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Hi all im Claire from the UK, I’ve been a member for a while but have never posted. I was diagnosed at 20, but have not recieved any treatment due to numerous medical issues so the Doctors wouldn’t touch me. I’m now 28 and have finaly found a Neurosurgeon willing to operate but i don’t know what a craniovertebral decompression entails- I have trawled the Internet for this exact term yet only find similar. I would really appreciate your opinions please. Thank you in advance. Kind regards.

Clair, A “cranio” decompression just means the removal of some if the bony skull. A “vertebral” decompression is a removal of the posterior, or lamina of the vertebrae. I’m assuming the vertebrae your surgery would entail is #1 or down to #3. I’m so glad you found a surgeon to help you. There are some other UK members here who have expressed that they are having difficulty finding help. When is your surgery? How do you feel about it?


Hi Jenn, Thank you ever so much for your help I was extremely confused. Oh yes its dreadful trying to get help on the NHS in the UK. It is due to get a whole lot worse as the additional strain from the increasing foreign population with the European Union. Im awaiting my appointment, the Neurosurgeon said it will be months and months before i receive the date. I’m very scared but also excited to potentialy have my life back. How are you now you’ve had the surgery? Did you have what I’m awaiting and what was your recovery like? Kind regards. Claire.

Razzle51 that Link was fantastic thank you it’s really helped. Kind regards. Claire.

Yes, I had done what you have described, a skull and C1 decompression with a duraplasty and tonsillectomy. The surgery helped a great deal with all of my symptoms, headache being the worst. But I still have a headache problem due to what I believe is instability of my c-spine and possibly my cranio-cervical joint due to Ehlers Danlos Syndrome. I currently wear a cervical collar, and as long as I have it on the headache is very minimal. I am so happy I had the surgery, I would do it again without hesitation. I am much happier now. It’s taken the full 7 months to begin to feel like myself again, it’s a long haul but worth it. I so hope that your appointment comes fast and the surgery relieves you of the pain. I’m glad you are on this site. It helps to connect with others who truly understand what it means to live with this. All of the people on this site are special to me in a way that makes me proud to know all of you and love you too.