Published by ICSEB at 6 February, 2013
Surgery date: June 2012
It is unbelievable that this disease, even though it is not as rare as we think, is known so little, even by physicians. I am going to tell you my story; I will try to summarise 3 months in a few lines. One morning in the middle of March 2012 after lifting something heavy, I felt a pull that went up from in between the scapulas to the neck, nothing worrying, I just had a pull….it would go away! In fact, after some days there seemed to be some relief, but there was something odd, a burn that I had already felt on the neck and that over the days went up to the entire head. I started to realise that something strange was going on, what was that burning? That’s when I started to go and see my family doctor frequently, and I always got the same replies – it’s not bad, these are symptoms that don’t mean anything, you’re just stressed – I felt worse every week and noticed new sensations, tightness in the legs, in the arms, pins and needles in the hands, ringing in the ears….I had all kind of appointments, privately obviously, because my doctor didn’t believe that there was a need to dig deeper, it was just stress!
Nothing, nobody was able to explain what was happening of me until one day a neurologist, the third one, finally requested a resonance on which the cerebellar tonsils showed as low-lying, but also then: it’s nothing, you were born like this, you will live and die like this – without asking themselves why the tonsils were descended.
I decided to search the Internet, because I wanted to know more about those tonsils and I discovered that I had pathology, Arnold Chiari, that wasn’t al that innocuous, but all the opposite in fact!!! And indeed, I got increasingly worse. I found out that there was a specialist doctor in Spain, in Barcelona, and I called straight away and spoke with Mrs. Gioia Luè, who is part of Dr. Royo’s team. She very kindly explained to me and most importantly informed me about the fact that this disease can be stopped. Managing with the help of friends and relatives we succeeded in raising the funds for the procedure. I went in June, determined and sure of myself. When I arrived, I was examined carefully and they confirmed that I could go ahead with the operation, so that I was able to do within three days the examination, surgery and on the third day I was discharged and I was able to go back home.
And so, with a small incision at sacrum level, I was able to start my life over, at last I felt “saved”, I was already certain that all the symptoms that this disease triggered in me had been blocked, but things turned out to go even better. I was feeling increasingly better with each month, the symptoms and the discomforts decreased until disappearing!
Even on the last magnetic resonance that I had done for a check up it turned out that my tonsils ascended again, they went back to their place; this is proof for all those doctors who recommended not to have this procedure arguing that it does not work for Chiari , and for the same reason they also denied the refund of the surgery fees undergone in a foreign country.
To all who may read this testimonial I want to say: « Judge for yourself », as far as I am concerned I am very grateful to Dr. Royo and his team !
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