@ahommer When C1 & C2 are twisted or rotated, it can bring on vertigo. That is what happened to me, and when my PT realigned those vertebrae (gently), the vertigo stopped until the next spasm moved things and started it up again. I actually fell backward when I looked upward at a time when my C1 & C2 were skewed. There is also a condition called Bow Hunter's Syndrome where C1 & C2 stay turned to one side. Muscle spasms will happen if you have a spine issue because your body is trying to protect the injured area.

When you seek out a specialist, go to the very best. You have already been stumping your doctors and that just turns into a parade of spine surgeons that may run away from a complex case because they don't understand it or don't want to fail and have that on their record, so pick the most intelligent and "recognized in their field" surgeon that you can find. I looked at where they trained, read their research papers, and for how they excelled with scholarships and awards because I wanted a surgeon at the top of his game who loved his job, and I found him. When you read their literature, you find out what cases interest them and you need to be a good fit for what they like to do. I had 5 spine surgeons refuse to help me and the only surgeon who understood my case was Dr. Fogelson at Mayo. I asked him why he wanted to be a neurosurgeon and his answer was because it is hard and is challenging and he enjoys solving difficult problems. That is the kind of surgeon that you want. I wish I had started there first instead of wasting 2 years trying to find help with doctors who didn't want me as a patient. I am the patient who found my own diagnosis in medical literature and I found what 5 spine surgeons missed. When I asked for an appointment at Mayo, I sent that literature in with my request. You can do the same thing with the extensive article about thoracic outlet syndrome and how it relates to your symptoms. Make sure you phrase it as a question asking if your case may be like this literature has described. It is the doctor's job to make the diagnosis, and make sure you are not telling him how to do his job.

If your neurologist did not suggest TOS as a possibility, they should have because it is something they should know about, but many doctors miss it. I was tested at Mayo to reconfirm that diagnosis with tiny blood pressure cuffs on my fingers as they raised my arm and turned my head and they got a measure of how the blood pressure changes. I had a consult with a thoracic surgeon who consulted my neurosurgeon while I was at the appointment. That is what is so good about Mayo. It is a team effort among all your doctors. Mayo has many spine surgeons with various sub-specialties.

If you want to try to be seen at Mayo, you may want to call and see if your health insurance is in network as a first step, then use this link to contact them. http://mayocl.in/1mtmR63

They will arrange for you to send in your imaging and records for review and you can request them to be sent to a particular surgeon if you wish. I did that because my type of symptoms that were also described in medical literature as "a rare presentation of symptoms", were mentioned in another paper co authored by Dr. Fogelson. I knew that he would know about a case like mine. Up until that point, I had been given many wrong answers by other surgeons.

Is there anything else I can answer for you? What is your next step?