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Cervical instability?
I've been having pain at the base of my skull on the right where my neck and head attach. Ive also been having pain in my neck in several places. I know that I have several bulging discs in my neck. There's also burning pain that can get bad on the big bone at the very top of my back where my back and neck connects. But some of the worse pain is in-between my shoulder blades almost directly on the top of my spine but a little to the right and it's a very localized tiny spot that is sharp and radiating. For years I've had the upper back burning pain and some neck pain but recently it's become debilitating. I noticed it started getting worse after starting a biologic for my psoriatic arthritis and after they double my dose to relieve my joint pain it's gotten severe. The base of the skull pain and tiny spot pain is very new, like I said since I started the biologic. I know I have eds and I've been also having these other symptoms
- headaches ( almost every day, optical and pressure )
- dysautonomia
-brain fog and memory problems
-subjective fever and excessive sweating
-heavy head
-dizziness
- hard to swallow
-sinus problems
-fatigue
- lower back pain ( I do have a bulging discs there too)
I know I have a lot of issues going on like allergies and thyroid modules and an autoimmune disease but I looked into cranial instability and it just seems like it fits. I started wearing a soft neck brace when the pain wasn't so bad and laying down would help but when the pain started getting worse I got a hard neck brace and that helped even more but my upper back was still very painful so I ended up buying a cervical thoracic brace and it's been helping a lot. Now if I don't wear the brace the pain at night is excruciating. I've just doing physical therapy for my upper back and neck and swimming and walking my dog everyday. I'm prescribed Lyrica and oxycodone for my bulging discs and they don't even touch the pain. I've also tried muscle relaxers and over the counter meds and they do nothing. Facial realse my boyfriend does with massage can help and sometimes heat but that's starting to not even work. The only thing that seems to help is wearing a the brace if I'm going to be sitting or standing. I feel like I'm in prison because I can't wear it for a long time because it's hot and uncomfortable and the pressure on my jaw can make my head hurt more. Nothing's showing up on MRIs and when I asked my pain doctor what's going on and also why I have so many bulging discs in my neck he said idk why your so young and having so many problems and that's it. He said he can treat the bulging discs and that's it. I honestly don't know what to do and who to get help from. Im pretty sure it's instability because of my symptoms but I'm not a doctor. I can't live like this anymore.
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You need to get a referral to see a neurosurgeon and see what they think. Not a neurologist.
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3 Reactions@tenayaisapunkrocker Welcome to Connect. You do need a specialist to diagnose your spine condition. There are often muscle spasms that accompany a spine problem and that can cause vertebrate to move out of proper alignment or rotate. That happens to me. When my upper cervical vertebrae rotate, it causes a lot of pain at the base of my skull, usually on one side. That happens because a muscle is getting stretched and the other opposing side muscles are “punishing” it. Physical therapy can solve those problems a lot of the time. If you do have instability in your neck, you need to know. A spine specialist would be a good choice for a consultation. Both neurosurgeons and orthopedic surgeons can be spine surgeons. It is important not to try to diagnose yourself. Spine issues are tricky and cervical instability at the skull spine junction can be serious. Any offset movement of an unstable spine level may contact or put pressure on the spinal cord within and that would be associated with symptoms that can vary depending on what level has a problem like this.
Have you had an accident or injury to your spine? Are you involved in high impact sports that could put wear and tear on your spine?
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1 Reaction@jenniferhunter no Injuries and Ive been disabled from my other health problems since 2016, so I live a very low impact life. So its very strange that these bulging discs and other problems are happening. I'm 35 and my back is similar to an older person that's worked a physical job or something. Like I said I have been diagnosed with eds and I wouldn't diagnose myself but I've come to find that if the doctors who I've been seeing and complaining about this have done nothing and haven't referred me to a specialist or anything. I just recently found out it's probably a neurosurgeon I need to see. Just as someone else who commented and I sent several emails to ones yesterday.
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1 Reaction@tenayaisapunkrocker When I was faced with selecting a spine surgeon, I looked up everything I could about their education, research and their areas of interest, publications and awards at spine conferences, etc.. If you do have disc issues at C3 or above, you need a surgeon with a lot of expertise there. The nerves for your life support that control your heart and lungs are exiting the spinal cord around the C 3 area and a lot of surgeons will not operate there. If that turns out to be what you need, you can find those experts at major teaching medical centers like Mayo or Cleveland Clinic or universities with medical schools. Perhaps you won’t need work done there and physical therapy may be an option. My surgery was a fusion of C5 C6 done at Mayo.
@jenniferhunter thank you for the advice. I'm trying to get into mayo spine clinic. Im working on getting my images to them
@tenayaisapunkrocker My surgeon at Mayo Rochester is Jeremy Fogelson. If you have upper cervical issues, he is an excellent surgeon with lots of expertise and experience. He is a deformity expert neurosurgeon with orthopedic fellowship deformity training. You can request that he review your application. That is what I did. 5 local surgeons wouldn’t help me, and he did. My surgery was a success.
Tenaya, You might see jenniferhunter's Jeremy Fogelson or loriesco's Vinco Zlomislic.
Do either of these gentlemen handle a video conference?
https://ehlersdanlosnews.com/news/spinal-fusion-carries-greater-risk-complications-patients/
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1 Reaction@jenniferhunter thank you! How's your quality of life been? And do you also have EDS? How did you contact him?
@tenayaisapunkrocker I don’t have EDS. My spine issues were caused by a whiplash and 20 years later had deteriorated enough that I needed surgery. I had a ruptured C5/C6. That collapsed by 50%. It caused bone spurs to grow into the spinal canal and press on my spinal cord. I had a single level fusion with a donor bone disc and no hardware. I stayed in a neck brace for 3 months. It has been 10 years and I am doing fine. I can get neck spasms that I need to work on. I also have thoracic outlet syndrome that affects my neck and shoulders. My spine has been fine and I do everything I can to maintain core strength and correct spine alignment. When I applied to Mayo, I asked for Dr Fogelson to review my case and he did.
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