New here, hanging on to life by a thread, don't know where to go next

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Hello everyone, my name is Mark and I’m brand new here. I’m already super impressed with the high level of knowledge I’ve seen from many members. Here is my story for those kind enough to take the time to read it.

History of trauma and surgery (w/ lots of smaller stuff not listed):

Rollover car accident about 24 years ago, head started twisting pattern w/ vestibular issues that were not discovered until years later

Left hip and SI joint would never stay in place, pubis would not stay in place. PTs would do shotgun technique and temporarily get SI joint and pubis in, would never last. Body wide twisting pattern- many PTs, OTs and DOs could ascertain that pelvis and head were both involved in the dysfunctions.

2020 bilateral hip FAI and pelvic floor reconstruction at the Vincera Institute. Felt like this was treating the symptoms rather than the cause. Head and pelvic dysfunctions continued to mirror each other, but worse after surgery.

Ongoing high velocity chiropractic adjustments over the years destroyed me! My c-spine and pelvis would never stay in alignment. I didn’t know where to go other than chiro and standard PT and they were making me much worse over time.

2021 doing light single leg deadlifts in PT (for surgical issues), being cued into chin tuck, head gets pulled forward and I’m hearing CSF in my ears the next 6 months and can barely walk. The compensations collapsed.

Symptoms: My cervical spine and jaw feel almost permanently sublaxed. Always have a clockwise rotation of C0 and C1, maybe C2-C3 transverse process pushes out laterally left. Sharp pain at left ilium, left pelvic floor. Feels like lower body is disconnected. Extreme weakness. Always a rotation through pelvis, usually an upslip on the left. Extreme pull on my head that get worse when laying down. Pulls at sacrum / coccyx and head at the same time. Worse when laying on left side, feels like left hip and shoulder are “out” all the time. I can look in the mirror and see all the movement on the left jaw, TMJ line on both sides. Breath is extremely shallow, on supplemental oxygen now. Wake up many times and night and sleep is extremely difficult. Chronic pain at neck and pelvis. Blurry vision in left eye with certain head positions. Still hear CSF “wooshing” in the left side of my head if neck in compromised position too long. Feel like I’m dying if I go too long between treatments. I have an incredible counterstrain PT therapist that is keeping me alive!

Where I have been and what I have tried:

I have done a crazy, insane amount of conservative therapy in the quest to survive and for not being able to get anywhere with western medicine. To the point I’ve sold my house, bankrupted my family, and have very little resources left. Counterstrain is my main modality that has helped me the most. I’ve been to the very best people that are teaching it - unfortunately they have found a lot of brain, spinal cord, and nervous system issues. It keeps progressing to new layers of dysfunction (a good sign) but it’s always seemed like I need western medicine to intervene to have a chance.

I was diagnosed with central apnea along with OSA. Counterstrain pros are finding scar tissue on my phrenic nerve and fibrosis around my lungs. My main counterstrain guy seems to think my chronic lymph node / lymphatic drainage issues are related to the scar tissue issues; although I don’t understand the connection. He also thinks restrictions in my endocrine system are at least partially responsible for my body-wide ligament laxity issues. It’s a different way of diagnosing and thinking, but he has helped stabilize me more than anyone.

MNRI- extensive amount of OT and PT for primitive reflex work for adults that have had concussion, brain injury, or similar.

Cranial Sacral work- week of intensive at Upledger including ongoing local CST providers

Injections- 1 round of PICL at Centeno-Schultz about 3 years ago for CCI / atlanto-dental instability (per DMX results), many prolo, PRP for low back, hips, SI joint, cervical ligaments, facet joints, etc. Stellate ganglion block.

Upper cervical chiros (Blair, NUCCA, atlas-orthoganol, etc.), frequency specific microcurrent, cold lasers, AMIT, etc., etc.

EMDR, ART, etc. for trauma. TMS for depression (could not tolerate due to cervical instability and pain).

Western Medicine / Potential Surgeries

I feel like I’m miles behind where I should be in this regard. Too many times getting gaslit and going to many specialists with no results or answers.

Recently had Dr. Ryan Osborne review my imaging and recommend a left styloidectomy. He said my styloids were normal length but looked very compressed on the left (likely due a rotation or translation). He doesn’t take Medicare so looking for another surgeon.

In the queue about 3 months now for Dr. Bolognese for potential CCI and tethered cord. I honestly don’t know if my imaging will support a recommendation for surgery. My imaging and radiology reports note atlanto-dental degeneration, left TMJ degeneration, partially empty sella, impinged L5 nerve root, etc. but don’t know that there is anything super remarkable to the average neurosurgeon. I think I have a couple areas of mild central canal stenosis at C6-C7 and the coccyx; not sure if that is actionable.

Summary

My issues have been progressively getting worse again and I feel like I’m running out of time. My body can’t recover and is in sympathetic dominance all the time. I need to get my breath and sleep back for starters! I have been panicking, because I can never make it anywhere in a timely manner with the endless queues of western medicine. I’ve been to the emergency room a couple times and learned that definitely does not get me anywhere. I would super appreciate any advice that is offered. I’m terrible with technical stuff but know I need to figure out how to get my imaging on here for review. I did have a standing CBCT scan a couple years ago that’s probably not in a format I can transfer, but Dr. Osborne was just looking at my MRI results.

I would not wish this on my worst enemy and I will never judge anyone’s circumstances or position in life again! What a brutal way to learn that lesson, but everyone in this forum has my sincere empathy!

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7 months post op with Hepworth update
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Oh goodness, you’ve been suffering with so much for so long!
Have you been diagnosed with hypermobility? We’ve had lots of discussions about hypermobile Ehlers Danlos Syndrome so there might be some useful info in some of the discussions which you can search for, @Snapple2020 has always been helpful with info about that and the best doctors…
The styloids can compress the vagus nerve, it lies next to the IJVs between the styloids and C1 processes, so that could cause some issues like breathing, digestion, anxiety, BP variations, heart arrythmias, parasympathetic nervous system. It might account for some of your symptoms , although it sounds like the therapist you’re seeing is very knowledgeable & thinking outside the box of normal medicine?
Dr Osborne is very experienced and has done lots of successful surgeries, it’s a shame he doesn’t take some insurances though. He also doesn’t do a C! shave if your C1 is involved in compression as well. (We’ve had quite a few discussions about CCI & whether having the C1 process shaved & styloids removed will make this worse- there’s no consensus on this with either doctors or members, but it is something to consider). I don’t know if you’ve read the Newbies Guide Section about common symptoms? It sounds like you might have IJV compression , the whooshing you feel might be pulsatile tinnitus? That’s common with IJV compression, along with head and ear pressure, off-balance feelings to name a few… If you maybe have IJV compression, then that impacts which doctors are best to see as not all remove enough styloids to help with VES.
The experienced VES doctors that we know of are Dr Nakaji in AZ (although he has turned down some members with complex medical conditions), Dr Hepworth in CO, Dr Costantino in NY.
I’ll send you a message about Dr B.
I’m not very good with technology either, but if you can upload some we can look- the styloids don’t show as well in MRIs, but should on the CBCT scan. And if you could get a new CT with & without contrast then that would be helpful.

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Thank you for the kind and detailed response. I’ll work on that imaging uploaded, possibly getting a new CT scan with contrast as well, based on that input. I was actually originally referred to Dr. Hepworth, but their office has been one of the worst I’ve ever encountered at answering their phone. Dr. Osborne’s office was super easy to get into. If his office is not a reflection of him (Hepworth), maybe need to go back there. The same provider that referred me for Eagle’s sent me to a MIPS (minimally invasive procedure specialists) group out of the Denver area as well that is supposed to be good at diagnosing vascular restrictions that are commonly tied to pelvic pain such as mine.

I’m very hypermobile in areas which seems to make other areas extremely tight. Definitely don’t have EDS, don’t know about hEDS. The left side of my body has been going a different direction than my right for years. Most my PT / OT providers that have been working with me a long time think it’s nervous system dysfunction, chronic pain, chronic systemic issues vs. EDS. I have had quite a few vagus nerve restrictions in my counterstrain treatments, so I know it’s part of the issues. I have read a few notes about C1 shaving in addition to styloid removal, but that is new to me. Really appreciate all the info about which providers do what procedures, that is the part that is hard to navigate for me!

Best,
Mark

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Oh my, I can speak to the road you have been down as much applies to me as well. I have spent years being gaslit myself.

I also have medicare with a supplement. Not sure if that is what you have? If you are on a Medicare Advantage plan, you are deep trouble with these issues and I suggest you get off of it as soon as you can. More and more, I am finding those with expertise with hypermobile ehlers-danlos are only seeing patients if they pay out of pocket for at least a consultation because we are such complex cases. More medical groups are not offering standard services because medicare reimbursement rates are too low. This is only going to get worse as all the baby boomers come into the system.

I had whiplash at age 19 and 22. Im 69 now. I have been thru the ringer with all kinds of modalities just like you. In my 30’s some orthopedic docs were doing a prolo-therapy study and I was their guinea pig. Back then they told me my neck had been over-adjusted by chiropractors whom really are the only ones who have brought me even partial relief. They told me I was hyper mobile but I didnt know what that was. I got no explanation or reference to Ehlers Danlos back then. At one point I was told at Cedar Sinai Pain Center eval that the promo injections caused scar tissue masses in my neck when evaluated for jaw pain. At this time, I developed a big growth on my left femur. The orthos sent me for scans and confirmed it was a bone tumor and indications of cancer. Luckily it was benign and they took bone off my left iliac crest (big mistake). I don’t think my hips have been the same since.

I started having jaw issues in late 30’s but they got bad in early 40’s. I was told back then I had severe osteoarthritis in left jaw. In a bad pain flair, I had weekly massage, OT and cranial sacral work for 6 months straight to pull it under control. Its the first time I had done cranial sacral and luckily it was by an old osteopath that knew his stuff. It’s hard to find someone who is skilled at it and done more than a few weekend workshops. I have been to a few pain centers including a oral pain center. The new thing at UW in Seattle is to to do trigger point injections with a novocaine like product. When I tried to give the literature on EDS patients being resistant to numbing agents, they would take it. Hence I left. I have found most TMJ specialists to be con artists selling expensive appliances that dont work or make things worse. I have found a wonderful neurologist that I get quarterly botox injections in jaw and neck after having incredible pain in my temperalis areas and shooting pain up into my ears that started in 2015. He has given me a diagnosis of dystonia and torticollis. He was the one to suggest I might have eagles. My styloids were elongated. I had ES surgery in 2020. I have pelvic floor reconstruction in 2019 due to severe prolapse….the list go on.

Di the ES surgery help me? Maybe some however the surgeon did not look at vascular compression and I suspect left segments of calcified ligaments in there. Follow up CT in 2022 confirmed styloid taking off at skull base. New CT now shows styloids there. I haven been able to have them reviewed yet or uploaded so I can see their length. There are a few people on this forum who are pretty good at reviewing scans and Im trying to connect with them.

In 2022 i had to have a lower molar extracted after a failed root canal (couldn’t get me numb). I warned the oral surgeon I had TMJ. Two days after surgery I was in the ER in extreme pain, facial nerve issues and vertigo. My TMJ specialist at the time, said it looked like an “aggressive” extraction based on my bruising. I have struggled with Vertigo ever since. I even flew back east to see a hearing & dizziness specialist.

Fast forward to now, I had some (4) serious eye movement/dizziness episodes (and rapid hearing loss) occur that caused vomiting and put me in bed. Never in my life has this occurred. My neurologist thinks its ears. Some was triggered by position. Mostly up and down and to the right. I have had a hEDS PT evaluate the stability of my neck and hips/SI joint. My C2 is borderline to the right of normal. He states my SI joint is stable. I lean towards right hip up and forward. Its been that way for year and just wont stay in place. I have huge problems with my hips & piriformis (thats another long story for another day) I have a huge history of adhesions and scar tissue/nerve compression. My nervous system is worsening now since I am aging.

Back to the neck, ear and dizziness issues. I am now scheduled to see Dr. Hepworth in January to evaluate for possible vascular compression. He looks closely at the internal jugular which has never been evaluated before. Jules is right on to ask if you have been told you were hyper mobile? Diagnosed with EDS? I would be surprised if you went to some of these places and got treatments and EDS was not suggested? If you have not been evaluated for that, it has been a huge oversight. If you do have it, that umbrella might help guide you better. Always willing to talk.

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Mark,

I suggest a more thorough evaluation for any form of EDS. There is about 10 types at this point. Dont rule it out. I only learned what EDS was when my daughter was diagnosed with POTS (Postural orthostatic Tachycardia Syndrome) at age 13. She started passing out at age 7 and it was dismissed as “vasavagal syncope” …..well as things worsened, the specialists couldn’t figure it out and I went to a few that gaslit me. Heat and exercise intolerance and migraines. It took her down at age 13 and she is disabled from it now. It was only because we moved to another state and we got a new pediatrician who recognized it. This is when I met other POTS parents whose children also had EDS. 60% and rising POTS patients have some form of EDS. Some docs say EDS predisposes you to POTS. with a virus or traumatic injury triggering it. There has been some focus more recently on nerve inflammation. I know my nerves are inflamed as hell. There is some talk now about POTS being an autoimmune issue. Jury is out on some of this.

There is a few that might be able to help navigate to see Dr. Hepworth. He does charge $900 now to be seen outside his practice (separate consulting practice) for a consultation. When you see him in person at his office, it is covered by medicare so I am told. This may get you in the door sooner. I am seeing alot of medical practices that deal with complex patients do this or just dont plain take any insurance at all. They dont get reimbursed by medicare or any insurance to deal with and take the time to wade thru our medical histories looking for answers.

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Thank you Snapple for your story. I was surprised how much of that resembled some of my issues. I’m sorry you have been through all that. You are super resilient fighting through all that. I’m very sorry about your daughter as well, so sad that she was disabled at such a young age!

For whatever it’s worth, I wanted to tell you and this forum about counterstrain. Go to counterstrain.com and find the highest level / trained provider near you that you can find. At least for me, they have been heads and heels over everything else I have tried. They have treated cranial nerves, lymph nodes, lymphatic drainage issues, inflamed nerves, brain, spinal cord, nervous system dysfunctions, etc., etc. I’ve seen them solve other very complicated cases, just not me (yet!). They are usually PTs by trade, but really they are the highest level osteopaths.

I suppose the question (as typical) with EDS would be finding a provider that is qualified to diagnose a complex case. I will not rule it out. I’m in process of talking to someone to help me transition to Medicare Part G. Will that help vs simply only Part B or still not enough? Really clueless with how to navigate insurance issues as well.

Small sidebar, I’m procuring a Prosomnus device to help hold my jaw in a better position at night and get a little better airway. Also had an orthodontist suggest getting an MMA surgery to help with the narrow airway and TMJ nerve issues. That would be hard to justify to Medicare and hard to prioritize medically with multiple issues. But for me, I imagine just getting the airway back and the nervous system in consistent rest and repair vs. constant fight or flight would do wonders. Easier said than done!

Overall my C1 has never stayed aligned and that’s one of my biggest issues. My therapists have not figured out why. I know surgery is always a big gamble (a couple big ones backfired on me already), but wondering if creating space can allow vascular and other systems to heal and repair…

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Patient Advocate for dealing with insurance and surgeons?
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Hi Mark,

Counterstrain looks interesting. I see alot of the osteopathy in it (a mix of different modalities) which I believe the cranial sacral I have had in the past to be one of the most beneficial modalities. IT is hard to find good therapists who do it and now many only accept cash paying making it difficult to get the regular treatments. EDS evaluation? What state are you in?

Medicare part G? I am a trained state medicare volunteer and know how this works. What do you have right now? Just traditional medicare with NO supplement or Medicare Advantage Plan? No Part D drug plan? If you dont have those, how long have you been just on just Traditional Medicare (Part A & B only)? This gets dicey and timelines apply and so do penalties unless you fall into very low income category and the penalties are waved. Let me know what you have now in place and the time you have had it. That will help guide decisions.

In my opinion, Medicare with a supplement (Part G) with Traditional medicare (Part A & B) along with a Drug RX Plan (Part D) will serve a complex medical patient. Being on a Medicare Advantage (MA) Plan in my opinion is the kiss of death and nothing more than an HMO designed to limit care and lots of prior authorizations. Its cheap and works IF you don’t have any health issues. MA does not travel out of state whereas Traditional medicare with supplement travels with you. Changing to Traditional Medicare from Medicare Advantage is not so easy (unless you have been on it less than a year) and the Insurance CO can require physical, history and put restrictions for periods of time. This is where it gets dicey.

Plan G (supplement) although a monthly premium pays all co-pays and easier to get care with it rather than pay co-pays. I get enough care, it is worth it and buys me peace of mind and usually dont have any out of pocket expenses. Unless it’s a provider who doesnt take medicare or any insurance. If you need surgery, you want that Plan G in place.

I see your sleep apnea issue (narrow airway) as the biggest thing if you cant breath at night. My C1-C2 go out all the time but it is tolerable until I get an adjustment. Short of a fusion, Im not sure how else to keep it in place. I get regular massage and the botox to take care of the muscle tension and dystonia. I can only suggest you see a specialist who in expert in CCI and evaluate whether you have ES that needs surgery. If you got compressed nerves in neck, your body will compensate and pull in different directions. Im pretty certain I have nerve compressions in my neck and possible vascular compression.
I know it’s hard to prioritize multiple medical issues. Im doing it myself and move from one body part to the next and usually driven by what is the worst pain. I vacillate on what to do next. I run on a dual track because it can takes months to get into see specialists. One step in front of the other. Since Hepworth is an ENT also, he might be able to guide you on the whole jaw/TMJ/airway thing?

Hope that helps. More than happy to help you thru the medicare gauntlet. it surely is a beast.

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Thanks for that info as ever, @Snapple2020 , you’re so knowledgeable & such a help! :hugs:

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@Isaiah_40_31 suggested this for Dr Hepworth’s office:
‘Try emailing Dr. Hepworth’s scheduler to get an appointment - kwright@denversinuscare.com - instead of calling the office. I’ve heard there are some staffing changes going on in Dr. Hepworth’s office so things are a bit discombobulated right now.’

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Thanks for all that info Snapple. Dang it!!! I just had a medical consult with a insurance guru today and she said I wasn’t even worth pursuing submitting for Part G due to the timing. I’ve had Part A and Part B since March 2024 and live in Washington State. She said they would likely reject me due to my age and medical history. Western medicine has not accurately diagnosed me, but I was also approved for disability at the age of 44 on my first try. So she said it would be next to impossible to get approved. She also said and advantage plan would be a bad idea with the national providers I’m trying to see (same thing you said).

Counterstrain is expensive. I have found a few local talented providers that take insurance. I’m lucky to live a local hotspot of talented providers. It’s so far ahead of everything else I have tried (including cranial sacral) that I will be an advocate for it the rest of my life. They are constantly treating systems on me that are affecting my cranial nerves and my nervous system at large. I went to a lot of the wrong people and a lot of the trial and error hurt me badly. But I ended up finding the best people on the planet; wish I could be a better advocate to help find them for others in need of their skill set!

Yes, I really like the idea of getting my jaw and airway back in place one of these days! :slight_smile: Slightly important. At the risk of being redundant, I think a maxillomandibular advancement would be great for me, just very hard to justify to Medicare (very expensive) and also hard to fit into order of operations. Can’t remember what else I need to respond to, might need a follow up after re-reading your response! :slight_smile:

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Hard to find an expert in CCI other than a neuro like Dr. B. I should get an opinion letter in about 1 month. DMX results said I had CCI a few years ago. Interesting enough, the counterstrain pros think I have functional tethered cord and functional C1 instability. I think that actually furthers the case that the vascular restrictions could be causing the twisting throughout the spine- trying the create space, etc. Anyways, really appreciate the input on Hepworth, will definitely pursue a consult with him.

Best,
Mark

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Thank you very much Jules, will do!

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OMG Mark! I am in Washington too! Message me privately and we can connect via email or phone. I am pretty resourceful when it comes to figuring out how to get around obstacles. I do believe there is a Part G that people who disabled can purchase but its pricy but after a period of time, I think you can change to a lower cost one. I’ll take a look see. Dont give up the ship on this one yet.

I was trained by state as SHIBA volunteer due to my own frustration about being misguided into a Medicare Advantage Plan and Blue Cross refusing to let me out of one after 3 weeks. I later learned that I had 1 year to change and BC was in the wrong. I even told an insurance agent awhile back about this rule which he was unaware of.

You are in a tough spot. The time to have gotten Part G was within 3 months before or 3 months after you started Medicare if I remember the rules correctly. This is the period they cannot deny you. The dicey stuff is in these timelines and open windows. I will pull out my SHIBA training book and look at the rules closer but here is google search:

“Yes, you can apply for a Medicare supplement (Medigap) plan 18 months after starting Medicare, but you may face limitations, as your initial 6-month Medigap Open Enrollment Period has likely passed. Insurance companies can use medical underwriting, which means they may charge higher premiums or deny coverage based on your health status and pre-existing conditions. You can apply at any time, but the best time was during your Medigap Open Enrollment Period, which is a guaranteed-issue period where you can’t be denied coverage or charged more based on health”

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CCI Expert: Fraser Henderson

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That’s cool you are in Washington State. Thanks so much for all the information. It might be a long shot but I’m definitely willing to give it a try if you think there’s a chance!

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@stoeserm1 - To private message @Snapple2020 - just click on her screen name in this sentence or above one of her posts, & that will take you to a page where you two can message privately.

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