Published by ICSEB at 21 February, 2013
Date of surgery: May 2011
My name is Michaela, I’m 22 years old and I live in a small village of Calabria in Italy.
I am writing these few lines with the hope to help all those people like me who are affected by Arnold Chiari Syndrome Type 1.
Since childhood I had been suffering from headaches and sometimes these headaches didn’t allow me to live peacefully. Since then, my parents tried to understand their cause, by doing several tests: X-rays of the skull, ophthalmologic check-up, routine tests. Everything appeared normal. However, the headaches were still there until I got used to living with them. After some time I did the X-ray again because my mother was not convinced at all, and now I can say that she was totally right.
The result of the X-ray was also negative. Time went by and 4 years ago, I started having strange symptoms: tiredness, weakness, rare electric discharges that affected my limbs, constant tingling, very intense back pain and strong tension in head and neck region. Initially, I thought that this disability was due to the sedentary life that I was leading. I had always practiced sports and I realized that when I stopped, the symptoms increased. With time, I understood this could not be the reason.
One day, like any other day, I was lying on the sofa, I was complaining of severe pain at the level of the limbs, back and tiredness that sometimes did not allow me to get up, then at one point my right arm was blocked. I could not move at all, then with the left hand, I tried to support it gradually and put it on my leg. I knew my body perfectly, and it was very clear that something was wrong.
My mother decided to talk about it with a family friend, a special doctor, this is how I define her. After some time she asked me to do a MRI in which the malformation of Arnold Chiari type I was diagnosed.
It is useless to explain how scared I was at that time. I was not in control of myself.
I started to lose weight, the tiredness increased, I couldn’t eat, at times I was able to keep the food inside my mouth for 10 minutes without being able to swallow it. My back and neck didn’t let me live peacefully. I was not able to keep straight and my neck had to be inclined forward.
After a year I did the MRIs once again and the situation had worsened. The syringomyelia cavity had increased. Only a surgical procedure could help me at that time. Clearly, at such a young age, I did not have the intention to undergo a craniectomy, given that it was invasive and only thinking about it used to make me feel bad.
Then my special doctor started to investigate a bit and this is how we found Dr. Royo.
Once we knew about the existence of this Doctor, I connected to his web and started to investigate. I read and reread hundreds of testimonials, everything was so simple and every time I could relate more to the suffering to these people.
I do not deny that initially I was a bit skeptic. Everything seemed to be very simple, but despite this I decided to call. I exposed my situation to Dottoressa Luè, who proved to be available and friendly from the very first moment and invited me to send her my MRIs. In a few days I got the pleasant news: he could undergo minimally invasive surgery, the Dr. Royo’s Sectioning of Filum Terminale.
I came to Barcelona and had the medical check-up and the next day I was operated. I returned to Italy with lots of strength and a completely new life. Many symptoms went away just after a few hours of surgery, and over time many others disappeared altogether. The strength in arms and legs returned. I am aware that the disease is with me, but at the same time, I know that it will not give me problems. I am confident and, although sometimes few symptoms reappeared, I know that everything was fine. I cannot do another thing than to thank my doctor, who understood the problem from the beginning and was on my side, Dr. Royo and Dottoressa Luè, who have given back my smile, and obviously my family that has been by my side and has given me the opportunity to choose this path. A special thanks to Rosanna Biagiotti, who has been by my side with great patience and sweetness and helped me to cope with this situation.
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