Published by ICSEB at 2 April, 2014
EMIL, 5 years old
Date of surgery: November 2012
Emil (born November 2008) fell ill in August 2010: he stopped walking; he was completely flaccid (his development had been normal before). The doctors did not know what was going on. They carried out different exams and reached the conclusion that he probably had myelitis. They had not seen anything worrying in the magnetic resonance images (only three years later a radiologist told us that there was a descent of the cerebellar tonsils of 7mm, which had been considered to be “normal”). Emil was recovering slowly. Two months later, he started to walk again, but with a limp. We went to see different doctors and they introduced different theories….They found that Emil was paralyzed in his the left side of his body. Since his return from hospital he has been rehabilitated. We repeated the resonance three months later. This time, the doctors observed the descent of the cerebellar tonsils to be 11mm and they suggested we approach a neurosurgeon. We went to Poznan to see a doctor, who a few minutes into the appointment indicated a decompression, based on head inclination that Emil supposedly had. Emil had a “partial sub-occipital decompression” in March 2011 in Poznan. Afterwards he started rehab at several centres, at home and with private rehabilitators…He fell over a lot when walking, he did not control bladder and bowel, his left hand was always closed in a fist (the ENoG showed that 60% of nerves were damaged), he would adopt a “chair” position when standing. The magnetic resonance was repeated in January 2012, it showed that the descent of the cerebellar was of 15mm and additionally three syringomyelic cavities had appeared. By August 2012 (in less than seven months), those three cavities had increased their diameter to the nearly the width of the spinal cord, and three new ones had appeared. A professor form Warsaw indicated a second craniectomy. We were terrified by how quickly the damage to our son’s head and spinal cord was appearing. And on top, after applying the only “treatment” method that we had been offered in Poland, the cavities within the spinal cord, that had not been there before, appeared. And now the doctors wanted to repeat the same surgery…Literally a few days before the scheduled decompression, we received information about the treatment in Barcelona. We quickly took a decision. We cancelled the surgery and scheduled the procedure in Spain (November 2012). Right after the surgery, we did not observe any dramatic changes. It seemed that the hand was looser, not as tight as before. Two weeks after our return to Poland, Emil’s state worsened substantively (once again my son was not able to walk); this lasted for about two weeks. Then the improvement started. Initially, he improved until reaching the state from before the surgery, and later he got even better. We went to see some doctors in Poland regarding the worsening’ cause. The neurologist told us that the surgery had neither helped nor done any harm, and so she understood that we had been “tricked”. She gave us a prescription for a new resonance. We went to hospital in April 2013. We told the doctors that Emil’s state was improving, but they did not believe us. The changes on the resonance were minimal. The resonance for comparison had been done three months before the surgery in Barcelona. For us, with common sense, this was a very good sign, as the changes had been progressing at an alarming rate before. The neurologists however told us to consult the neurosurgeon who had performed the craniectomy, in order to drain the cavities (which of course is a life-threatening procedure). In contrast, we contacted the neurosurgeon in Barcelona and consulted a radiologist from Poznan, who measured the cavities before and after the surgery. These consults calmed us down. Additionally, we observed some improvements ourselves – Emil was walking better; he was straighter when standing (he also received intensive rehabilitation). The following resonance was done in February 2014 (ten months after the last one). No change was observed. Emil is now in kindergarten and does activities like dance, judo, football, and swimming. He is just like his peers. He continues with rehabilitation. Not everything is perfect yet. Some problems with bladder and bowel control persist, but he does it much better than before; when he is naked you can see that not everything is well, but he functions like the other children in kindergarten (maybe he runs a bit slower). We went to see the neurologist in March 2014 who had told us the previous year that the surgery had not helped Emil. She now told us that he is much better (for example the Babinski sign disappeared). Thanks to the surgery and the rehabilitation, Emil does not cease to surprise me with his good state of health!
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