Published by ICSEB at 1 September, 2009
Date of intervention: September 2009
Since approximately 7 years, my throat feels tight and the impression of choke; as I often swallow my saliva through my respiratory tract, I constantly choke. Since approximately 3 years, this cough causes me a sensation of explosion in my head that do not last for long but are vary violent. Since the year 2005, I walk as if I was drunk, my head turns and I have trouble standing stable. I did not consult a doctor immediately thinking that this could be related with the stress and a strong tiredness and that it would disappear with time. Since the year 2007, I noticed my sight was failing at a raging speed and so I consulted a few times my ophthalmologist and finally he diagnosed me with Nystagmus in April 2009. Then, I had to have an MRI done and visit a neuro-ophtalmologist, who then suspected an Arnold Chiari Syndrome. My symptoms: Hick-ups, cough, chronic sinusitis, pins and needles and loss of sensitivity in my hands, loss of hair, loss of muscular mass, weight gain, frequent sighs, suffocation at the minimum effort, irregular intestinal transition, chronic fatigue, loss of voice, pain in my breasts, impossible concentrating, well summarizing it, I had a paralysis that was settling in at the level of my legs and hands. In Switzerland, the neurosurgeons suggested me the Craniectomy, a very invasive and dangerous surgery. On September 1st, 2009, I went and consulted the CHUV (Universitary Hospital Center of Vaudois) where they confirmed the Arnold Chiari I Syndrome with Myelopathy abd informed me of how urgent had to be this surgery.
Having investigated on this disease, a friend of mine found on Internet the “Institut Chiari de Barcelona”, Dr. Royo´s center: Dr. Royo has dedicated his professional career to this disease named Arnold Chiari and Syringomyelia making these the subject of his theses for the world wide treatment. He is totally against this surgery as a first option. Dr. Royo has an 87% rate of success with the recovery of symptoms, life quality and expectancy much superior than with the decompression. His technique consists in the section of the filum terminale: The filum terminale is a ligament that maintains the spinal cord united with the sacrum. This filum causes a tension in the spinal cord. If this tension is excessive, it can pull the spinal cord and the cerebellum, which is found at the opposite end and could then cause abnormal blood and cerebrospinal fluid circulation in the center of the spinal cord, which provokes the death of cells and nervous tissue ending up being a cyst. Sectioning the filum terminale, this permits the blood to flow normally to the spinal cord and to free the tension at the cerebellum level. By means of this surgery, its evolution is 100% stopped, eliminating the infrequent possible sudden death. At this moment, I called Dr. Royo on September 1st and received me on September 21st, 2009 at his office and programmed the surgery for the 22nd.
As soon as I got to the Institut Chiari, a neurosurgeon and a translator called Meriem received me; then, they evaluated my case together with Dr. Royo whom then confirmed my diagnosis. I was hospitalized on the in 22 nd in the CIMA clinic of Barcelona in a private room. The surgery went well, I woke up in my room around noon. Dr. Royo came to see me and tell that he had already stopped the progression of the disease at 100%. After 24 hours from the surgery, I felt my blood circulating through my hands and fingers; it is a strange sensation to live again and to be able to move them. I was able to go back to Lausanne, Switzerland by car on the 23rd. After a few weeks, my cough, my hiccup, my swallowing has eased, they have not totally disappeared but I have been able to notice more than 80% recovery. After 6 months from the intervention some symptoms remain present, the Nystagmus, the impression of being drunk when I walk, loss of balance, fatigue and problems in concentrating. Dr. Royo said that I needed to wait some years for certain recoveries, so what I need, is to be patient. I had a check up after 6 months from the surgery in the CHUV center where they do not recognize this intervention and highly suggest a craniectomy.
What makes me laugh is that when I consulted the doctors from the CHUV center in August 2009, they told me to have the craniectomy done because I risked staying in a wheel chair before the end of the year. Eight months later, I´m able to walk, so I do deeply advise all the people who suffer from Arnold Chiari Syndrome or from Syringomyelia toget in contact with Dr. Royo and his team. They will inform you about everything and will indicate the steps to take. Dr. Royo, I want to thank you for everything and I wish that the doctors around the world will someday recognize your technique. I thank all the Institut Chiari team, your warm welcoming, your support and your tips are really valued.
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