Bruno Portelli. Syringomyelia-Syringobulbia, Arnold Chiari I Syndrome and Scoliosis

Published by ICSEB at 15 October, 2006

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.