Leonardo Coutinho, Neuro-Cranio-Vertebral Syndrome with a Descent of the Cerebellar Tonsils.

Published by ICSEB at 26 May, 2017

Surgery date: July 2015

My son started to have symptoms at the age of three. We saw different paediatricians and neurologists and they ordered magnetic resonance scans of the skull and brain. Nothing indicated the diagnosis. He was treated as a boy with headaches and asthma, but there was something that told that that was not it.

He continued to play and run, but he complained of pain in the neck and breathing difficulties. His complaints started to intensify and became more frequent until one day, at the age of five and while he was playing tag with his cousins, he came up to me and could hardly breath. Even though we were at a part y, we went back home to fetch his inhaler and it was then that he fainted. That moment I thought I had lost my son. Something told me that he did not have asthma, I know very well what it is like (I am asthmatic), and he did not have migraines either.

I requested a new MRI scan the next day. The neurologist asked us to consult a neurosurgeon urgently. When the day of he consultation arrived, the neurosurgeon recommended to do a decompression surgery as soon as possible. Back then, my son could not even smile, because the effort of trying to do so caused breathing difficulties and every time we had to rush to the hospital. The lack of air can be explained by a compression of the medulla oblongata, responsible for breathing. His medulla oblongata was being pressured quite a lot by his cerebellar tonsils.

He underwent surgery on 5 June 2013. The post-op was very difficult: Leonardo had a lot of pain, he was throwing up a lot and he had to be taking tramadol all the time. He was in the ICU during four days, and discharged from hospital two days later. He was not even able to lift his head for more or less two weeks. It hurt so much. The recovery was very difficult.

The first nine months after the surgery, he was doing well. Afterwards, he started to have the same symptoms once again, but the headaches were now daily and accompanied by nauseas and vomiting.

We saw the neurosurgeon again, who advised to have a new surgery, this time, a more aggressive one. We did not want him to have it, on top of the involved serious risks, the physicians wanted to place to plates in the cervical area reducing the mobility of his neck by 40%. He would have to live like he was wearing a cervical collar for all of his life.

In July 2015, we went to Barcelona. There, other than Chiari, they diagnosed a starting Syringomyelia. They performed surgery on 16 July and he was discharged from the hospital on the next day. Leonardo was not in a lot of pain, only in the area of the surgery. He did not vomit nor did he have headaches. On day five post-op, we were already visiting different of Barcelona’s tourist attractions. We travelled on the subway during the whole day and he never complained.

Leonardo is currently leading a normal life: he plays, runs and trains at a football school without respiratory difficulties. He rarely has headaches and the sensitivity has returned to his feet. His voice, which used to be nasal, has improved, and he rarely complains of backaches.

He is more motivated and ready to go to school, even though before he did not want to go not even on a reduced timetable (he used to start at 13:00 and finish at 15:00 o’clock).

I can confirm that he has suffered very few pain episodes since he underwent surgery in Barcelona. I admit that in the beginning I was scared to take him to Barcelona, because I did not know any physician who recommended this surgery, but I went over there thanks to the testimonials of Brazilian patients who had undergone the procedure.

The surgery was certainly beneficial for my son and this is why I recommend it to everyone suffering from Chiari and Syringomyelia.

Feel free to contact me for further information.

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