Neck and head problems after successful fusion of c1 and c2

psale92415, I hesitate to send you this link but hope it will encourage you to not to accept your situation as a "new life. " The nice thing about the link is that it outlines the troubles that can occur with C1-2 fusion. The not so nice thing is that it discourages patients from having this procedure. Don't focus on that part, but arrange to have several opinions from orthopedists regarding your surgery. I don't know if you've had reimaging, but you might consider the importance. https://centenoschultz.com/
Best wishes for your search. I think you'll find resolution.

thank you, I will check it out. I am pretty desperate for some kind of help. I also have RA and copd which is not helping

Your situation can be frustrating for sure. I agree with the idea of obtaining some additional and new diagnoses. I would also suggest seeing a neurosurgeon over an ortho...you already have an ortho's advice.

@psale92415 Have you thought about a physical therapist? It sounds like you have a lot of muscle spasms, hence the muscle relaxer prescriptions. A physical therapist can work on this without drugs. My physical therapist does a lot of myofascial release which releases the tight tension in the muscles that are creating the spasms and tightness. I find this very helpful.

Here is a discussion where you can learn more.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Jennifer

I was in the same situation about 20 years ago. Saw Dr Perra at the Twin Cities Spine Center, he recommended not to do the surgery because we would chasing damage down the spine as the joints below picked up the work of the ones we would have fused. He prescribed pain meds and said it would be best if we could control the pain that way. It seems my body has fairly well sorted it out without any surgical intervention. I tried physical therapy and chiropractic care. Physical therapy made the pain worse and chiropractic care would only last for a day or two. I am pretty much pain free except for occasionally I get a pinched nerve. That’s a pain you don’t want, and that’s when I resort to the pain meds and ice packs. I wish you the best.

PS, one thing that would bring some relief when I felt my muscles start to tighten up is a home traction device.

I suspect that you had a good surgeon because you had a year's relief. Now something has changed. May have nothing to do with the surgery, though may. Symptoms sound ( I say without medical degree, though with some experience) as though something is pressing against the ventral sack of the spinal cord. It may be an enlarged ligament or a disc either (perhaps) related to cervical instability.
Some places will look at your images at no cost. I would send them to centenoschultz as they offer the service. There is a doctor who does revision surgeries in Los Angeles Rasoulispine 320-421-0066. He's pretty amazing You may not be considering and probably don't need revision.
What you need is more information.
Good that you quit the meds, if the pain isn't too much to bear. I think they can make you passive and/or depressed.
I hope more people send you names of physicians.
Bless your search.

Had spinal fusion of c1 and 2. Did pretty good for first year. Started getting stiff neck and pain. Went back to surgeon and was told the surgery was fine and he sent me to physical therapy and referred me to neurologist. pandemic hit so had to stop PT and the neurologist just kept giving me muscle relaxers which were not helping, Every time I told him they did nothing he just gave me different ones.. Then I was sent for epidural shots by my rheumatologist who treats my RA but that did not work. Now I have same problem but have added pressure on top of head, dizziness, watery eyes and occasional sharp pains that don't last too long. Everyone tells me I have some nerve damage but I am really at a loss as to what to do. I also have copd which makes me cough and makes the head problem worse. Any thoughts?

@psale92415, I'm sorry to hear that things have not improved since you first posted in February here https://connect.mayoclinic.org/discussion/neck-and-head-problems/

You may also be interested in joining the discussions in the COPD support group https://connect.mayoclinic.org/group/copd-chronic-obstructive-pulmonary-disease/

I hope you saw the helpful replies that members made then. Have you been able to resume PT? Was it helping before you had to stop?

thank you. I will check out copd group. The pt was not helping before it was stopped. They just keep telling me it is nerve damage. Recently , I was prescribed duxepin which I read is used to treat depression and anxiety . Has anyone had any experience with this med being used for nerve damage?

This won’t help you but I thought maybe knowing others with same issues but took different steps. They have wanted to fuse C4to C7, I stayed on pain meds because of one question I asked. Will it stop my pain, 2 neuro surgeons both said no they could not say that. So I didn’t and what you’re going through is why. I am very sorry for what you’re going thru.