Published by ICSEB at 20 May, 2015
Date of surgery: November 2013
Hi all, my name is Emanuele. I’m 35 years old and live in Turin.
What I can say … since childhood I had many ups and downs on psychological as well as physical level. Just think that I was called “virus” in my family because each day I had a new problem! Luckily, I’ve always had a good physical structure, which has compensated many deficiencies that have affected me for years. My life was very good: I have been working as a plumber for 20 years and 7 years ago I made my my dream of having my own activity come true, every day and regularly I practiced martial arts and lived with my better half. Well, an enviable life!
On one Friday in May 2013, while doing a physical effort at work, like every day, I started having severe pain in the lower back. I thought it was a muscle pull and did not give it much importance. Then on Saturday, I went to class and after getting back home, besides the pain in the lower back, I also started to have severe pain in the neck and head. The latter accompanied me 24 hours a day until the surgery! I went to the doctor to try to quickly fix the problems at lower back and to be able to continue with my work and training. The doctor asked me to get a lumbosacral MRI and in June the hernias were discovered.
As the pain in the neck persisted, with throbbing headache, my partner insisted on returning to the doctor’s for further tests for the constant headaches, which were immune to any type of medication. With several difficulties, I achieved the referrals for a complete MRI of the skull and spine. It cost me a lot to get the MRI of the head, as my doctor was unwilling to grant me the referral.
On 12 July 2013 I received the diagnosis of Arnold Chiari type 1, with a descent of 18 mm of the cerebellar tonsils, multiple discopathy, obstruction in the rise of cerebrospinal fluid and two ischemic lesions. I was frightened right away. What was that monstrous disease? I started looking online and found the unclear explanation of the disease. Anyway, what I read was not reassuring at all. I continued my search through the web and the healthcare channel and unfortunately I had to ask for private consultations to shorten the waiting list, because the lists were very long. Meanwhile I continued getting worse … I had many more or less devastating symptoms.
I want to stress that I’ll skip the part of my experience with the Italian health system, the bad experience with the doctors who do not even know what they say or what they do, because nobody studies our pathology, but intend to improvise therapies and surgical treatments, which according to them are common and without risks, which in turn most often cause problems only when it does not reach very serious consequences. I just want to add that when you are collapsed, angry, alone and terrified by pain, you do not trust the first doctor who pretends that your illness is a simple thing (because it is not). As in any other profession, there are doctors also who do not know from where to start their work. One has to go to the bottom and you will see that you will find a ray of hope at the end of the tunnel, with the people who will welcome you with open arms, as it has been for me. You just have to be strong and strong willed.
Luckily, my search ended at the Institut Chiari de Barcelona, and with Rita and Angelo. I left my testimonial in a forum and received Angelo’s reply. He gave me Rita’s phone number. She explained her fight against the disease to me and described his improvements. Thanks to your help, my idea of going to Barcelona gained strength, and with the help of loved ones, I saved money for the surgery.
What to say: Thanks to all the team of the Institut Chiari de Barcelona, to Ms. Gioia, Dr. Mendez, Dr. Fiallos, etc … great and patient persons, and a thank Dr. Miguel B. Royo Salvador. He has given me hope and made it possible return to the life that I thought was no longer in my hand. Jose, my better half, thank you very much, Rita, Angelo, Francesca and many other people I’ve ever met. Without them it would have been difficult, but life places before us the people we need, you just have to look up and know how to recognize them.
Now, to help others going through what I went through, I am part of an association, AI.SAC.SI.SCO. Onlus, and I am a representative in my region.
To conclude, I encourage you to resist, because thanks to the efforts of a great doctor, scientist and researcher as Dr. Royo, we have a second chance to have a life with dignity. The disease will accompany us to death but, as they say, it does not matter what a person carries but its how he carries it makes the difference.
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