones had appeared. A professor form Warsaw indicated a second craniectomy. We were terrified by how quickly the damage to our son’s head and spinal cord was appearing. And on top, after applying the only “treatment” method that we had been offered in Poland, the cavities within the spinal cord, that had not been there before, appeared. And now the doctors wanted to repeat the same surgery…Literally a few days before the scheduled decompression, we received information about the treatment in Barcelona. We quickly took a decision. We cancelled the surgery and scheduled the procedure in Spain (November 2012). Right after the surgery, we did not observe any dramatic changes. It seemed that the hand was looser, not as tight as before. Two weeks after our return to Poland, Emil’s state worsened substantively (once again my son was not able to walk); this lasted for about two weeks. Then the improvement started. Initially, he improved until reaching the state from before the surgery, and later he got even better. We went to see some doctors in Poland regarding the worsening’ cause. The neurologist told us that the surgery had neither helped nor done any harm, and so she understood that we had been “tricked”. She gave us a prescription for a new resonance. We went to hospital in April 2013. We told the doctors that Emil’s state was improving, but they did not believe us. The changes on the resonance were minimal. The resonance for comparison had been done three months before the surgery in Barcelona. For us, with common sense, this was a very good sign, as the changes had been progressing at an alarming rate before. The neurologists however told us to consult the neurosurgeon who had performed the craniectomy, in order to drain the cavities (which of course is a life-threatening procedure). In contrast, we contacted the neurosurgeon in Barcelona and consulted a radiologist from Poznan, who measured the cavities before and after the surgery. These consults calmed us down. Additionally, we observed some improvements ourselves – Emil was walking better; he was straighter when standing (he also received intensive rehabilitation). The following resonance was done in February 2014 (ten months after the last one). No change was observed. Emil is now in kindergarten and does activities like dance, judo, football, and swimming. He is just like his peers. He continues with rehabilitation. Not everything is perfect yet. Some problems with bladder and bowel control persist, but he does it much better than before; when he is naked you can see that not everything is well, but he functions like the other children in kindergarten (maybe he runs a bit slower). We went to see the neurologist in March 2014 who had told us the previous year that the surgery had not helped Emil. She now told us that he is much better (for example the Babinski sign disappeared). Thanks to the surgery and the rehabilitation, Emil does not cease to surprise me with his good state of health!

Surgery date: January 2011

My story is long and painful however I will share small details with you as my personal testimony. Apparently, I was born healthy and strong but at 8 years I began to have rare sensations as if I had received a strong hit in the chest, dizziness, sciatica, neck stiffness, severe headaches…

With 10 years the doctor thought everything would be fine after menstruation. But, my problems increased. With 14 years they realized that I had a tremendous scoliosis. With a lot of pain and tiredness I looked like a grandmother. At 23, after falling from small height, without any fracture, I atrophied my right hand and it paralized. Eight months later I was diagnosed with Chiari I malformation with syringomyelia at C2-T11/12 level. With 27 years I had suboccipital craniectomy surgery with duraplasty. Some symptoms disappeared after this like cramps that ran through my body as if I was receiving electric shocks. Other symptoms remained and over the years other symptoms appeared: intense pain in the fingers, lack of mobility in the upper limbs, lack of breathing capacity, hoarseness and dysphonia … I passed years as a patient in pain care unit. At the beginning of 2011 and after much investigating I decided to put my poor health in the hands of the Institut Chiari, Dr. Royo and his team. What a fortunate decision it was!

My levels of pain and strength have improved, and now I can sleep at night. After more than 40 years of illness I have found some peace. Although some injuries will always accompany me throughout my life and now it is not a torture. To all those who unfortunately are suffering from this disease, I request you to see the section of the filum terminale as the 1^st and the best option to stop the progression of their disease in time and to improve.

Some time ago, Dr. Royo operated my daughter also. Other doctors wanted to perform a craniectomy on her but couldn’t deceive me.

I’m sorry that I am not sharing more details about me but my work situation is not very clear and you will understand why I’m doing so.

If someone wants more information, you can contact me.

Cheers!

TEL: 91 7954470

Date of surgery: May 2009

My name is Diego Tasca and I am a patient with a diagnosis of a rare disease called Arnold Chiari Syndrome (ACHI). I discovered all this in 2003, when I suffered a cardiorespiratory arrest. I was taken to the E.R. of Piove Di Sacco hospital, and, after a cardiopulmonary resuscitation, I was admitted and with all the tests diagnosed with this to me unknown illness with a strange name that frightened me, especially because of the adjective “rare”. After being discharged from Piove di Sacco hospital, I took all the test results to Padua, to the neurosurgical unit, to see how to resolve or cure my problem, which wasn´t completely unknown after all, in spite of its rareness. I made an appointment with the head of the neurosurgery department, Dr. R. S., as my GP had advised me. Once the appointment was set, I went there and put my case into the hands of Dr. S.; with me was my mother, who has accompanied me on my long road of agony (she was strong despite of her worries). The doctor started to talk very calmly, looking at the images and reports of the physicians from Piove di Sacco, until my fear to be suffering from something serious was eased a little. The doctor explained that it wasn´t anything serious and that it could be compared to an appendicitis, a small incision on the base of the neck would be enough, a same day surgery, just one night of hospitalization and then I would be discharged to go home (I promise that these are the exact words that he told me, they are engraved in my heart). He also made a small drawing on a piece of paper to explain to me of what the illness and the surgery consisted. He told me: ” Imagine, we don´t even cut your hair” – obviously that wasn´t my main concern, nevertheless it gave me courage. He told me that they would call me as soon as a spot would open up, I paid 190€ for the consult as it was private, a consult with Dr. S., the best of Padua´s neurosurgery, the social security did not cover that. I went back o my normal life for a month and a half, then my mother phoned me: I had to come back home from work because the hospital had a spot for my surgery. I arrived at home, packed a bag with the necessary for a short stay as I had been told and I went to the neurosurgical unit at Padua hospital. I was admitted to the hospital on 16/07/2003 with history number XXXXX, they assigned me a bed while I was in standby for the day of the surgery. The next day I had all the tests done and signed the consents. Eight days went by before the surgery. On 24/07/2003 I underwent median suboccipital craniectomy, laminotomy C1 and duraplasty surgery, which is easy to write and pronounce, but I assure you that it isn´t easy to bare or to face. After the surgery, which according to what Dr.S. said was next to nothing, I woke up in the ICU. Completely insensitive to any movements and intubated all around, I could only move the eyes (and I asked myself: wasn´t this supposed to be a simple procedure?). I don´t know what exactly they did to me, nor how long the surgery lasted, when I woke up I couldn´t even distinguish any images, everything was blurry, I don´t know how many days I spent in the ICU, but enough to not believe in the words that Dr.S. said. It´s very ugly to look at the ceiling of the room all day long with fearful eyes, I didn´t even know what day it was, or since when I was there, or what was happening to me, or if I would overcome it, these are the questions that I asked myself continuously, like swords piercing my mind. After the stay in the ICU I went back on the ward and there I slowly started to understand, I promise you that the hospital stay was very difficult and painful. I was still having high fever and intense pains, the incision wasn´t small as I expected, and it is still visible at the back of my head. I had needles and an instrument monitoring my vital signs connected to me all over my body, strange machines that lightened up and controlled the state of my health; I don´t know and will never really know what was done to me in that surgery, I know I have a plate in the skull, I think of plastic material, the rest isn´t really understandable, neither in the medical history. I only remember the pain and the regret because of the lie I was told in the consult before the surgery. I swear that I was brave only because I saw people with conditions worse than mine around me: tumours, angiomas, etc. But I was wrong, because I still didn´t know of the seriousness of my illness; I remained in the hospital for thirteen days, I was discharged on the date 29/07/2003 and I went back home, very much affected and I wasn´t the same person as before anymore. The convalescence at home lasted a long time, I can´t quantify the time exactly – but the pain I can: it was a lot. I thought that that was normal after a surgery like this, and I tried to encourage myself every day. The fever didn´t go down, it was very high and made my head explode; a sneeze seemed like an explosion in my brain, it drove me crazy, I prayed not to sneeze or vomit, those were two fatal actions. I returned immediately to the hospital to the E.R., it wasn´t clear why the fever didn´t go down and it was thought of the risks or the contraindications of the surgery; rejection or an allergy to the type of material that the plate was made out of, it wasn´t clear, but on the contrary I understood very clearly their attempt to reopen my head to understand what was happening and to solve the problem. I was already exhausted, morally and physically, I rendered myself to any kind of torture or cure, I just didn´t want to feel any more pain. Then a doctor decided to try a drug-induced treatment and it worked, it hurt a lot and I felt light when they injected that drug through the instrument that I had plugged into my neck, but slowly I started feeling better; it seemed like the worst was over and with difficulty I went back to a life branded by pain, but normal. In the following months I did the control tests, CT, brain MRI, etc; everything seemed fine, and that´s how it was. It was difficult to start over and forget, but during three years I recovered my physical and mental strength. Then, one day, the health problems returned; through my GP I did many tests but everything turned out normal; the surgery apparently showed a good outcome, but in reality they just send me from one test to another without any results; they told me that it was a mental issue and insisted so much, that it became one in my eyes! They drove me crazy, but I was not crazy, it was them who didn´t know the pathology and its constant deterioration. I took a friend´s advise who suggested to going to a clinic for people with depressive or other disorders; I was very depressed, I tried to take my own life twice, I felt lost, useless, a burden for my family. I went to a check up with Dr. M and I told her my story, she decided to get me admitted to the clinic, I don´t even remember the exact date of when I entered the clinic, but I followed this friend´s advise and I did it. From the first day on it was like being in a prison for me, with a lot of drugs that didn´t help at all, whilst my illness was always getting worse, and with it my mood, but at the same time I made an effort and I met good people who only needed to talk and externalise their pain, I made many friends; nevertheless I was still getting worse, I wasn´t a smoker, but in that place I became one, three packets a day, I felt like in a cage that took freedom a away from me, today I am still in touch with people who are grateful to me for having been at their side. The doctor prescribed a treatment to follow at home and more psychiatric check ups; I went back home but my life was disturbed and the pain kept on increasing; in spite of this, I went back to work as if I was a different person, the drugs that I was taking changed my character and I wasn´t myself, I went on in my life with confidence, strength and the will-power. I continued with the check ups and test until 2008, then the illness started to deteriorate my body; before I weighed 85 kg and I went to weighing 65kg loosing 20kg; the depression was part of me, I moved away from everything and everybody, my body started to have no sensitivity and to be semi paralysed on the left, I didn´t feel hot or cold and didn´t feel the wounds that I got working, I only noticed when I saw the blood. I started to worry and explained it to the physician, who told me again that it was a mental problem; I couldn´t stand it anymore, without knowing the pathology and that without being a doctor I went ahead and switched on the computer and searched for information. Through the Internet the truth finally came to light: the illness was a rare pathology, that´s why the doctor´s didn´t know what to do; I finally found an institute in Spain, in Barcelona, that explained what the pathology was and that they could treat it at the Institut Chiari & Siringomielia & Escoliosis de Barcelona, I decided to contact them by email and this way my struggle for life began. The Institute answered and asked me to send in all my information, in order to assess a possible consult with Dr. Miguel B. Royo, and to see whether the Sectioning of the Filum Terminale surgery should be carried out; at the same time I went to a neurosurgical outpatient department in Padua, and explained the problem and surgical treatment possibility in Spain to the physician, the medical opinion was negative, he didn´t know the illness and according to him no Italian doctor would have done such a, according to them, risky and useless surgery; I listened, but the only thing that interested me was to end the pain in any way; I had to try. I travelled to Spain and arrived at the Institute, I met the doctor, who examined me; it wasn´t a mental problem, the illness had worsened very much, the doctor prescribed some tests at the CIMA clinic, and revealed that additionally to suffering from Arnold Chiari I some other very serious problems had appeared that conditioned the paralysis of the left side of the body: Syringomyelia, traction myelopathy, cervical lordosis, thoracic scoliosis. The doctor told me that the traction from the filum had caused 6 spinal disc herniations, 2 cervical, 2 thoracic and 2 lumbar, the “most problematic ones”. The doctor told me that the surgery would not rrepair all the damage that I had suffered, but that it would help; he decided to suggest the surgery, all from looking at the same images of I was told that they were fine in Italy; the illness had already progressed too much and causes many injuries, but I begged because I didn´t have anything left to loose. I had the surgery that lasted 30 minutes, compared to three hours, as soon as I woke up I got out of bed in good spirits. The control visit was set and I returned home; another pain but more strength; I came across sincere, honest and kind doctors a different world. A month went by and I went back for the control visit, more difficult expenses but I felt alive again thanks to Doctor Royo. I arrived in Spain, went to the check up and the doctor was surprised with the positive results of the surgery, I was pleased and he with me. I explained to the doctor that I had mobility problems in my legs; he explained that the illness had nothing to do with this, but that this was due to the consequences of the traction from the filum, which had caused the lumbar disc herniation, which damaged the sciatic nerves, he explained that a specific test with an infiltration using needles and an x-ray instrument in order to confirm whether a rhyzolisis procedure should be done. I am very thankful to Dr. Royo and his team for having returned hope to me, and a lot of strength for starting over, thank you for everything.

TASCA DIEGO. E-mail: [email protected]

Date of surgery: February 2011

Life testimonial

My name is Victoria Elena Estrada, I am Colombian, from Medellín, I am 51 years old, and I was diagnosed with Arnold Chiari I syndrome four years ago and I had a decompression, which did not work. I felt relatively well for six months and then the symptoms came back again and diminished my quality of life. I felt daily an intense headache which did not allow me to laugh, cough, sneeze, bend down, exercise, altogether things that reminded me of my illness. During the nights I woke up with an intense feeling of malaise in my hands so I would have to get up at whatever the time would be to shake them; I also felt an intense pain in the coccyx that had accompanied me for eight years and I had to sit on a special cushion, I underwent a caudal block under general anaesthesia, which did nor work for me.

All in all, there were a lot of factors that made me look further away from what was at my reach, and I found the Institut Chiari de Barcelona, where I found the solution to my problem. I wrote to them and send my exams, they responded that by the means of the excision of the Filum Terminale they could help me have a better quality of life, it would not eradicate the illness but at least it would stop its progress, so I took the decision to travel to Barcelona to undergo the surgery.

Now it´s been eight months since I had surgery and today I am a different person, I returned to life, I am happy, I am the person I was before the daily and aggressive symptomatology began – today I sing, dance, laugh, exercise, and I don´t have the worry that something is not functioning, my children and my husband are very happy to see me in my new state – they will have a mom and wife for a long time yet.

It is unbelievable, but the surgery is not painful, there is just the bother to have a small incision in the rear part of the hip, but after eight days you forget that you have been operated on, I did not have any problems on the way back to Colombia even though it was an eleven hours flight, two months after the surgery I started to exercise slowly and without any problems.

I want to tell everyone who reads this testimonial that you should not fear to consider this surgery as an alternative to the solution of your problem, if you are indicated to have it, they are a group of very expert physicians under the command of Dr. Royo, a very studied person and knowledgeable of this issue, he has taken many years of his life to investigate about this suffering that afflicts us, really the only thing I can say is: THANK YOU FOR EXISTING, DOCTOR.

Tel. (011574) 3165295566 Mail: [email protected]

Victoria’s video testimonial:

https://www.youtube.com/watch?feature=player_embedded&v=mZE72SIHPaE

Date of surgery: May 2010 Andorra 10th of April 2011 Hi, my name is Paula Gonçalves Fernández, I am 36 years old. After many years of consulting, thousands of tests of all kinas and without any result, in the month of July 2009, Dr. Miralles from Andorra, after seeing all the tests I was told to have done, he noticed that they hadn´t done any MRI of the brain and column, so he sent me to have one done and I was finally diagnosed with Arnold Chiari. The doctor sent me straight away to a Hospital in Barcelona where they attended me very nicely and communicated to me that I had to go through a craniotomy, and this is what was done, in the month of August 2009, I went through this surgery and everything went well. The headaches always remained the same and there was no way of calming the pain. I learned to go swimming on my back because I was told by the Neurosurgeon that this was good to relax the muscles in the neck and back, but still, there were no changes. In the month of January 2010, my Neurosurgeon told me that he had to block my head with my neck with a titanium plate. This was quite upsetting for my family; and me since this would leave me with a disability for the rest of my life, meaning without being able to move my head upwards, downwards or being able to turn my neck to either sides. God gave me strength to keep on going and as I looked on the Internet, I found the “Institut Chiari de Barcelona”, therefore, I called right away. They treated me very nicely and so I asked for an appointment and they gave me one a few days later. The first time I saw Dr. Miguel Royo I felt a sensation of knowing it was him who was going to help. I was feeling this bad since I was 30 years old, meaning 6 years of my life suffering non stop until I even got to weigh 42kg. After the first examination, the doctor guaranteed me that my life could get better, so without doubting it after so much suffering I said yes to him and on the 5th of May 2010, almost a year ago, I went through the surgery of the filum terminale by Dr. Miguel Royo in the Cima clinic of Barcelona. My case is really difficult to be explained with words, because I am even surprise with myself. I was really bad, I felt so bad that I did not know what was happening to me and no one gave me a solution, I could not walk on my own, I had to hold on my husband and my two children: a 13 year old girl and an 8 year old boy. I had to lean on them because I had a lot of vertigo, I had moments where I felt very cold, my feet became numb as well as my hands, my eyes looked like butterflies that couldn´t stay still, I could not drive, however I had my driver´s license since 14 years ago. Now thanks to God, to Dr. Royo and his team I can walk on my own, I can cross the street without having problems looking to the sides like I had before the surgery, I can drive my car and drive to work. For me it was like being born again, when I´d lay on my bed or on the couch to rest, I could not watch TV, however, now I can. I actually weigh 55 kg, which is my normal weight. I am different, I´m prettier, with more strength to carry on living, happier, before, I was always lifeless, sad, I didn´t even have strength in helping bathe my young son… I bless the day in which I went to Dr. Royo´s consultation and when I went through the surgery. I entered the clinic Cima on a Monday and on Wednesday afternoon I was already home in Andorra. By the way, the Cima clinic is incredible, they treat you very well. After 4 months I already started to notice a change. I noticed that something was getting better in my life, the first change I noticed was that I could walk straight on the street, I had less vertigo everyday, the Nystagmus kept disappearing every day, I could watch the television better and etc. I thank Dr. Royo for all of this and to his professional team, which apart from being doctors, they are also persons who know how to listen to the patients and try to help them the best west professionally and humanly. A thousand thank you´s to all. From here I want to encourage all the people who suffer from this disease to go and visit Dr. Royo, to have faith in his hands, that he will help you, not to loose hope that from one day to the other everything can change. I wish strength for all and a lot of luck. Sincerely, Paula Gonçalves Fernades E-mail: [email protected]

Date of intervention: December 2008

Hello my name is Kerrin Allen and I am from Sydney, Australia.

I am very fortunate to have found Dr Royo and his team at the Chiari, Syringomyelia & Scoliosis Institute of Barcelona. It helped me a great deal reading other patients stories, and I am happy to share details of mine. I was diagnosed with Chiari Syndrome and Thoracic Syringomyelia in August 2007, after being admitted to hospital for testing. My symptoms included severe headaches and right leg pain and weakness. This eventually resulted in right leg paralysis and lack of sensation.

I had posterior fossa decompression surgery performed in Sydney, Australia in March 2008. The surgery was delayed as I had developed blood clots in my leg. My symptoms initially improved greatly, the headaches lessened and the leg paralysis improved to weakness, and I was able to walk around with a leg brace.

After a while my symptoms worsened again. The weakness in my right leg progressed and affected my left leg also. I became unable to stand without leg braces. My headaches, back pain and bladder problems worsened, and I began getting pain and pins & needles in my legs and burning in the soles of my feet. I also noticed odd sensations in my hands. I was again admitted to hospital for testing in Sydney, Australia and released without knowing what was causing my symptoms. Dr Royo reviewed my scans and then saw me in Barcelona in December 2008. I was amazed that he could help me and at the other things he picked up like scoliosis, nystagmus and right hand weakness. After reviewing me in December 2008 he performed a minimally invasive section of the filum terminale. This was to prevent my symptoms deteriorating and to eliminate the cause of my Chiari Syndrome. The pain from the surgery was minor. Post surgery I woke up and noticed the pain and the pins & needles in my spine and legs were gone! Nine hours after surgery I could walk without any problem. I was standing up straighter, my headaches had disappeared, I could also see better and think clearly! My bladder problems have cleared and I feel like a new person. Other minor symptoms will continue to improve as my nervous system settles down and recovers. I was very fortunate that I didn´t have irreversible nerve damage. My walking continues to improve as I gain condition and my muscles strengthen. I am very happy with the results! Dr Royo´s research and surgical skills have completely changed my life! I found him and his staff to be very professional, caring, understanding and passionate about helping people. I hope Doctors in Australia adopt his technique to help others here. I will be forever grateful to Dr Royo, Samantha and his staff for helping me, and to my family for supporting me and making this possible. Please feel free to contact me if you would like further information at [email protected]

Date of intervention: January 2008

My name is Rosalia Mocciaro, I´m a 59 year old woman, born in Sicilia and a resident of Palermo. I´m a graduate of biology and my profession is teaching. Until the age of 55, I didn´t know that I was suffering from a rare disease called Arnold Chiari Syndromeand Siringomelia.

My total ignorance was due to various reasons: in the first place, the fact that the technology of that time did not permit an in-depth investigation, like the techniques developed today, to the point of now being common medical methods. In spite of this, in the following years (in the 90´s), it´s true that the Sicilian specialists, analysts and neurosurgeons that I was consulting in the step by step, slow, unrelenting advance of my disease, were completely insufficient and professionally incompetent. It´s the moment to remember that disorders like scoliosis, loss of strength in the extremities and the various pains in the head and neck that I started suffering, more precisely in my years of maturity, were interpreted (irresponsibly, superficially and lightly) as “school” scoliosis or sinusitis and never, I say never, did any of the specialists that I consulted advise me or prescribe me to do a resonance as the correct diagnostic procedure. This confirms that in Italy, and I dare say also in the rest of Italy, the doctors do not begin with a correct diagnostic procedure, that is to say facing the problem backwards, starting with the eventuality of eliminating something serious with the proper tests and consider the possibilities of obvious and banal disorders. In fact, such a procedure would have permitted me to know in advance, way in advance, the right and correct analysis of my disease; with all the natural consequences of an opportune intervention, and not an intervention that instead- for all that was mentioned before- was inadequate and which I had to suffer with more years, a risky, delicate and invasive operation that led me to long, suffering post-operative results after my first and unfortunate only intervention of cervical decompression. All this said, here I´m going to describe – for more clarity – the chronological story of my disease from the moment of its appearance. At approximately the age of 20, I remember always having a pain in the thigh and right leg with diminished sensitivity to heat on the whole right side, with burn problems when I was near a source of heat. I always investigated but none of the doctors knew how to give me adequate answers. Afterwards, throughout the years I noticed a diminishment of strength in the left leg and arm, with decrease of movement and constant increase of the scoliosis, forming a severe kyphosis and pains that kept getting worse. I had continuous x-rays, always accompanied with an infinite series of medical tests, so many that I can clearly say that I have spent a fortune; the answer they gave me was always the same: ” Madame, you have a scoliosis that you should have taken care of when you were young”. Because of this mistaken, superficial and unprofessional diagnosis, for years I underwent inappropriate physical therapy that in the area of Palermo is usually very unprofessional, not only totally inadequate. Besides, during my life I always had problems suffering from the cold, this induced me to hate the winter, while the best season (that gave me a relaxing respite) was always the summer, dispelling my debilitating disorders. Through the years I noticed how some of the problems got worse: for example walking became more insecure and difficult, constantly losing my balance and falling. In fact it´s not by chance that I suffered more broken bones in the last years. I stumbled precisely with the left foot because of the decrease of strength in the left leg, until when I was 48 (after a strong flu), I started to suffer horrible pains in the neck and nape of the neck irradiating to the whole head; analgesics were not enough, the medical consultations diagnosed, with pedantic insistence, a sinusitis and cephalic muscular tension. I continued with these pains that were diagnosed as arthritis until 2003, until one day I decided, with the advice of an unknown but honest therapist, and of my own will, to have a cervical and dorsal MRI. The result of this examination was that I had a rare disease, precisely Arnold Chiari associated with Siringomelia cervical from C1 to C7. I didn´t know what to do because I didn´t know what this was, then I took my MRI to a neurologist in Palermo who didn´t know how to behave with me, but with an attitude of “psychological terrorism”, He then informed me that I should have gone immediately to a neurosurgeon as my situation was very dangerous. That´s when I had other medical consultations, until a notable neurologist from Palermo convinced me to see a neurosurgeon from a well known and equipped scientific center of our beloved Peninsula Italica (the Instituto C. Besta de Milan for clearing everything up for us). They told me about Professor Broggi (as a major authority in this field). In September 2004 I went to Milan to consult with this professor; who with a trite, cold, arrogant and pretentious attitude typical of the “influential members” sadly famous in Italy, insinuated that my situation was very severe, and then advised me to have decompression surgery, explaining that this intervention would resolve the problem and that with time it would permit me to have a better quality of life (his words). The 3rd of November 2004 I underwent this surgery in the Scientific Institute of recovery and cure (sniff, sniff!) C. Besta de Milan. The operation caused me a long, suffering and painful postoperative period that lasted six months. Amongst all the problems, there still remained the problem of walking and added to that, constantly unstable walking, pain in the back of the neck, intensifying in the neck and becoming more evident; adding to that, a terrible dysphasia of liquids. In fact, since the decompression, I was never well. After the operation, I wisely had a resonance done every year and after three years the situation did not improve at all, on the contrary, the siringomelia of C6-C7 spread after the operation. Very worried, I searched for news on the Internet about this rare and complex disease, and discovered that in Spain, more specifically in Barcelona, is Dr. Royo, a prestigious neurosurgeon who performs the section of the Phylum terminale and that this intervention (according to Dr. Royo´s theory) blocks the disease. Confident and enthusiastic, I discovered that together with this Doctor´s name was an efficient medical center, the Corachan Clinic, which is a prestigious, well-known clinic for many Italians, affected with this rare disease. I also learned about the Torino Association which is contacted by many unfortunate people with Arnold Chiari I disease and there are many written and oral testimonies about this miraculous practice. I went ahead and started to make intense and useful contacts with Italian patients in different parts of our loved peninsula who were operated on in Spain, obtaining enthusiastic testimonials not only of certain improvements but at times, complete and almost immediate cures. Obviously, that pushed me forward with strength and great enthusiasm down this path. In November of 2007 I got in contact with the Neurological Institute and had a consultation on the 28th of November 2007. There, Dr. Royo advised me to have this intervention as it was indicated and adequate in my situation. He commented that the decompression procedure was quite obsolete besides being invasive and very dangerous. This news was confirmed to me by more testimonials and neither can you underestimate the mortality rate (as some patients don´t come out alive and many have their quality of life worsen). I took care of the dossier to obtain the refund of the costs from the Region of Sicily, but I won´t get involved in the complicated Italian bureaucracy. The cost of the intervention was 12.560Euros and I (like many other patients) did not have this amount. But with determination and will power I decided to go ahead with the surgery. With the passionate help of my closest relatives, I managed to raise the necessary money. I discovered that to get a refund I needed a certification from a neurosurgeon from a public hospital in Palermo, but after consulting three neurosurgeons, I got a negative response from all of them, with the same reason: Dr. Royo´s technique was not yet recognized in Italy, so the certificate to obtain the authorization from the “Ispettorato Della sanita de Palermo” could not be stipulated. It comes to my mind that many rich citizens have surgery abroad and that knowing the right people and having “connections”, they often obtain substantial help from the wide network of organizations and entities and from charitable foundations in our country. More decided and realistic, I imagine, I followed the trail of that famous (super-famous boss of the mafia) who some years ago, through the local social security, !!!! obtained the authorization and financial help for a banal prostrate operation in a prestigious French clinic!!!! Despite the negative response from the neurosurgeons of Palermo (from whom I was able to confirm the total ignorance on the subject and besides a hostile and cooperative attitude of silence and sealed agreement of self-protection) I went to Barcelona, because this technique adopted by Dr. Royo, in Europe is only practiced there; with the exception of the United States (where the Professor Bolognese operates in the Chiari Institute of New York). I have to say that during the time that I was looking for the authorization for the operation, many times solicited, insistent and erroneously the neurosurgeons of Palermo informed me that this operation was also done in Italy. This news is totally false (except two shy attempts by anonymous Italian neurosurgeons in anonymous hospitals), probably not capable of guaranteeing the great experience accumulated by Dr. Royo in the thirty years of his study and career in this field. Very aware that I had to put my life in the hands of a courageous personality, and in contrast to the other intervention in Besta for the extreme danger of the decompression, the 31st of January 2008 I was operated on, with very positive post-operative results. For the moment, obviously some ups and downs, but on the whole, normal. Obviously, I´m hoping to notice considerable improvements with this intervention, and at least I am confident, while waiting for verification, that the disease has been blocked (with another control resonance).

E-mail: [email protected]

Date of intervention: July 2007

Hello my name is Enara Gorbeña, I am 21 years old and suffer from Arnold Chiari I, Syringomyelia and Scoliosis.

My problems started when I was eight, when they diagnosed me with a 26 degree Scoliosis that they pretended to correct using an orthopedic brace and persistent swimming. When I was fifteen, after seven years using the brace for 23 hours per day (I only took it off during the hour of swimming), the Scoliosis had progressed unexpectedly. This motivated me to see a famous traumatologist, who diagnosed me the existence of a Syringomyelic cyst from the origin of the Scoliosis and sent me to the neurologic specialists.

Once they diagnosed correctly by the public health department and confirmed properly by another prestigious private entity and by different consensus criteria from all the consulted specialists, I proceeded to put myself through a Meningoplastia with a sub-occipital craniotomy at 15 years of age.

I was hoping that this surgery I suffered would be the definite solution to a problem that had ruined my childhood. However, far from reality, unfortunately, the cyst continues without experiencing any kind of change and the Scoliosis progresses at an unstoppable pace just how the traumatologist had informed me last year. For this situation, his inicial proposal was to go through the intervention to straighten up the column and even though after the pertinent consultation with neurosurgery we descarted this possibility given the elevated risk of tetraplegia. In this unending street, when I was looking on internet, I found the web page of the “Instituto Neurologico” and I entered the patient´s forum. A young patient with the same case as mine, thanks to her I discovered Doctor Royo´s knowledge and his technique. Finally I went through the section of the filum terminale last summer and the experience has been totally satisfactory. Although I still cannot comment on any improvements until time passes by and I get a new Scoliogram and MRIs done. I cannot stop thinking about how I could have avoided the previous traumatic surgery. I would like to transmit to all the people who consult this forum, the huge hope it has given me discovering Dr. Royo´s technique and being the first time they comment me about a future with no risks, injuries or physical limitations for the rest of my life. If you wish more information please do not hesitate in emailing me at [email protected] Warm greetings.

Date of intervention: December 2006

Hello, I am called Herminia, i live in Malaga and am 57 years old. What I want from my testimony is to be able to help patients understand that there is hope, and like I, we thought that our future was destined to a wheelchair.

I have been suffering symptoms of Arnold Chiari I Syndrome and Syringomeylia from the year 1987, and it wasn´t until year 1997 when they discovered it, because of my ailment. During those ten years I went from traumatologist to traumatologist and neurologist to neurologist, until peculiarly, a physiotherapist was the one who guessed it right, the disease. As of that moment, in only months I was intervened on the craniotomy, a highly dangerous operation in which I took more than 6 months to recuperate myself. In spite the risk of this intervention I healed wonderfully, although the suffering didn´t serve as much, even though that neither the pain nor the symptoms diminished absolutely.

On the contrary, little by little they were increasing. Thus, for example, they diagnosed me having apnoea dreams and an oesophagus ulcer that obliged me for more than one year to feed me only liquids and papilla´s, and even going through days without eating as I couldn´t support the pain swallowing. But it got worse adding to everything my aliments, the scoliosis. At the moment I felt totally indignant and defrauded, also abandoned, it seemed like if nobody had interest to help me.

They say that when something bad happens something good is on its way. In November of 2006 I had a loss of knowledge and I am still waiting for them to give me an answer. I collapsed to the ground and I hurt my two ankles. As of that moment my spirit against fighting the illness I collapsed and all I thought I had left, was to resign. Miraculously, my daughters desperation took them to investigate on their own accord through Internet, and it was like that how they found me the doctor, Dr Don Miguel B. Royo. We sent an email, waiting, an his reply was immediate. In only fifteen days I was taken care of in Barcelona, and I put all my hopes into the hands of the medicine of this genius. That same day, the 13th of December of 2006, they did explorations (tests, examinations), day 14th they operated on me and the 15th of December, after almost a year without being able to eat, I ate 2 patty cakes for breakfast before going to the hospital. It could be a silly anecdote, but for me, it was the first day of my new life. Since then the symptoms, of many, have improved. We aren´t deceived, we can´t travel into the past, and the damage done doesn´t have to return, but my future now is another thanks to the Filum Terminale operation. Since then, the pain has diminished considerably, having in mind that I didn´t take, nor if I wanted to, one of my old tablets. In addition, I have recovered part of the tact in the right hand and the tingles have ceased. No longer do I have dizziness, nor do my legs hurt, and in general, I feel better, happier and more active than when I was 20 years old, or at least it´s how I feel. By all means I forgot to say, from that day i eat perfectly. Thank you for fighting against this illness with your talent, The Doctor demonstrates a warm and gentle character towards the patient. E-mail: [email protected]

Date of intervention: October 2006

My name is Bruno Portelli I am a 35 year old Italian. I have been sick since I was 16. It all happened suddenly starting with Dyplopia (double vision) and a loss of balance, getting worse until they diagnosed me with Syringomyelia with Syringobulbia associated with Idiopathic Scoliosis.

At that time, the doctors chose not to operate on me since they had to do an intern shunt from my cervical injuries and would have brought many risks, even if the indication was appropriate. I then had a more stable period with also others that were slow and worsening. In 1994 I started to have problems like lack of tearing in the eyes and Tinnitus. In 1995 I got surgery done to correct my Dyplopia and since then a series of worsenings occur which included lack of balance, sensitivity alteration and Spasticity on my left arm.

The reappearance of the Dyplopia, constipation, semi intestinal paralysis and major difficulty in maintaining my balance and walking normally made me unfortunately take the decision to get surgery done in 1998.

By the end of 2000 I had surgery done in Verona, with the classical technique (sub occipital craniectomy and dural plastia implant), from then on I could not walk on my own. The operation left me practically invalid, having lost progressively the use of my legs and left arm. In 2006, after a Banal flue, I had difficulties in breathing with semi Paralysis in the diaphragmatic muscles. That is when I heard about Doctor Royo, with whom I contacted with immediately. After having visited me he confirmed that my case was already quite advanced. He explained that with the section of the filum terminale the inexorable development of this illness could be stopped and mainly try to attenuate part of the consequences the Syringomyelia had caused me. After two hours after the operation I felt perfectly awake and vigilant. I noticed I could breath with no problem and I got to open my hands, which were closed before, mainly the left one. The clinic setting and neurological was stable for more or less 20 days. I had a retrocession and then reached the definite stability which consisted in the following: • My neck had more mobility after the operation, now it is almost like before with a difference in not feeling the strain like I did at first. • The thermal sensation and coetaneous sensitivity got slightly better. • My arms suffer less from the strength deficit and my hands are more functional, although the arms abduction capacity upwards is unchanged. • The capacity of my balance and deambulation with assistance got better; occasionally I had myoclonic episodes precedent from the operation. • Varied Intestinal motility; the problems remain inheritant suboclusions. I hope that this painful experience will serve to the people who suffer from this disease and if they are lucky to be in better conditions than me can reach to Dr. Royo in time so that he can help them, hopefully with better results; evitating useless and invalid operations which leave aftereffects for the rest of your life. Dr. Royo: The day before of the operation Bruno could not maintain himself sitting down on the bed needing three people to lift him up until leaning him against the wall. We did record everything including when five hours after the operation how he stood up from the chair with the only help of his sister in law´s arm.