Enara Gorbeña. Arnold Chiari I Syndrome, Syringomyelia and Idiopathic Scoliosis

Published by ICSEB at 14 July, 2007

Date of intervention: July 2007

Hello my name is Enara Gorbeña, I am 21 years old and suffer from Arnold Chiari I, Syringomyelia and Scoliosis.

My problems started when I was eight, when they diagnosed me with a 26 degree Scoliosis that they pretended to correct using an orthopedic brace and persistent swimming.

When I was fifteen, after seven years using the brace for 23 hours per day (I only took it off during the hour of swimming), the Scoliosis had progressed unexpectedly. This motivated me to see a famous traumatologist, who diagnosed me the existence of a Syringomyelic cyst from the origin of the Scoliosis and sent me to the neurologic specialists.

Once they diagnosed correctly by the public health department and confirmed properly by another prestigious private entity and by different consensus criteria from all the consulted specialists, I proceeded to put myself through a Meningoplastia with a sub-occipital craniotomy at 15 years of age.

I was hoping that this surgery I suffered would be the definite solution to a problem that had ruined my childhood. However, far from reality, unfortunately, the cyst continues without experiencing any kind of change and the Scoliosis progresses at an unstoppable pace just how the traumatologist had informed me last year. For this situation, his inicial proposal was to go through the intervention to straighten up the column and even though after the pertinent consultation with neurosurgery we descarted this possibility given the elevated risk of tetraplegia. In this unending street, when I was looking on internet, I found the web page of the “Instituto Neurologico” and I entered the patient´s forum. A young patient with the same case as mine, thanks to her I discovered Doctor Royo´s knowledge and his technique.

Finally I went through the section of the filum terminale last summer and the experience has been totally satisfactory.

Although I still cannot comment on any improvements until time passes by and I get a new Scoliogram and MRIs done. I cannot stop thinking about how I could have avoided the previous traumatic surgery.

I would like to transmit to all the people who consult this forum, the huge hope it has given me discovering Dr. Royo´s technique and being the first time they comment me about a future with no risks, injuries or physical limitations for the rest of my life.

If you wish more information please do not hesitate in emailing me at
[email protected]

Warm greetings.