Need advice for my 13 yr old .. About neck fusion surgery.. Please!

Please Help.. My daughter april has had 4 major brain surgeries in the past yr due to her Chiari and now her bones in her neck are forming like a "S" , Neuro-surgeon says she is going to need neck fusion and i was wondering if anyone has ever had this ? Im sure some have but the way it was described was worrysome to us. Her father dosent want it done but I know she needs it.. the doctor has said 3 times now she may need it and this time he said she will have to have it.. Please give me advice on anything.. Thanks. Deb :)

Deb, I’m sorry your daughter and family are going through this. I had skull to c-2 fused and also warned I may the rest of my neck fused too, I have EDS and my neck is unstable and has DDD. I have also developed scoliosis, but in my T spine, not my neck. I know there are many others in that same boat and who have the full fusion done. Does your daughter have a Hypermobility disorder like EDS? Another bone issue? What has her doctor said about leaving it, what would happen? If it were me in her shoes I would want the surgery- worsening neck scoli is more rare can cause a lot of pain and dysfunction, and unless it can prevented from worsening it sounds appropriate to fuse it. I’m sorry you are facing the decision for another surgery and I don’t envy being a parent in your situation. Sometimes people need more information before they can get on board with something like this…do you have the time, with your daughters situation, to wait while you research and get more info?

:slight_smile: jenn


April has EDS and is having more tests run monday and tuesday this week to see how her bones move, so we will know more about it then. Her surgeon has basicly saved her life, before her first surgery she was 2 days away from passing. He said if this isnt done pretty soon she will be paralized. As soon as the test results come back then we will know how our time line is for the surgery it may have to be done as soon as the holidays are over. After her second surgery he said we may need to do Fusion but it depended on how her future MRI's looked and just in 5 months it has progressed badly.. Thank you for your advise on this..

Deb :)

Deb, in my experience and reading about hundreds of others’ with NSs, we are more often turned away from surgeries, so if an NS says to you this is important to fuse I would be trusting of that. From what you’ve said it sounds this guy has true understanding of your daughter’s physiology and knows what she needs. I will send some prayers out to your family and please keep us up to date with her.

Hugs Jenn