Published by ICSEB at 9 November, 2011
Date of surgery: May 2009
My name is Diego Tasca and I am a patient with a diagnosis of a rare disease called Arnold Chiari Syndrome (ACHI). I discovered all this in 2003, when I suffered a cardiorespiratory arrest. I was taken to the E.R. of Piove Di Sacco hospital, and, after a cardiopulmonary resuscitation, I was admitted and with all the tests diagnosed with this to me unknown illness with a strange name that frightened me, especially because of the adjective “rare”.
After being discharged from Piove di Sacco hospital, I took all the test results to Padua, to the neurosurgical unit, to see how to resolve or cure my problem, which wasn´t completely unknown after all, in spite of its rareness.
I made an appointment with the head of the neurosurgery department, Dr. R. S., as my GP had advised me. Once the appointment was set, I went there and put my case into the hands of Dr. S.; with me was my mother, who has accompanied me on my long road of agony (she was strong despite of her worries). The doctor started to talk very calmly, looking at the images and reports of the physicians from Piove di Sacco, until my fear to be suffering from something serious was eased a little. The doctor explained that it wasn´t anything serious and that it could be compared to an appendicitis, a small incision on the base of the neck would be enough, a same day surgery, just one night of hospitalization and then I would be discharged to go home (I promise that these are the exact words that he told me, they are engraved in my heart). He also made a small drawing on a piece of paper to explain to me of what the illness and the surgery consisted. He told me: ” Imagine, we don´t even cut your hair” – obviously that wasn´t my main concern, nevertheless it gave me courage. He told me that they would call me as soon as a spot would open up, I paid 190€ for the consult as it was private, a consult with Dr. S., the best of Padua´s neurosurgery, the social security did not cover that.
I went back o my normal life for a month and a half, then my mother phoned me: I had to come back home from work because the hospital had a spot for my surgery.
I arrived at home, packed a bag with the necessary for a short stay as I had been told and I went to the neurosurgical unit at Padua hospital.
I was admitted to the hospital on 16/07/2003 with history number XXXXX, they assigned me a bed while I was in standby for the day of the surgery. The next day I had all the tests done and signed the consents. Eight days went by before the surgery. On 24/07/2003 I underwent median suboccipital craniectomy, laminotomy C1 and duraplasty surgery, which is easy to write and pronounce, but I assure you that it isn´t easy to bare or to face.
After the surgery, which according to what Dr.S. said was next to nothing, I woke up in the ICU. Completely insensitive to any movements and intubated all around, I could only move the eyes (and I asked myself: wasn´t this supposed to be a simple procedure?).
I don´t know what exactly they did to me, nor how long the surgery lasted, when I woke up I couldn´t even distinguish any images, everything was blurry, I don´t know how many days I spent in the ICU, but enough to not believe in the words that Dr.S. said.
It´s very ugly to look at the ceiling of the room all day long with fearful eyes, I didn´t even know what day it was, or since when I was there, or what was happening to me, or if I would overcome it, these are the questions that I asked myself continuously, like swords piercing my mind.
After the stay in the ICU I went back on the ward and there I slowly started to understand, I promise you that the hospital stay was very difficult and painful.
I was still having high fever and intense pains, the incision wasn´t small as I expected, and it is still visible at the back of my head. I had needles and an instrument monitoring my vital signs connected to me all over my body, strange machines that lightened up and controlled the state of my health; I don´t know and will never really know what was done to me in that surgery, I know I have a plate in the skull, I think of plastic material, the rest isn´t really understandable, neither in the medical history. I only remember the pain and the regret because of the lie I was told in the consult before the surgery. I swear that I was brave only because I saw people with conditions worse than mine around me: tumours, angiomas, etc.
But I was wrong, because I still didn´t know of the seriousness of my illness; I remained in the hospital for thirteen days, I was discharged on the date 29/07/2003 and I went back home, very much affected and I wasn´t the same person as before anymore.
The convalescence at home lasted a long time, I can´t quantify the time exactly – but the pain I can: it was a lot.
I thought that that was normal after a surgery like this, and I tried to encourage myself every day.
The fever didn´t go down, it was very high and made my head explode; a sneeze seemed like an explosion in my brain, it drove me crazy, I prayed not to sneeze or vomit, those were two fatal actions.
I returned immediately to the hospital to the E.R., it wasn´t clear why the fever didn´t go down and it was thought of the risks or the contraindications of the surgery; rejection or an allergy to the type of material that the plate was made out of, it wasn´t clear, but on the contrary I understood very clearly their attempt to reopen my head to understand what was happening and to solve the problem.
I was already exhausted, morally and physically, I rendered myself to any kind of torture or cure, I just didn´t want to feel any more pain.
Then a doctor decided to try a drug-induced treatment and it worked, it hurt a lot and I felt light when they injected that drug through the instrument that I had plugged into my neck, but slowly I started feeling better; it seemed like the worst was over and with difficulty I went back to a life branded by pain, but normal.
In the following months I did the control tests, CT, brain MRI, etc; everything seemed fine, and that´s how it was. It was difficult to start over and forget, but during three years I recovered my physical and mental strength.
Then, one day, the health problems returned; through my GP I did many tests but everything turned out normal; the surgery apparently showed a good outcome, but in reality they just send me from one test to another without any results; they told me that it was a mental issue and insisted so much, that it became one in my eyes! They drove me crazy, but I was not crazy, it was them who didn´t know the pathology and its constant deterioration.
I took a friend´s advise who suggested to going to a clinic for people with depressive or other disorders; I was very depressed, I tried to take my own life twice, I felt lost, useless, a burden for my family.
I went to a check up with Dr. M and I told her my story, she decided to get me admitted to the clinic, I don´t even remember the exact date of when I entered the clinic, but I followed this friend´s advise and I did it.
From the first day on it was like being in a prison for me, with a lot of drugs that didn´t help at all, whilst my illness was always getting worse, and with it my mood, but at the same time I made an effort and I met good people who only needed to talk and externalise their pain, I made many friends; nevertheless I was still getting worse, I wasn´t a smoker, but in that place I became one, three packets a day, I felt like in a cage that took freedom a away from me, today I am still in touch with people who are grateful to me for having been at their side.
The doctor prescribed a treatment to follow at home and more psychiatric check ups; I went back home but my life was disturbed and the pain kept on increasing; in spite of this, I went back to work as if I was a different person, the drugs that I was taking changed my character and I wasn´t myself, I went on in my life with confidence, strength and the will-power.
I continued with the check ups and test until 2008, then the illness started to deteriorate my body; before I weighed 85 kg and I went to weighing 65kg loosing 20kg; the depression was part of me, I moved away from everything and everybody, my body started to have no sensitivity and to be semi paralysed on the left, I didn´t feel hot or cold and didn´t feel the wounds that I got working, I only noticed when I saw the blood.
I started to worry and explained it to the physician, who told me again that
it was a mental problem; I couldn´t stand it anymore, without knowing the pathology and that without being a doctor I went ahead and switched on the computer and searched for information.
Through the Internet the truth finally came to light: the illness was a rare pathology, that´s why the doctor´s didn´t know what to do; I finally found an institute in Spain, in Barcelona, that explained what the pathology was and that they could treat it at the Institut Chiari & Siringomielia & Escoliosis de Barcelona, I decided to contact them by email and this way my struggle for life began.
The Institute answered and asked me to send in all my information, in order to assess a possible consult with Dr. Miguel B. Royo, and to see whether the Sectioning of the Filum Terminale surgery should be carried out; at the same time I went to a neurosurgical outpatient department in Padua, and explained the problem and surgical treatment possibility in Spain to the physician, the medical opinion was negative, he didn´t know the illness and according to him no Italian doctor would have done such a, according to them, risky and useless surgery; I listened, but the only thing that interested me was to end the pain in any way; I had to try.
I travelled to Spain and arrived at the Institute, I met the doctor, who examined me; it wasn´t a mental problem, the illness had worsened very much, the doctor prescribed some tests at the CIMA clinic, and revealed that additionally to suffering from Arnold Chiari I some other very serious problems had appeared that conditioned the paralysis of the left side of the body: Syringomyelia, traction myelopathy, cervical lordosis, thoracic scoliosis. The doctor told me that the traction from the filum had caused 6 spinal disc herniations, 2 cervical, 2 thoracic and 2 lumbar, the “most problematic ones”. The doctor told me that the surgery would not rrepair all the damage that I had suffered, but that it would help; he decided to suggest the surgery, all from looking at the same images of I was told that they were fine in Italy; the illness had already progressed too much and causes many injuries, but I begged because I didn´t have anything left to loose.
I had the surgery that lasted 30 minutes, compared to three hours, as soon as I woke up I got out of bed in good spirits.
The control visit was set and I returned home; another pain but more strength; I came across sincere, honest and kind doctors a different world. A month went by and I went back for the control visit, more difficult expenses but I felt alive again thanks to Doctor Royo. I arrived in Spain, went to the check up and the doctor was surprised with the positive results of the surgery, I was pleased and he with me.
I explained to the doctor that I had mobility problems in my legs; he explained that the illness had nothing to do with this, but that this was due to the consequences of the traction from the filum, which had caused the lumbar disc herniation, which damaged the sciatic nerves, he explained that a specific test with an infiltration using needles and an x-ray instrument in order to confirm whether a rhyzolisis procedure should be done.
I am very thankful to Dr. Royo and his team for having returned hope to me, and a lot of strength for starting over, thank you for everything.
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