Caterina Ravelli. Arnold Chiari I Syndrome, Cervical Syringomyelia C3-D1, Cervical, dorsal and lumbar Scoliosis

Published by ICSEB at 17 April, 2007

Date of intervention: April 2007

Osio Sotto- Bergamo Italy- January 8th of 2009.
Testimonial of the section of the filum terminale.
I am a 48-year-old woman. Since my childhood I have suffered from headaches and once reaching adulthood, everything got worse.
In the year 2000 I started to cough, which caused the headaches that got worse, adding Cervicobraquialgia. I also had pain in my right arm and the medical visits did not give me any sufficient explanations.
This happened until October 2005, when Dr. xxx from the emergency service gave me a petition for an MRI to make sure there would not be any cervical hernias causing these pains and other problems that meanwhile had appeared, such as: depressive physical fatigue that increased taking only short walks; instead of feeling my legs I noticed two blocks of cement that did not collaborate; I tripped, I had a burning sensation, difficulty in walking on irregular surfaces, had loss of balance and vertigo; I often had things falling from my hands, as if the pressure or the force to hold things had to be an effort of concentration; my vision was sometimes blurry, with difficulty focusing and intolerance to a shining light; Paresthesias in the extremities, pins and needles and numbness. Problems swallowing, a sensation of suffocation, nocturne apnea, moderate but bothersome urinary incontinence, bowel movements produced discharges in my head and gave me a sensation that the sphincter muscules did not collaborate; if I got mad or cried, it gave me a horrible headache like a decompression and spasms in the head and cervicals; alteration in heat and cold, muscular spasms, occasional pain like electric discharges, decrease in sexual interest, gastro reflux and high pressure.
The result of the MRI showed I had a cervical herniated disc (C5-C6) but evidenced a Chiari I Syndrome with hydro- Cervical Syringomyelia (C3-D1). I went to a neurosurgeon of “Ospedali Riunity” of Bergamo. Doctor xxx, indicated the Occypito-Cervical Decompression surgery: they had to break the occipital bone, practice a Laminectomy of the first cervical vertebrate and surgery on the dura mater, which is one of the three strata of the menix. Before, I wanted another opinion and the neurosurgeon from the Insitute Besta of Milán, Professor xxx, told me practically the same: Sub occipital Craniectomy with dural plastia. I thought that if I didn´t go through this surgery I would risk becoming paralyzed, if I did go through it I could hope not to, but it was not sure that it would be possible to stop the negative pathological process… painful and risky intervention. I then spoke to a neurosurgeon, Dr. xxx, so he would have me “under control”, avoiding the intervention but he also strongly recommended that I go through the surgery, given that there was medullar damage.

Since then I lived with pain, with this sword of Democle and the sensation of having a bomb inside of me that could explode at any moment!
It is difficult to resign yourself and not have any hope. One tries to put the problem behind, while the pain and the discomfort affects you more everyday and you lie to yourself thinking that there is a reason for this suffering but you want to bang your head against the wall.
One night on the internet I read the testimonial of Angelo and Rita. She had surgery in Barcelona by Dr. Royo Salvador, for which his studies of the section of the filum terminale, the intervention for this syndrome, were recognized and approved by the professor of the faculty of Medicine of the Autonomous University of Barcelona.
It is a non-risk intervention because the section of the filum terminale is practiced in the coccyx area, without opening the dura mater (which is done, on the other hand, in practically any other place of the tethered cord, with the evident risks that can occur when touching the medulla/vertebrates). It is painless, it does not need intensive therapy, nor physiotherapy, like rehabilitation, to recover the coordination of the extremities.
In January 2007 I went to see Dr. Royo. He told me I had to have surgery because he thought if I stayed the way I was, I was in danger of serious neurological deterioration.
I went back to Italy and asked my social security the authorization for the section of the filum terminale abroad, and obtain the reimbursement. The person in charge of the Institute Besta of Milán, Dr.xxx, by order of the Lombardia region, had to decide my luck. He answered saying that this treatment could be done in Italy, which was not true because all of them had proposed only the decompression!
Besides, in the AISMAC forum (“Italian Association of Syringomyelia and Arnold Chiari”) by what Dr. xxx said about (“the Chiari Institute of New York”), it was understood that he was in contact with the Institute Besta of Milán when he affirmed that a neurosurgeon of the Besta had practiced filum terminale interventions; and right on this day 30.03.2007, dedicated to the Chiari Syndrome and Syringomyelia (during a course of professional formation) Dr. xxx made a reference to the ” Rationale of the section of the filum terminale”. So then I asked myself, in a country such as Italy, where the state decreets that the present temporary foreigners also have the right to urgent and/or essentail loans for health care, the same as the Italian citizens. Aren´t Italian citizens granted the same rights to be able to go to a foreign country to have important surgery done by an experienced doctor?
What´s going on? Maybe this rare illness does not interest anyone because it does not bring business to the farmaceutical companies, given that through pharmacology they cannot obtain any results? Why this rigidity in accepting that maybe another doctor may have found a less invasive solution, only because they are Spanish? But, aren´t Italy and Spain both part of Europe? Or am I wrong? It seems to me as if we have gone back to the Copernicus generation with this rigidity. I understand that they refuse the removal of the herniated cervical disc in Spain, but not an operation which is less invasive and painless!
It has been 30 years now that I work in a hospital and I see positive and negative things. To guarantee an adequate service to the demands of citizens, one must not forget to show more respect and more attention to suffering; the freedom of choice and self determination are also part of the dignity in which one is allowed to live with their disease, so that the person is still among the values of coexistence. Often, the media gives superficial evidence of values and rights, almost in stylish terms, through headlines and entertainment.
It almost seems that they don´t want a better health system but don´t even believe in public health.
In conclusion, I, Caterina Ravelli, the 17th April of 2007, went to Barcelona so that Dr. Royo could perform surgery on me. After the operation, Dr. Royo told me that I had a thick and taut filum terminale, and the next day, at the visit before leaving the clinic, I had no more signs of Babinski and 80% of the tingling in the hands had disappeared; and after years I once more discovered what it meant to be able to touch the neck and right shoulder and to notice heat under the skin and flesh, in contrast to the block of ice that had caused pain, even brushing against something, I was able to go to the bathroom without a headache and the urinary incontinence disappeared.
In the afternoon, after leaving the clinic, I took a quiet walk, without noticing the blocks of cement instead of legs, with, instead of fingers, sausages punctured with needles, two numb extremities with warm toes…. I felt ALIVE!
I returned home with a plaster on my bottom, and, I dare to say, with the feeling of a normal life for me! Dr. Royo affirms that the majority of the symptoms are due to the irreversible damage to the nervous tissue and this cannot be replaced, however, substitute circuits for the lost ones can be achieved, and there are some cells or connections that have stopped functioning but haven´t died, and that they can be restored by recovering the blood circulation, improving some symptoms.
The sooner the spine stops suffering, the better the prognosis will be.

Time will be needed to recover the rest, but already the sensation of not having a nail stuck behind the ear, but only a sensation of numbness, is not only sufficient, but a lot for me.

I realize, that the sooner the surgery is performed, the sooner you recover. I know this is obvious. But then why don´t those who live this drama know that there is an alternative option to decompression?

Luckily, I found this possibility through the Internet and I am getting to know the others that have been operated on by Dr. Royo. I would like my country to consider me part of it, admitting to me and to others that this choice is our right, that this rare disease is talked about, and about this great opportunity. So that other people who live this painful drama don´t feel alone and abandoned, but with the possibility of solutions which aren´t painful or miraculous, but simply feasible.

The surgery was brief and I didn´t need rehabilitation, and one year later the control MRI showed the reduction of the siringomielia and the Dr.XX ( neuroradiologist of the “Ospedali Riuniti” of Bergamo) was astounded by the surgical technique and the positive results. The visit to the neurologist Dr. XX was also positive for after considerate clinical and radiological evaluations, he confirmed the usefulness of the chosen surgery.

Now I no longer have to ´scratch” the right side of the tongue, while before I had a daily headache and shoulder ache, now I feel like before after having taken many analgesics. After years, I can finally cough repeatedly and my head doesn´t “explode” anymore, getting to the point that everything was black for endless seconds, I can unscrew bottle tops and open cans. Even if I didn´t have other benefits, everything that I have obtained until now has been a great gift for me!

Thank you Dr. Miguel B. Royo for having broken Damocles sword!

Caterina Ravelli
E-mail: [email protected]