Hi, I’m just pickin’ for info here… Who has has had a decompression, then later been diagnosed with a cranial cervical instability and surgically fused? Did the fusion further relieve your symptoms? Make it worse? Thanks
Sorry, I don't have the answer to this question, but I'm also curious about the answer. I have recently been diagnosed with cervical instability.
When I had my first decompression in February of 2012, my dr was unable to remove the top vertebrae like they normally do for the decompression surgery. He said my neck bones were so loose that he would’ve had to fuse my neck right then. My symptoms returned and I was decompressed again in April of 2013. This time he also scraped my neck bones (not really sure what that means) but he was trying to save me from a fusion. My neck has been bothering me so much, I describe it as a pumpkin on a stick. He has wanted to put it off as long as possible, due to my age (I’m 33) and knowing the lack of mobility I will have for the rest of my life. Because of the pain, I couldn’t take it any longer. I had the fusion (c1 and c2)just over a week ago, July 15. I am in a cervical collar for 3 months and also a walker to get around because he used bone from my hip for the fusion. As of right now, I don’t have an answer if its relieved any symptoms. I decided before this surgery that I am going to file for disability. Being through 2 decompressions and now a fusion and who knows what else may come up.
Abc, you’ve been through the ringer. Thanks for sharing your story. Can I ask a couple more questions… What did your second decompression consist of? Was that to do a laminectomy on C1 and C2 or were there other things done? What doc performed your surgeries? I so hope this last fusion does the trick for you, you have been through so much you deserve to get some relief.
Thank you, jenn
Thank you for that info Abby. Do you have an instability? I’m asking about all of this because I do have EDS and continued pain after my decompression. I know that on plain x-ray my c spine does sublux (partial instability) at several places, so it makes sence to me that a cranio cervical instability should be ruled out. My surgeon is Heffez, have you heard of any Chiari pts having a cranial cervical fusion with him?
I should start my story from the beginning. In June of 2011 I injured my shoulder at work. I was put in a sling that I had to wear 40 hours a week while at work. I was in more pain that it was causing my neck than I was in my shoulder. I begged and begged repeatly to not have to wear the sling as it was causing more bad than good, I ended up wearing it for approx 6 weeks. In August of that same year, I started experiencing excrutiating pain on the left side of my face. I couldn’t drink, put makeup on or stand for anything to touch that side of my face. I was then diagnosed with trigeminal neuralgia and an MRI would later reveal the Chiari, which was causing my prblems, not the TN. I was turned away from U of M, they wanted to send me to a pain clinic. I finally found my lifesaver, Dr. Arturo Paz in Livonia, MI. He took one look and said you have Chiari, let’s fix this. I felt amazing after, all the facial pain was gone but I still had the issues with my neck. I had the 2nd decompression when the headaches and neck pain returned with force. The 2nd decompression just required removing more of the skull and scraping my neck bones. The 3rd surgery, the fusion, he fused together c1 and c2. My dr said I have a weird shaped skull and has spoken of me at conventions and is publishing my case, nothing to be proud of, I just want to be normal lol. Making the decision to try for social security disability was so hard for me, but I know I can’t work and kill myself fighting the pain everyday. I have 3 little ones who have been absolute angels. I often wonder if wearing that sling for 6 weeks and the constant pressure it put on my neck triggered everything. I did not have headaches or a lot of the problems that most with Chiari have dealt with their whole lives. My dr said not enough is known to prove that caused it. I have not been diagnosed with EDS, though I’ve been told by others because of the instability in my neck I should. How does one get a diagnoses, what kind of dr do you see for it? I’ve heard a EDS diagnoses would also help with filing for SSDI. Thank you Jen, it’s defiantly been rough 
Ask away any questions, if I can help I will surely do so 
Thank you and I will defiantly check into it. I just recently lost my health insurance at work but because I have children I was able to get medicaid. I just got approved a few days ago and so I’m waiting to get all the info in the mail, to see what doctors I can see and what they cover and such. This page has defiantly been such a blessing. I don’t what I would do without it, just wish I had found it when I was first diagnosed
(((Hugs to my fellow Chiarians)))
Angie
Angie, thanks! Getting an EDS diagnosis may be as easy as asking your surgeon. He saw first hand how weak your neck was, he may have diagnosed the EDS and just not said anything to you about it. Did your surgeon ever give you the Brighton Beighton test? It is used to determine if EDS is a factor. How has the fusion recovery been comparing to the decompression recoveries so far? I’m sure the SS disability was not an easy decision, but really that is what it’s there for. I that having it gives you some well deserved peace of mind.
Jenn
Jenn I didn’t even think about that! I will see him in about a week and ask. The fusion recovery has honestly been more brutal than the decompression surgeries. My hip actually hurt more than my neck and I couldn’t get comfortable in the bed, I spent most of my time recovering in the chair. For the first day i couldn’t even lift my leg. I was on morphine every 2 hours, right up until I checked out Thursday. The hip is feeling some better, but then you also have the stiffness from your neck being in a brace 24/7 for the next 3 months I uploaded some pics from the fusion, it looks a lot like the decompression surgery.
Thank you Abby for your kind words, this page has made a big difference in my life, just knowing I’m not alone