Melodious,
WOW, your list reads like my daughter (age 28) and my life (now age 66). My neck issues started at age 19 after a whiplash accident, another whiplash a few years later. Ive been suffering from chronic headaches and neck pain ( as well as worsening TMJ) ever since. I saw chiropractors, PT, OT, massage, acupuncture, cranial sacral practitioners of every kind. In my late 30’s some orthopedic docs (so cal area) told me I was “hyper mobile” and my neck was too loose as well as gave me a fibromyalgia diagnosis. I had several years on and off of proliferon injections. I cant say the prolo helped me a great deal. I was desperate and willing to try anything. A pain doc I see is trying to talk me into more prolo but I have resisted since I am about injectioned out. I did have some specialists at UCLA many years ago say they thought all the prolo injections caused scar tissue nodules in my neck. This is has not been able to be picked up on any imaging but this doesn’t surprise me. I (or my daughter) have so many of the same issues as you, I could write forever. We should probably talk. I have been dealing with the positional dizziness and ear pain myself for the past 2 years and been through significant evaluations for that. Thats a chapter in itself. Many chapters to share but long history of torn ligaments, nerve compression and scar tissue in various parts of my body (primarily hands/wrists,elbow). Rotator cuff tears and more recently diagnosed with thoracic outlet syndrome. I have had probably 15+ surgeries in my lifetime. lets talk about your past surgeries and the problems you had. I have PTSD from some of the recent surgeries I had.
I didn’t get official diagnosis of EDS until my daughter was diagnosed with POTS in 2007 and I began the deep dive into the POTS research and learned of the EDS link from other POTS moms. This after a 7 year journey to find the diagnosis. Even Children’s hospital in LA could diagnosis the POTS but that was many years ago. My daughter has been disabled from the POTS since age 13, has MCAS, EDS and has rarely showed signs of improvement. She did a 10 day inpatient study at Vanderbilt where they discovered she was hypovolemic - low blood volume, not uncommon in POTS. We have tried every drug out there not of which have helped and the side effects not worth it. Cromolyn for the IBS prescribed by POTS doc (also for MCAS) has been one of the few drugs to help and with no side effects. She gets 1L a week saline IV infusion. Between 2 POTS docs and about 18 years we have perfected this as really the only thing that helps her POTS symptoms somewhat stable.
I am curious who diagnosed with the EDS and the POTS as well as CCI and how you are bing treated for that. There is a really good CCI / EDS doc on the east coast. I lived 20 years in southern CA and have seen docs at UCLA, USC and Cedar Sinai and familiar with those facilities and had a variety of good and bad experiences.
I lived in Central Oregon for 10 years and familiar with OSHU. I fired my docs there. My daughter saw a POTS doc in Portland (not OSHU) and didn’t think much of her. I also have flown her to Boston’s Children Hospital along with Vanderbilt Dysautonomia Center and honestly do not think much of OSHU. Personally, if you have complex medical issues, I would don’t recommend going there. Sorry I am a bit of a medical snob.
I now live in Seattle and have flown to LA or Chicago trying to deal with my ear pain, dizziness and mild hearing loss. I don’t have a high opinion of the medical profession in this area except a few. Even my PCP says I (as well as my daughter) am too complex of a patient for him to manage. I do however had a great hand/elbow surgeon who is also an EDS specialist. He has given me some good referrals. He is on the international consortium of EDS specialists.
Personally, if you have a CFS leak that is unresolved, I would use caution before choosing an ES surgeon right away. I totally recommend traveling to get the most experienced surgeon and in my opinion Washington & Oregon is not the place to find one. I thought there was one down at UCLA? Although I like Dr. Samji, his draw back is that he doesn’t really deal with vascular issues and I wished that had been more thoroughly evaluated. Given the complexity of you medical conditions, I would suggest being at a major medical center and not an outpatient surgery center. Have you considered Dr. Hepworth in Denver? He works with a vascular surgeon. Maybe between all our brains around here, we can come up with some more doc suggestions.
I personally chose to have external ES surgery. Dr. Samji gives you some good nerve blocks and prednisone post op and I had very little pain issues. I will say my TMJ issues did kick up though. I am having some reoccurring pain issues that were present before Eagles surgery. I knew going into ES surgery it was unlikely it would solve all y neck and facial pain issues. I had hoped the ES would take care of some of the issues but honestly I think it is the neck instability, possible nerve compression and likely issues within the scalenes in the neck. I also suspect not all the pieces of my calcified ligaments were removed and pressing on nerves.
Ive been to several pain centers (Cedar Sinai) and (UCLA) not to mention a few others. I recently saw a new oral facial pain doc at University of WA. He claims not many centers taking their approach. They are doing lidocaine trigger point injections in the jaw, neck and temples. I recently had something similar in my chest, bracial plexus and scalenes and some of it was helpful. They also do “dry needling”.
As for intense pain flairs…I have had good success with botox injections (also mixed with steroids and nerve blocks) in my temples, occipital area, other neck areas and below the ears close to styloid. Pain killers barely take the edge off.
I have found that regular massage, trigger point injections and cranial sacral therapy to also be the most beneficial but needs to be done weekly to get me out of a bad pain flair. When I was being seen at the Cedar Sinai Pain center, I was given a drug called pamelor to help block the pain path to the brain. In my case it worked like a charm but caused me to gain weight.
I have a friend in medicine in SF. She says the best docs are on the east coast. In my experience she is partially right. I always check out docs CV’s to see where they have trained. There are few docs on west coast that have much knowledge of EDS and Ive come to learn this has been a major stumbling block to many docs I see.
Message me privately and we can chat some more. I have walked this path for many years and had my down days as well. I struggle to watch my daughter go thru even worse but I never give up. I know you are overwhelmed but you are not alone. we are all here to help prop you up and point in the right direction to get the help you need.