Rita Capobianco. Myelopathy with Arnold Chiari I Syndrome, Syingomyelia and Idiopathic Scoliosis.

Published by ICSEB at 16 May, 2010

Date of surgery: May 2008

Hello everybody, my name is Rita Capoblianco and I live in Rome. Before telling you my story, I would like to give Dr. Royo a double thank you: first for what he did for me, and second for having offered me the possibility to help, through my testimony, those who suffer like me from Arnold Chiari I and Syringomyelia.

A sincere thanks also, to Ms. Gioia Lue and the whole team from the Chiari Institute of Barcelona. I was about 20 years old when I started having pains in the trapezoids, but only there. I had different types of massages, and then following the years and pain, manipulation, traction, physical therapy, acupuncture, getting only temporary benefits. As the MRI still didn´t exist, I continued having x-rays from which it turned out I had mild scoliosis and cervical arthritis. Luckily, I could still work as a dancer and actress.

When I was about 43 years old, besides the pains in the trapezoids, I also had sharp pains in the temples, especially when I coughed, when I was in places with loud music, when I returned home late at night, or in any case, every time I made an effort. In 2004 I had my first MRI of the neck area, but they didn´t diagnose Arnold Chiari I. Not knowing what to do, I continued having massages and physical therapy treatments; only after discovering the cause of my pains, did I realize the danger that I was running during thirty years of getting the wrong treatments.

In the last years, the pain, especially in the right trapezoid, kept getting worse. I decided to sign up in a gym, hoping that it would help me, and at first, I had the feeling that I was a little better. But after three months the pain became permanent and more and more unbearable. I felt unstable and weak more frequently when I made efforts or in places full of people and with loud music I felt incredible stabs of pain in the temples; if I turned my head to look right or left I felt strong pains in the neck and head and I swayed, my heart beat irregularly and I couldn´t always swallow.

Still with x-rays, manipulations and anti-inflammatory but without any results. A friend, who knew about my constant pains, advised me to have another MRI, and the results said that I had Syringomyelia and Arnold Chiari I.

That´s how my pilgrimage began between orthopedists, physiologists, and neurologists; more medication and useless therapies which, besides, could have caused me bad physical damage. The orthopedist advised me to put a dental prosthesis and he gave me a month´s cure of anti-inflammatory, muscle relaxers, etc. The only result was intoxication and bad dermatitis. One physiologist prescribed integrators and individual posture exercises and another some drops for arteriosclerosis and group posture exercises; the neurologist suggested that I repeat the MRI in 6 months.

I also consulted various neurosurgeons to hear their opinions. The first one, with a smile on his face, told me that I´d have to have cranial surgery; having the impression that he wasn´t that sane, I decided to listen to the opinion of another specialist. The next one advised me to wait six months and then repeat the MRIs, the third prescribed evoked potentials to confirm the need to have an operation and the fourth confirmed that I had to have surgery.

I did the new tests and brought them to the third neurosurgeon who advised me to urgently have decompression surgery, stating that otherwise, I would risk ending up in a wheelchair. Seeing me excessively worried and crying, he added that there was nothing to fear from the operation; they would have to cut a “little lock” of hair, make a “little cut” in the crania and put a little plaque; he guaranteed that the pains would disappear almost immediately. Frightened by what could happen to me if I waited more, I decided to be hospitalized for the suboccipital craniotomy.

The day before the surgery a nurse passed by my room and told me that after the operation I would be brought to reanimation; seeing that all the other patients on my floor returned to their rooms, I began to suspect something. At night a nurse came into my room with three razors in her hands for preoperative hair removal: they would shave half of my head and not a “little lock” like the medical service chief had told me. Faced with my rejection she answered: “You will be months with your head covered with glue and blood and you´re worried about your hair?” I thought I was living a nightmare. During the night, in panic, I had strong spasms in my left arm and a start of herpes zoster and the next morning, once in the operating room, I decided not to let myself be operated on. But, once out of the hospital, I was more confused than before

I made other visits and saw other specialists who told me that I should have had the operation, and at last, thanks to my brother who had searched on the Internet, I learned about the surgery that wouldn´t put my either my health or life at risk: the minimally invasive section of the filum terminal. After having contacted some people who had had this operation, and who said they had obtained obvious improvements, I was convinced that that was the road to take. I arrived at the Chiari Institute of Barcelona, where after a very attentive visit, I was operated on by Dr. Royo; the next day I returned to Rome.

More than two years have gone by and the pains are increasingly diminishing. Now I can once again stay in places with loud music, or in places full of people, without noticing pain or swaying; I have reacquired strength in my extremities, feeling in other parts of the body and I can do everything, though at times, when I´m more stressed or tired, my trapezoids harden, sometimes I have a little headache and dizziness, especially if I put my head back. One month ago I could even dance: I cried for joy. As seen through the MRIs, the two diseases have stopped, like they had assured me, and this was the most important thing. A few years ago, at the most difficult moment of my life, a kind and honest Italian neurosurgeon told me: “We only have one life, we are the ones who have to decide what to do with it. You don´t have a tumor and you´re not sitting in a wheel chair, so think about it a million times before letting anyone open your head, try everything possible and, only when you can´t anymore, chose this surgery.”
That day and especially thanks to him, I decided not only to live, but to live “well”.

Email: [email protected]