Carmen, Cord Traction Syndrome, Arnold Chiari I. Syringomyelia, Idiopathic Scoliosis

Published by ICSEB at 26 July, 2012

Surgery date: January 2011

My story is long and painful however I will share small details with you as my personal testimony. Apparently, I was born healthy and strong but at 8 years I began to have rare sensations as if I had received a strong hit in the chest, dizziness, sciatica, neck stiffness, severe headaches…

With 10 years the doctor thought everything would be fine after menstruation. But, my problems increased. With 14 years they realized that I had a tremendous scoliosis. With a lot of pain and tiredness I looked like a grandmother. At 23, after falling from small height, without any fracture, I atrophied my right hand and it paralized. Eight months later I was diagnosed with Chiari I malformation with syringomyelia at C2-T11/12 level. With 27 years I had suboccipital craniectomy surgery with duraplasty. Some symptoms disappeared after this like cramps that ran through my body as if I was receiving electric shocks. Other symptoms remained and over the years other symptoms appeared: intense pain in the fingers, lack of mobility in the upper limbs, lack of breathing capacity, hoarseness and dysphonia … I passed years as a patient in pain care unit. At the beginning of 2011 and after much investigating I decided to put my poor health in the hands of the Institut Chiari, Dr. Royo and his team. What a fortunate decision it was!

My levels of pain and strength have improved, and now I can sleep at night. After more than 40 years of illness I have found some peace. Although some injuries will always accompany me throughout my life and now it is not a torture. To all those who unfortunately are suffering from this disease, I request you to see the section of the filum terminale as the 1^st and the best option to stop the progression of their disease in time and to improve.

Some time ago, Dr. Royo operated my daughter also. Other doctors wanted to perform a craniectomy on her but couldn’t deceive me.

I’m sorry that I am not sharing more details about me but my work situation is not very clear and you will understand why I’m doing so.

If someone wants more information, you can contact me.

Cheers!