Hey guys, just wondering if anyone here has/had craniocervical instability and has had surgery for it. Dr Hepworth told me that this may be my problem aside from eagles and I’m just curious if anyone had the CCI fusion surgery.
No surgery for me but I have had prolotherapy injections which have helped.
Do you have EDS? I’ve been told it usually is less likely to work on EDS patients
Do you have EDS tho? It seems like youre interested in going down the multiple surgery route and let me tell you, its a dangerous road. If the styloid surgery didn’t help its probably because that wasn’t the issue. Bu that doesn’t mean CCI is. Moreover, that surgery is way more intense and unforgiving and imagine if you had that for no reason too
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It’s hard to know if @hyperrichard’s ES surgery didn’t help as he’s only had one styloid removed & has bilateral ES. Symptoms can & do crossover in some cases. I definitely had crossover pain from my remaining styloid after my first one was removed. Had I not known this problem exists, I could have easily thought my first surgery was a failure. It wasn’t until my second surgery that I almost fully recovered from my ES symptoms.
@nolan, I appreciate your caution. All surgeries in the neck/skull areas are dangerous because of the possibility of serious nerve or vascular injury. I think the choice to have any surgery must be made carefully. For some, choosing to have a risky surgery can mean a chance to live a more normal life vs a very limited one so they feel taking a chance is worthwhile.
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I 10000% have EDS. I have been diagnosed by a pain specialist, a orthopedic surgeon and a geneticist who specializes in EDS. If my pain doesint get better in my neck there isn’t much more I can do except get the fusion around c2.
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I’m going to go through with removing the left one on August 15th. Still pretty skeptical but I am going to go through with it and hope I do find some relief.
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Thank you for the update, @hyperichard. I’m so sorry for your confirmed EDS diagnosis & the potential need for cervical fusion. It’s worth it though if it will really help you.
Hope that the 2nd surgery does help you & you can avoid the fusion 
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I am having a consult for that very soon and have had both styloids removed.
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You’ve had a really tough time & such a long journey @JustBreathe, I hope this next surgery helps…thinking of you, hugs & prayers 
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IM heading that direction myself also JustBreathe after both styloids removed (I do have EDS) however I have come to the conclusion at my age (66) the fusion might not be ideal for me. I hear you can no longer drive a car after fusion. Im not ready to give that up. I went thru a decade of prolotherapy and got short term help from it but long term,not. I think I have tried just about all possible treatments known to man along the way. I had two whiplash accidents in my late teens and early twenties which did not help as I was already prone to the hypermobile neck. I wonder if I hadn’t had those early whiplash accidents I would be in better shape even with the EDS. My docs now suspect Bow-Hunters Syndrome…(compression with rotation) .in process of evaluation.
Doing a fusion is a big step, usually one of last resort for patients with CCI. One must weight all the pros and cons before doing. Recovery would be a challenge and take some time. Like many of us, it can depend on our pain levels. I got to a point with Eagles, I couldn’t tolerate the pain anymore and wiling to do any surgery to make that pain go away.
@hyperichard Hyper, all you can do is move forward, do the surgery and see where you end up next. I hope you get some good results from the next surgery. If you continue to have neck issues, at least you know, its not Eagles and the styloids will be gone. Its a process of elimination.
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Hi again @Snapple2020 it has been a long time! I am sorry to hear you are in a similar situation. Not sure where you heard not being legally able to drive after a fusion. I have not found anything that supports that and there are plenty of other disabilities that are way more limiting that don’t restrict driving. Think of all the elderly people who have lost their rotation and are still driving with more impairment! Just being in a moving car as a passenger is a risk 
As you said it all comes down to deciding what you can live with for your quality of life and no one can decide that but you. BHS is a high risk issue in itself if left untreated.
Thanks @Jules , you are always so supportive and helpful ! I never could have guessed the layers of this all for me. I understand the objective logic of each piece and it all had to happen as it did. I couldn’t be more grateful for my medical team to wade through the complicated journey, they never gave up on me! This CCI surgery is hefty but I am grateful to have the next step to improve my quality of life!
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JustBreath, yes the past year been a struggle trying to work in less than ideal work environments on top of increasing medical issues. Being on computer aggravates my neck so I havent been on as much here. I finally decided to semi-retire and give up on a regular job. Today is a good day, so we will see how long I can last. LOL.
Ive only learned a week about possible bow hunters but have known about unstable neck for decades. I read somewhere in my deep dive internet research about the driving issue so I am glad to hear that is not always the case. I guess it might depend on type of fusion and limitations? you are right about the elderly people out there driving. 
I will be curious to follow your path and learn as I may be likely behind you. Good to connect again.
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glad you got it confirmed
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As you’re able @JustBreathe, please keep us updated as to what you learn about the CCI surgery. I, too, am sorry this has been a long process for you w/ so many twists & turns. I will be praying for you to find the best possible doctor to help you in this next phase of your recovery.
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Will do!You have been a special blessing to our forum, @JustBreathe. I’m so glad I’ve been able to encourage you! 
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Hi, I just had spinal fusion C1/C2 for instability in England. I do not have EDS. Cause was head trauma I believe. Before considering fusion try Atlas Orthagonal or NUCCA corrections as may help without surgery. Sadly most practitioners in USA & Canada, very few elsewhere. Is online registry. But be careful who you see. It helped me for 3/4 yrs, then had to go for surgery. Good luck. D
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I’ve actually had NUCCA and it didn’t help ): but that was with both styloids in, so maybe once they out it’ll be different? I had 15 sessions for 1500$
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