It is going very well. Zjuul is still headache free! And that's incredibly nice for him and still incredible for us.
We were always told by the Dutch doctors and professors that it was an inexplicable headache and that he had to learn to live with it. We are so happy that Zjuul doesn't have to learn to live with it! We are very grateful to all donors and people who have helped Zjuul in any way whatsoever ...
But what has actually been done? I was hoping I would have an X-ray to show, but it's still missing, but coming.
First, Zjuul got the Halo on October 23 to see if a cervical spine fusion would help for his headache. This was mainly because a fusion of the cervical vertebrae is not a minor operation and the consequences are for the rest of his life. With the Halo, Zjuul's neck and head have been put in the right position. The EDS has slackened the ligaments of his neck and there was instability of his cervical vertebrae. This caused his skull to sag over his neck.
With the Halo, his neck and head have been brought to the normal position. It was immediately clear that the Halo was helping Zjuul. He woke up from anesthesia without a headache. He was, however, very nauseous. That was probably because his brain had to get used to the new place. Zjuul still had a headache with exertion which would be resolved with the decompression operation. Because the Halo helped so well and the Corona numbers continued to rise in Barcelona, they proceeded to surgery more quickly.
Zjuul was operated on October 29. A decompression has been done. Then an edge of the skull is removed to give the cerebellum space. So that the brain fluid can flow freely again, it was now blocked by the cerebellum. And has had a merger of C0-C2. This means that vertebra 1 (C1) and vertebra 2 (C2) are attached to the skull (C0). This is secured with pins, screws and donor bone. The pins and screws already provide a stable connection, but the donor bone will ensure that it will soon be a sturdy block.
Due to the merger, Zjuul has about 50-60% less mobility of the neck and will therefore need lifelong adjustments, for example at school. Everything has to be at eye level because he can no longer bend his head far down, so a table with an oblique top. He can no longer swim normally and will have to learn a new technique for this. If something happens next to him, he will have to turn his whole body instead of just his head. Those are things he has to get used to.
Zjuul woke up very well and without pain. Which is very special because this is a very heavy and painful operation. And it kept going well! We had to prepare for 4 days of horror with a lot of pain and discomfort. But he was spared that. By October 31, he was already sitting next to his bed and had already walked a few steps. More was not allowed yet, but he certainly could. The doctors were amazed at his great recovery and that he was pain free. The medicines could therefore be quickly phased out. And Zjuul soon wanted to go back to the apartment.
Finally we were allowed to return to the apartment on November 3. Without painkillers! November 6 we had to go back for a check-up and Zjuul got his fit-to-fly statement. In the meantime, the desire to go home was already so great that we arranged a ticket for the next day and we arrived back in the Netherlands on November 7 in the evening! Nice weather in your own environment and the family complete again.
3-4 weeks after the operation, we hope that Zjuul will gradually be able to pick up school again online via Klassecontact. He is not allowed to go to school for 3 months now because the bone must first grow properly. He also has to wear his collar for another 6 months. Rehabilitation is about 6 months to 2 years.
English 
Dutch