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Possible Ehlers-Danlos Syndrome with craniocervical instability
Bones, Joints & Muscles | Last Active: Jun 20 10:24am | Replies (68)Comment receiving replies
<p>Cervical instability</p><p>I had Arnold Chairi type II decompression with c1 removal and dura placed 20 years ago. I did well for the most part. Mild headaches thereafter with se tingling in my arm sometimes over the years. Until 4 years ago. I stepped away from bedside nursing due to pressure headaches and tingling in my right arm, right should pain and clicking, tight neck and shoulder muscles and pain. Speed up to 4 mths ago. Constant every second of every day pressure and pain in my head and neck, dizziness, nausea, tingling in face and lips, coughing on food and drink, ringing in ears, fullness in ears and pain in right ear, difficulty concentrating, pressure and pain in head when I use my arms, used to be over 3 lbs now with 1 lb. Can't bend forward or look down or pressure is worse. I wear the cervical collar and this gives relief. Saw 2 neurosurgeons who said pain management and neurologist who said migraines who gave migraine meds which don't work<br />The one admitted me and did LP for hydrocephalus ind increased ICP which was negative and pumped me ful of migraine protocol for 48 hrs but gave no relief. Saw 3 rd neurosurgeon who said cervical instability. Is sending me for upright MRI flexion and extension. Said to wear cervical collar and will likely need cervical fusion. So I looked this up. Looks like I have vestibular nerve damage. I need to wear this collar. I am in IL. Put in request for 2 more neurosurgeons in Chicago to get surgical opionions. Has anyone had surgery for cervical instability?</p>
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@jacklynn12 From Chicago, it's a 5 hour drive to Mayo Rochester. I am in the Chicago area too, and I couldn't find a surgeon to help me, and going to Mayo made all the difference in the world. For me, seeing a Chicago surgeon just drug things out every time he wanted a test, I waited weeks for that and more weeks for a followup appointment. After 6 months of jumping through hoops, he decided not to offer surgery to me. I waited a month to get into Mayo, and they got all testing done in 3 days. I had an answer and an offer for help right away and just waited a few weeks to get on the surgery schedule. There may be longer waits with the pandemic, but it doesn't hurt to ask. Why do you think you have vestibular nerve damage?
I also have thoracic outlet syndrome which does cause arm and neck pain and lots of chest tightness. It affects my jaw and causes my cervical vertebrae to independently rotate, although that is much improved since I had a cervical fusion at C5/C6 and the muscle spasms have calmed down. I had similar issues with nausea and vertigo and I do have a slight bit of instability in my C spine. That was 2mm at C5/C6 which didn't prevent me from getting an artificial disc if I wanted that, but I wasn't a great candidate for that and had the fusion instead. Mayo was great place to go because they also evaluated the TOS to figure out if that or my spine issue was the major player in my symptoms. I had great results from my spine surgery and my neurosurgeon, Jeremy Fogelson is also trained in orthopedic spine, so he brings the best of both worlds.
If that is possible for you, you may want to get another opinion at Mayo since you have had the prior surgery, and with nursing work, it is possible that you could have TOS from repetitive tasks and raising your arms. This posture escalates TOS. IN Chicago, the places that treat TOS are Northwestern, University of Illinois, and the University of Chicago. Those were the only choices a few years ago, so look at the websites where you are searching to see if TOS is listed as a condition they would treat. TOS is misunderstood and missed most of the time unless you are a multidisciplinary facility that also treats TOS. I do physical therapy for my TOS with myofascial release. Surgeries create fascial scar tissue and tightness, and undoubtedly you will have tightness from your prior surgery and from any injuries, bad posture, etc you may have. Before you could try Myofascial Release therapy, you will need a complete understanding of spine instability and what risks it poses and if this is the right time to try it, or postpone until after a surgery. MFR may be able to help with all that tightness if you are able to try it. Let me know if I can be of further assistance. I would highly recommend my Mayo surgeon and he is a deformity expert and C spine expert, neuro/ortho, and teaches at Mayo and at surgeon's conferences. Mayo can evaluate TOS which causes nerve and blood vessel compression. Ask about it because you can have overlapping symptoms causing it to be missed. You will need copies of imaging DVDs to mail in if you want to seek an opinion at Mayo. Let me know if you need more information.