Connect
← Return to Occipital Neuralgia
Discussion
Comment receiving replies
Hello and thank you for your reply. I saw a cervical spine doctor... ( who gave me very little time, basically a quick glance at my MRI) He said I should have a nerve ablation, because of the pain in the back of my head. The pain guy was not confident that it would help me, but thought it may be worth a try. I have two problems, although I believe they are related to each other. My first experience was 5 years ago, with teeth aching and face pain. It lasted for about 8 months and went away. But I also had headaches which I did not associate with the face pain. I have had several bouts of this and the last started in July of 2021 and progressed to the back of my head having pain, not even a pillow could touch it. ( Occipital neuralgia) most of the pain is on my right side, I cannot lay on my right side, but even laying on my left side causes my right side to hurt. Now, I'm also starting to "trigger" pain by hard chewing or cold food... so I now avoid chewing food on the right side. It's horrible.. I don't sleep well.. I did see THREE different neurologist. They all want to just give you anticonvulsants, no one wants to figure out WHY or WHAT is causing the pain, they just want to drug you. I know the drugs fail over time and they have bad side effects. I am 58, and plan on living at least 25 more years, I can't see myself on seizure medication for nearly 30 years, I work, I drive and I have to be high functioning. I have had two of the doctors tell me I have TN, and TN is closely connected to the cervical spine nerves. I have "moderate" disc degeneration in c4,c5, c6 and osteophytes on the Vertebrae. I do feel like my jaw is sore most of the time ( right side) , however, I do not have TMJ, I don't grind my teeth... I'm sure most of this has to do with my neck, but no one is helping me solve the problem. I have had numerous images taken on my brain and cervical spine. Any suggestions?
Replies to "Hello and thank you for your reply. I saw a cervical spine doctor... ( who gave..."
Connect
@lisa2022 It sounds like no one is looking at the physical reasons for your symptoms. I personally don't trust a doctor with a quick opinion without an explanation as to why they think this is the best choice for you. It sounds like they are guessing. I wouldn't let a doctor do a procedure if they don't fully understand the problem they are trying to solve.
My jaw pressure was off so much that I ground down my dental fillings on only one side of my mouth and my dentist was puzzled. A lot of patients who have a spine problem because of an injury like a whiplash, may also have thoracic outlet syndrome that can also be related to the injury and other things like physical build, heredity or repetitive activities. The problem with TOS is many doctors don't understand it because they don't spend much time on it in medical school, so it goes undiagnosed and untreated. Often treatment is physical therapy; not surgery. A neurologist should know about this, and if your neurologists have not even considered a possible diagnosis of TOS with your symptoms, they are not doing their jobs. There are not many places to go that understand TOS, but Mayo Clinic is one of them that does diagnose it.
Having a cervical spine problem along with TOS adds overlapping similar symptoms and will confuse a lot of doctors. I came to Mayo after 5 spine surgeons turned me down for surgery to decompress my spinal cord and all could clearly understand the MRI that showed the problem, but they could not connect my symptoms to the imaging, that is until I found a great surgeon at Mayo. His name is Jeremy Fogelson and he consulted with other specialists at Mayo who were testing my TOS in the vascular lab while I was there for my consult. I highly recommend him.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Alignment of everything is important, the spine, the way the skull sits on the spine, the jaw, the shoulder position... it's all tied to the neck and spine. In addition to a great surgeon, you also need a good physical therapist who can help rehab all of this before and after surgery. I think you would be better off seeing a good spine surgeon who deals in spine deformity. Neurologists are not surgeons and don't fix structural problems.
If you want to be seen at Mayo Clinic, this link will let you check if your insurance is in network at Mayo. This is very important because spine surgery is expensive. https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
If there are any questions, call the billing department and they will help.
If you want to request an appointment at Mayo Clinic, you can use this link to get started.
http://mayocl.in/1mtmR63
To get an appointment in neurosurgery or orthopedic spine surgery, you will need copies of your imaging to be able to mail to Mayo. A coordinator will call you back after you make a request to be seen either from this link or by phone. In my case, after that, I spoke with a triage nurse from neurosurgery and they set up a temporary patient account so could mail in my records and imaging. Once that is all uploaded in the system, a surgeon will review the case. I requested that my records be reviewed by Dr. Fogelson because I had read his medical papers and knew he would be a good fit for my issues. I have a background in biology and learned a lot about spine surgery before I came to Mayo, and the important clue to what all the other surgeons missed with me came from something I read in one of Dr. Fogelson's papers which lead me to other medical literature with cases like mine. I had found my answer.
Do you want to consider a spine surgery consult? Can I answer other questions about my experience of spine surgery at Mayo Clinic and my rehab afterward?