Published by ICSEB at 1 October, 2019
Testimony update: 2019
I would like to give my testimony 10 years after my Filum Terminale Section practiced in Barcelona.
Dr. ROYO operated on me in 2009; I can affirm that I am fine, I would say very well compared to my status in 2009 (see testimonial of the postoperative from 2009). Many signs have disappeared and headaches are almost non-existent. If they appear, they are minimal and fleeting and largely bearable without any medication. Unfortunately, I am back in Barcelona, not for me, but for my daughter who also has Arnold-Chiari syndrome.
In France, of course, doctors tell you that it is not a hereditary disease. However, my daughter has the same pathology than me, it is strange … since it is not a congenital malformation for French health. But without a doubt, we went to Barcelona.
I hope that for her, the surgery will be a success as in my case, so that she can continue her life with serenity. I hope this testimony will help patients who have doubts.
I would like to thank the Barcelona team for their hospitality and, especially, their knowledge that allows giving fullness to the life of the patients.
Date of intervention: February 2009
My name is Valérie, I am 43 years old, live in France and suffer from Arnold Chiari I Syndrome.
It all started eleven years ago right after my first labor. I started to suffer very strong headaches when laughing, coughing or sneezing. As time went by, the pain grew stronger, almost becoming permanent, very rough and hard to control.
Two years ago in 2007, I could not stand this pain anymore and I asked my doctor if I could have an MRI done to control both of my cervical protrusions. I was then diagnosed with the Arnold Chiari Syndrome.
I went to see a neurologist and neurosurgeon because the pain came back unbearable and I could not go to work anymore.
The neurosurgeon told me I could have the surgery done but while being able to stand the pain it was better not to do anything since he could not guarantee the disappearance of the pain.
I finally decided not to do anything, since opening my skull without having a good result left me amazed. I took many different treatments during 2 years to calm my pain, treatments that have made me gain more than 20kg! Besides, they did not calm me.
I started to look through Internet until I found Dr. Royo´s webpage. I immediately got in contact with French operated patients and learned about their stories.
In June 2008 my state got worse at a fast paste. After 6 months some new symptoms appeared:
– Loss of balance.
– Loss of strength in arms and legs.
– Chocking often.
– Difficulty in breathing.
– Pain in my ribs and chest.
– Permanent Asthemia.
– Paraesthesia in hands and feet.
– Neck stiffness from strong pain when moving.
– Not able to stand still or sit for a long time.
I had an uncomfortable sensation hard to explain and especially the headaches, which only calmed when I laid on my back.
I decided to go see Dr. Royo in February 2009 because I didn´t want to have the craniotomy done, a traditional intervention practiced in France.
I had the medical visit on Monday, had the intervention of the section of the filum terminale on Tuesday and was discharged from the clinic on Wednesday.
I was so happy when I noticed that my head didn´t hurt anymore! I was able to return to France sitting instead of laying down in the car like on my way here.
Now it has been 7 months from the intervention and I feel much better.
Although some symptoms remain, I should mention the following:
– The headaches are almost inexistent and do not persist as before. They are less violent and pacify faster without treatment.
– Disappearance of pain in my ribs and chest.
– Disappearance in difficulty in breathing.
– The head movements are easier.
– Almost total disappearance of incontinence.
I still have sometimes instability when making big efforts but I have less Paresthesias.
I think one must have a lot of patience and not be in a hurry, because time will do the rest. My daughters have recovered a mother who now smiles.
I thank Dr. Royo and his team for giving me back the desire to live.
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