Occipital Cervical Fusion (T-2): anyone have this fusion?

@pjdiggs. So sorry you're experiencing such pain relative to your 15+ year ago surgery. One thing I've learned along the way - with spine surgery - one should expect almost any sort of outcome! You would think the docs might be a little more understanding of your discomfort...

A little over a year ago I learned of a specialty I'd not heard of before: physiatrist. Essentially, a pain management doctor. In my case, it was the physiatrist who delivered the most useful diagnosis which lead to corrective surgeries.

Have you consulted with a physiatrist?

I've been to 5 different pain management offices, other than throw drugs at me, which doesn't help this issue and the injection they tried, never helped, if anything with that injection it flared the muscles up. The pain from that injection was excruciating. I also went to physical therapy for vestibular therapy. I got so dizzy from the massage they did at the base of my skull, I couldn't leave until I could see straight. For years I got tired of doctors thinking I was drug seeking. I wasn't I was already on dilaudid (which I was taking for end stage degenerative disease in my feet) , and tranquilizers which I had at home. I didn't need drugs from them. Nowadays, I am using marijuanna for flare ups, with only 30 to 45 minutes relief, long enough to make dinner or do something else that needs to be done.And I don't use it every day.
That's why I'm on this site.I'm hoping someone had the same surgery and by miracle, find a doc that wants to listen, and actually touch you.

My first thought is have you gone to an ENT consultation or with a neurologist? This may have absolutely nothing to do with past surgery or could be an adjacent issue. There is a major nerve in your face called the trigeminal nerve that branches across the face and can affect everything from balance to headaches and much more in between. I am not specifically referring to trigeminal neuralgia (which will automatically come up when you search this nerve). There are other head and skull nerves as well. It could be you're focusing on your surgery to find the keys to unlocking what is wrong. My intent here is to open the discussion beyond an orthopedic topic. In your shoes, I would go to a neurologist or at least an ENT.

Before my spine fusion I was having double vision if I looked in my rear view mirror .My left eye would get stuck when looking from left to right. You could see it happening. And I always had the feeling of floating dizziness above my head when I moved it the wrong way. I went to an eye specialist. My problem might be the way I explain my discomfort,I don't know. But the eye getting caught then snapping into the direction I was looking was obvious. That was in 1982. They did a CT scan. And at the visit,the DR, Dr.Beinfang, yup that was his name, couldn't find anything. But in 1983, we learned the arthritis in my TMJ had been so bad that my lower mandibular had slid up in back of my upper mandibular and my bite was so open I couldn't bite into a sandwich.I had to push the sandwich with my thumbs up into my upper teeth to take a bite.I ended up having a surgery where I was wired shut for 8 weeks, but the surgeon used my own bone for the fusion so it didn't heal. Dr.Kaban told me he had done 500 of these surgeries up to that point and I was only the second one that didn't heel. I had to have it done again a year later with bone from the bone bank. Now whether or not that jaw slippage had something to do with the eye weirdness ,I don't know.
But to answer your question I haven't been to a neurologist for this. But I see my PCP tomorrow to try and get an MRI and she had suggested a neurologist.
And you know who first told me about the Trigeminal nerve was an eye doctor.He showed me where it was on my face.
Thank you

What I'm hoping to find here is someone that had this occiput - T anything fusion and see if I'm not alone in my symptoms. Compare symptoms, or have someone say I get that too, and my doctor helps with treatments. what treatments? WIll they help me? Or am I just nuts? And maybe I won't feel so crazy.. The docs don't believe me when I tell them my symptoms and it's very frustrating. You'd think after they learn my history they'd have a little more compassion. I've had JRA since I was 7.

Interestingly my husband also had a jaw misalignment and went through a similar surgery. That was a very difficult recovery and my heart goes out to you for having to deal with it twice. Let us know how your appointment with your PCP and referral goes Warm wishes