Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[Daffodil]

i had no idea that CCI/autonomic dysfunction were even a thing but this chiropractor i am seeing has been specializing in this for a long time by the looks of it. lots of posters on the wall describing this very thing...lots of publications.,,,so strange. its like when naturopaths were touting leaky gut as being so important for decades but the medical community largely ignored it.

on another note, when i click "join group" on the BTM facebook page, it says "pending" for a few days but then the "join group" button becomes active again. does this mean they always reject my request?? i wonder what the problem is :::sigh::::

 

[fredam7]

If you had read through this thread, you would have found a lot of skeptical posts. The skeptical posts are not moderated. They are allowed to remain on this board. And that is how it should be. The current estimate is that one in 15 people with EDS will develop CCI. You mentioned in your post that you do have EDS.

She has many symptoms of CCI. Her posts make it clear.

--that user wrote they had no head or neck symptoms , I just repeated it back, why are you extracting a sentence as if I'm telling them they have no symptoms at all? The person was talking about fusing their entire neck but that another dr found nothing wrong in their neck imaging and they experience no head or neck symptoms. I suggested getting another opinion , there are many good neurosurgeons and orthopedic surgeons out there.

I understand this is a living hell. I've been there.

Every single symptom you listed can originate from the neck, and that is all the more likely given that you have EDS. The severe head and neck pain, that you have radiating weakness and numbness, is a classic sign of cervical radiculopathy. Cervical radiculopathy is different than CCI. Here's a link from John's Hopkins explaining this condition.

--why are you diagnosing me, with no information at that? I have too many diagnoses as it is from multiple drs. They've already opined what is causing the head and neck issues and more investigating is being done regarding vessels. I also have other conditions I'm not comfortable talking about that could be the source and it's related to a severe large fiber disorder.

You wrote that when you turn your head you get more confused. That is a classic symptom of AAI. I had this as well. I was thrilled when it went away after my fusion.

--I don't have AAI. I am sincerely glad you had symptoms that resolved , who needs confusion when turning their head?!

Your breathing issues are classic CCI. Both Jen Brea and myself had breathing issues, and we both had our breathing issues go away after surgery.

--no, I have pulmonary issues, immune deficiency, severe and chronic black mold exposure etc. There are numerous pulmonary issues that can cause breathing issues . Small fiber neuropathy can exacerbate breathing issues , I have small fiber

After my skull to C2 fusion, I went from being profoundly disabled to getting my life back. I have literally been going to the gym and pumping iron!

Also, in regards to my fusion: I have good range of motion side to side as well as up and down. I can drive, handle all tasks, etc. This is the norm for a skull to C2 fusion.

--Glad to hear you are pumping iron and have a nice range of motion . Im unsure what you mean you by it's the norm , you mean most people who have this surgery , have this outcome regarding range of motion, driving and handling all tasks ?

Please spend some actual time in CCI communities. There are thousands of people who have had these surgeries, and they would be very happy to share their experiences with you.

--I don't know where those communities are but I'll look into it, thanks .

Of course, no surgery has a guaranteed outcome, whether that surgery is for CCI or anything else, such as knee replacement.

When fusion surgeries are done by the neurosurgeons I recommend, people's outcomes are overwhelmingly positive. That is the reason why I only recommend four neurosurgeons at this time. I have done hours upon hours of research into which neurosurgeons are consistently competent. As of now, I'm not comfortable recommending other neurosurgeons. There is a strong need for more expert neurosurgeons in this area, and I look forward to more being available in the future.

It sounds like you're casting doubt on Dr. Kaufman's ability to diagnose MCAS and POTS. If you read the research, you will see how very common POTS and MCAS are with both ME and CCI, and you will also learn about how they are diagnosed.

--I'm familiar with these disorders . 2 allergist/immunologists diagnosed me with MCAS and a cardiologist confirmed the POTS after a neurologist sent me to her . I am not sure I have Pots because I passed out so quickly during tilt table and it appears I have an inner ear disorder. But that's irrelevant here and so is the fact I have MCAS. Anyone can get an idea that the specialists i mentioned , are usually involved in these disorders.

The vast majority of internists wouldn't take such liberties to diagnose these disorders . There has to be known measures that were used . And I have not seen the MCAS /pots/CFS strong link to cci. It seems to me that this is very new territory . Those getting the surgery , are pretty much breaking new ground so it's a stretch to say they're this highly correlated . The outcomes are not all the way known yet . And many people have CFS and do not have MCAS or pots or cci.

POTS and MCAS are legitimate conditions with actual diagnostic criteria. Similarly, CCI is a legitimate condition with actual diagnostic criteria.

--i never said any of these were conditions were illegitimate .

CCI is not extremely rare.

You write that the "surgical outcomes (of CCI surgeries) need to be reflected upon."

I agree. That is why I have immersed myself in the CCI community for nearly two years. I immersed myself in that community both before my surgery and after my surgery.

I took my decision to have neurosurgery very seriously. Before having surgery, I researched every bit of data I could find, from published scientific articles to the accounts of thousands of people who have had fusions. I did not jump into this blindly. Quite the opposite. My entire life and well-being were on the line. I was not about to make a mistake.

--I really don't know why you think I was talking to you with my posts , I'm sorry but I've never interacted with you , I'm pretty new here . I will look for your posts going forward.

Again, please spend time in CCI communities where thousands of people would be happy to share their surgical outcomes with you.

In the meantime, here are some facts to reflect upon:

1. People who are fused skull to C2, as I am, have good range of motion. We can drive, handle all tasks of daily living, etc.

2. The vast majority of surgical outcomes are positive when people go to an expert neurosurgeon.

I understand that the thought of neurosurgery can be scary to you and many others. I also understand that CCI, as it relates to ME/CFS, is a new concept to many people. New concepts tend to attract a backlash. Even those new concepts that ultimately turn out to be true go through a period of intense doubt.

--may I ask how you were fused? I mean specifically . Did the surgeon use bone from your pelvis ? Bmp? Screws and/or rods? I don't know if this has been discussed or where.

Before I made the decision to have neurosurgery, I put in hundreds of hours of research, looking into scientific literature as well as joining groups of actual fusion patients, where I had thousands of personal CCI stories to draw upon. I did all of this while very ill and bedbound. It was extremely important to me to get this right.

Before I figured out that I had CCI, I spent years bedbound in a dark room. But now, my PEM and POTS are gone, my brainfog is gone, my light and sound sensitivity are gone, my neck pain and vertigo are gone, my headaches are gone, my MCAS is gone, and my breathing issues are gone.

--I'm very happy for you . Anyone that gets out of the nightmare , is a miracle and lucky . I wish you continued success and more iron pumping.

I'm back to living my life! I'm socializing again. I'm leaving my house again on a regular basis. I'm even working out on a treadmill and pumping iron.

To you and everyone else reading this, you each have your own decisions to make. I wish each of you all the best.

--sorry my format is bad, when I press reply it all groups together .
Y

 

[jeff_w]

Megan is a warrior and has had an almost full spinal fusion. Her neurosurgeon is named Dr. Frim. She's one of only two people in Beyond the Measurement who are fused at that many levels. The other 6,000 people in that group are not.

Megan has a very severe case of EDS. Before having her first spinal surgery in her mid-20's, she had 19 surgeries between both scapulas and shoulder joints.

In other words, it wasn't only her spine that was impacted to the point of needing surgical intervention. She had a long surgical history before having any spinal surgery.

When her first halo bars were removed she started gagging and felt her skull slide into her throat!

Dang! That didn't happen to me when my halo was removed. Megan and I are the only two people I know of who were in a halo prior to surgery. It's not the norm. If it were, I wonder how many people would experience the skull sliding into the throat? Hopefully we will never have to find out!

 

[jeff_w]

UPDATE:

Hi Everyone! I post in Beyond the Measurement very often, with updates about my fusion, health, etc. I realized today that I had not informed you guys about what happened to me in late 2018.

Here's what happened: A physical therapist was working on my strength, and she then decided to work on my neck range of motion. This would have been fine, except she proceeded to grip my skull, and she then twisted it without warning or asking me. This is a completely inappropriate maneuver for someone who has had a fusion surgery.

After she did this, I immediately felt "off." I realized something was damaged, as I heard clicking noises coming from my hardware, and my POTS returned. Overall, I had a return of some pre-fusion symptoms, but at a much less severe level. PEM did not return, but POTS and dizziness did. I contacted my neurosurgeon, and he told me to get a CT scan, which I did. The CT scan revealed that the PT's inappropriate maneuver had indeed damaged 3 of my 6 fusion screws. My skull to C1 was still stable, but my C1 to C2 was not.

Fortunately, my neurosurgeon was able to quickly fit me into his schedule, and he did a revision surgery that replaced those 3 screws. The revision was a much shorter, less invasive surgery. I'm back to doing well. I've been going for long, vigorous walks and lifting weights.

The only issue I'm having now is withdrawal from opioid pain medications, which I always go through when coming off of pain meds, and the revision surgery was no exception. I'm through the worst part of withdrawal now, but it's still uncomfortable. I find that exercise helps a lot with withdrawal, and I'm thankful every day that I'm able to exercise without PEM. Instead of PEM, I feel an endorphin rush, which helps to counteract the opioid withdrawal symptoms.

I was seriously angry about this setback. I posted about it in detail in Beyond the Measurement.

At this point, I will now have to be in a cervical collar for three months as the fusion revision surgery solidifies. Being in a cervical collar for a few months is a standard practice after fusions. I had hoped all of that was behind me, but it was not, thanks to the PT maneuver.

Overall though, even with this frustrating setback, I'm very thankful that the revision was successful and that I have regained my health.

 

[frozenborderline]

The only issue I'm having now is withdrawal from opioid pain medications, which I always go through when coming off of pain meds, and the revision surgery was no exception.

have you ever tried ultra low dose naltrexone or low dose naltrexone in conjunction with the pain meds? It should help with withdrawal and depending on which you take first and the dosage shouldn’t cause precipitated withdrawals (low dose naltrexone is supposed to do This occasionally but ultra low dose naltrexone has never been known to do this)

 

[waiting]

@Cort just published an article on this topic today:

https://www.healthrising.org/blog/2...fibromyalgia-pots-craniocervical-instability/

 

[Wayne]

she proceeded to grip my skull, and she then twisted it without warning or asking me. This is a completely inappropriate maneuver for someone who has had a fusion surgery.

Thanks much for the update @jeff_w. Just wanted to mention, this is HIGHLY inappropriate to do on anybody, whether or not they've had fusion surgery. Have you thought about reporting this person? You simply do not do something like that without first warning or asking the person you're working on.
--
I recently read an account of a man who went to an ENT with mild tinnitus. Without or warning or asking, the ENT proceeded to grab his microsuction tool and began working (vacuuming) his sensitive ears. His tinnitus immediately went from mild to severe, and has not come down.

Perhaps off topic, but it would be good to know that ENTs and audiologists for the most part know very little about tinnitus. In fact, they cause a lot of tinnitus with some of their outdated testing procedures which are not only ineffective and unuseful, but very dangerous to someone with sensitive ears.

 

[ScottTriGuy]

I recently read an account of a man who went to an ENT with mild tinnitus. Without or warning or asking, the ENT proceeded to grab his microsuction tool and began working (vacuuming) his sensitive ears. His tinnitus immediately went from mild to severe, and has not come down.

Perhaps off topic, but it would be good to know that ENTs and audiologists for the most part know very little about tinnitus. In fact, they cause a lot of tinnitus with some of their outdated testing procedures which are not only ineffective and unuseful, but very dangerous to someone with sensitive ears.

Could you point me toward that account please? (I'm interviewing people about medical error.)

 

[gm286]

Hello everyone. I just had a couple questions to anyone who read Cort's latest CCI article.

Has anyone looked into the Regenex procedure for lax ligaments? It seems that somewhere he had seen someone mention it. It links to a page on CCI discussed by M.D Christopher Centeno. Aside for the fact that the page looks somewhat commercial ("Talk to an Expert" + 855 number in red at the top right), has anyone looked into it closer to form any interesting opinion? Centeno only does the apparently difficult but less invasive procedure in Colorado.

Other questions: has anyone with CCI had their symptoms improve with an approach that is non-invasive? I am not asking for advice on manual traction or physical therapy which I will not go anywhere near. I'm talking about anything on the ME/CFS and/or CCI spectrum of approach already established such as immune therapies, supplements, daily habits or things to avoid.

I received a "revised summary" of my consult with Dr Gilete. He added toward the end that I was "neurologically healthy" relative to other patients and that the risk versus benefit procedure of the surgery was thoroughly discussed. I see this as a method of protecting himself from having his reputation damaged at any point in the future if his surgeries failed the patient for any overt or nuanced reason.

I have had my energy levels, "cognitive stamina" and neck issues be relatively diminished over the last month with a hard look at daily habits. Being in low-oxygen environments and being potentially sensitive to electro-magnetic fields, I've looked at ways to reduce symptoms from these kinds of triggers.

I've been trying high dose B6 supplementation (250mg, partner requires it, so I'd borrowed the leftovers of his yearly "cure") to try and see how and felt. I have had a long history with smoking (tobacco) so I am trying to reduce that. It's just that nicotine has literally been one of the best remedies for the brainfog/fatigue I get. After considerable physical exercise, the following day when my state does predictably worsen from that, the nicotine from a cigarette will almost immediately abate the brain fog.

Exercise (aerobic, think a body combat group class by Les Mills) helps my vision issues. Floaters/other eye problems are reduced for a while after the workout. I have a stubborn eye problem where too long an exposure to blue light (laptop screens or TV screens usually) makes two small grey spots near the center of my vision apparent (one in each eye). I have had Lasik surgery done in the past except can't remember or tell if they had caused the eye spots.

If anyone has had good experiences with their CCI or ME/CFS in these contexts, it would be nice to hear some feedback. Hope everyone is doing well.

 

[GypsyGirl]

Has anyone looked into the Regenex procedure for lax ligaments? It seems that somewhere he had seen someone mention it. It links to a page on CCI discussed by M.D Christopher Centeno. Aside for the fact that the page looks somewhat commercial ("Talk to an Expert" + 855 number in red at the top right), has anyone looked into it closer to form any interesting opinion? Centeno only does the apparently difficult but less invasive procedure in Colorado.

I've been following "Janelle's Medical Journey - keeping her head on!" on Facebook - she's documenting her experience with the Regenexx stem cell procedure with Dr. Centeno, and is having some success with it. Her case seems a little unusual to me (compared to a typical cervical instability onset). She was dx-ed with and had surgery for Chiari. The surgery for Chiari removed a HOXD3 congenital defect (where C1 fuses to your skull), and the removal triggered instability. (The defect ITSELF was stabilizing, the surgery cutting through the muscles/ligaments/bone that had compensated instability triggered further instability, and her docs think she has Ehler Danlos or another connective tissue disorder even further contributing to instability.) I certainly don't know all the details, but suggest joining the page so you can follow along, search for questions, and ask if you have more questions. There are a few other people who have tried or are trying Regenexx that I see pop up in my EDS groups so she's not alone in trying this - the clinic seems busy, but Janelle's page has the most info on it.

 

[Gingergrrl]

Thanks much for the update @jeff_w. Just wanted to mention, this is HIGHLY inappropriate to do on anybody, whether or not they've had fusion surgery. Have you thought about reporting this person? You simply do not do something like that without first warning or asking the person you're working on.

I agree, this is horrific and very scary and I hope you can report this person @jeff_w for the damage that she caused you.

Could you point me toward that account please? (I'm interviewing people about medical error.)

@ScottTriGuy Will all these stories and interviews that you collect all be in a blog or podcast that we can read or listen to in the future?

 

[ScottTriGuy]

@ScottTriGuy Will all these stories and interviews that you collect all be in a blog or podcast that we can read or listen to in the future?

Yes, soon hopefully, I almost have the website ready then I can start releasing the podcast interviews. I doubt I will have the time / energy to type out the interviews though, so audio / video only.

 

[Wayne]

Could you point me toward that account please? (I'm interviewing people about medical error.)

Help and Advice — Tinnitus Worse — Original Cause Ear Syringing — Microsuction Made It Even Worse
You'd probably be interested in this as well -- 1 Year After Ear Tests... cVEMP/Caloric
You may find some of these thread titles interesting: -- TESTS
Newspaper Article: -- Ear syringing unsafe and doesn't work, health chiefs warn

Hey @ScottTriGuy,

I applaud your efforts to make rampant medical errors more widely known. I continue to believe one of the most dangerous things we face is when we seek out health care assistance, and end up with somebody who's naive and/or uncaring about the dangers their therapies present to a lot of people. -- In that regard, I've read numerous testimonials on this forum from people who've gotten ME/CFS following some kind of vaccination(s).

I've also read reports of people getting ME/CFS from the fluorquinolone class of antibiotics like Cipro and Levaquin. I'm mentioning this because they way too often have devastating impacts on the connective tissues in the body (which if I remember correctly, make up about 1/3 of our body weight). As such, it would appear (to me anyway) fluoroquinolones sometimes almost assuredly actually cause CCI/AAI.

The link below will take you to quite an extraordinary account of a healthy young man of 30, who was quickly turned into an invalid by Cipro (I got the impression he could die at just about anytime). It's a heartbreaking story, but well worth the read, as it will give an idea of just how much damage these abx do to many people.

CIPRO IS POISON!

P.S. -- The format of this website is terrible (white letters on black background). I reformatted it, and could send it to you in a PM if you're interested (or anybody else).

 

[GypsyGirl]

Other questions: has anyone with CCI had their symptoms improve with an approach that is non-invasive? I am not asking for advice on manual traction or physical therapy which I will not go anywhere near. I'm talking about anything on the ME/CFS and/or CCI spectrum of approach already established such as immune therapies, supplements, daily habits or things to avoid.

I posit:
Maybe CCI or other cervical instabilities can be managed or improved (not sure which!) with non-invasive methods, if the instability is not severe and there are adequate compensations in place, or you strengthen the compensations in place.

This seems to be what EDS specialist neurosurgeons suggest to cases not severe enough to warrant surgery, right? To do PT and strengthen the compensations until/unless the compensations fail and surgery is necessary. Whether these methods can heal the instability permanently and to what degree, I don't think anyone knows what's safely applicable at this time.

Based on my own experience and what I'm reading in forums, it's hard to tell which methods are improving symptoms or improving instability. It's important to know what's being measured to ascertain what is important and how. Ie, perhaps strengthening muscles could reduce symptoms in some, who will then think it helped instability because symptoms improved, but the method didn't help decrease instability, it helped compensate for instability and the instability is the same.

It's a challenge compounded by medical practitioners who don't understand or acknowledge cervical instability, causing many people to be under or misdiagnosed. Especially people with milder symptoms who may never know they have cervical instability and so - if they are finding improvement (or total resolution), they're likely to report it (if at all) under a different diagnosis making it harder for others to follow in their footsteps.

The non-invasive methods I see often includes things like:
1) the Cusack protocol, a combination of supplements to help strengthen connective tissue (It's worth noting that supplements outside of this protocol can affect collagen; people's results vary and do not need to be limited to this.)
Fb group for EDS & Cusack: https://www.facebook.com/groups/edsandaloe/

2) the Muldowney protocol (The only physical therapy protocol available at the moment with EDS-ers in mind. Focuses on strengthening the SI joint first, the order of exercises was meant to be used as a foundation to which EDS-ers tend to respond best. Warns against manual manipulation or releases unless you're actively strengthening the body part, otherwise it's not likely to hold the adjustment.)
Kevin Muldowney PT book, complete with pics & descriptions of exercises: https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880
His website, with some video webinars: http://www.muldowneypt.com/
A facebook group (not directly affiliated with him): https://www.facebook.com/groups/870934356277800

3) manual manipulation by a very knowledgeable, careful physical therapist (Perhaps obviously for this thread, manipulation can carry risks, especially for the cervical spine, especially if you have connective tissue laxity.)

4) manual manipulation by an osteopath or chiropractor (Same risk warning as above. Atlas Orthogonal, NUCCA, and craniosacral are mentioned often as useful techniques - the first two are upper cervical chiropractic techniques, low velocity adjustments that don't take the person out of ROM or "twist, crackle, pop" as typical chiropractic adjustments do. The latter is a hands-on technique used used by many kinds of practitioners - osteopaths, massage therapists, chiropractors.)

5) occupational therapy adaptions (ie, Use ergonomic support at home, at the office, in your car, in bed. Support your body foundation so you're using your muscles well, supporting your bones, and not stressing or overstretching your ligaments.)

If you consider anything not surgery to be non-invasive, then we could add:
6) prolotherapy (injection of an irritant solution to tighten ligaments)
7) platelet rich plasma/PRP (injection that contains growth factors that help repair ligaments)
8) stem cell therapy (injection of stem cells to tighten & repair ligaments)


Some people are reporting some improvement using these above methods on forums, but it's hard to assess how much improved, and how severe their cervical instability was/is because of the factors I mentioned above.

Of non surgical techniques, Janelle is having some success and documenting her experience with stem cell therapy and instability at: https://www.facebook.com/groups/308026379766495
The Cusack family (of the Cusack protocol) note that some of their symptoms included tethered cord and Arnold-Chiari, common co-morbidities of CCI/AAI, but their website is sparse (and doesn't clarify if they had these diagnoses, or had the symptoms without diagnoses). https://ouredsjourney.weebly.com/story.html

For myself, I had gentle upper cervical chiropractic years ago which appeared to correct my (then mild) instability symptoms and help restore some cervical lordosis temporarily. It definitely helped manage/decrease symptoms. I can't conclude if it helped heal OR damage my ligaments, as I don't have enough information to draw a conclusion. I have been refusing manipulative care until I have the appropriate imaging for EDS & cervical instability. A good evaluation would: 1) confirm a diagnosis and I'd be more likely to share my experience & what works for me as it'd be more likely to help others within that definition, 2) help me establish a baseline so I have comparison as I try non-invasive therapies, and 3) help inform the safety and likelihood of success in therapies.

I can't sit or stand upright for long, but I'm working with an EDS knowledgeable physical therapist familiar with the Muldowney protocol and do physical therapy, floor exercises only, never pushing past pain or ignoring the necessary recovery for PEM. (This doesn't hurt me or exacerbate symptoms as long as I work within my limits.) I do a lot of bracing and ergonomic lifestyle adjustments. I'm researching reputable sources for supplements appropriate for collagen stimulation/regeneration, but haven't added anything new because frankly, reputable supplementation sources are hard to find, and supplements are expensive. I must go piece by piece (seeking how a supplement breaks down, how it must be absorbed to be effective, if my genetic quirks could prevent absorption, how some studies slightly related could play out for a different scenario, etc etc). Practicing mold avoidance appears to greatly reduce my overall laxity.

I dunno if that answers your question well, but it surely answers it long. Those are my notes as I seek better answers. Hopefully others will chime in and add or correct me.

 

[gm286]

@GypsyGirl Your response is exhaustive and thorough... these words don’t even begin to do your response justice. You are a Godsend. I will pick apart and research every, to most of all, of the points in your list.

We are lucky to have you!! I just can’t believe how well people are able to compile information like this and how precisely, at that. It just seems to me like gathering resources and mobilizing help in such obscure/poorly established areas of health is unlikely. Maybe it’s because I haven’t much to expect where I live right now. But this is so full and it almost makes me want to keep an open mind about physical therapy/EDS knowledgeable manipulation even though Dr Gilete suggested I avoid neck manipulation. Maybe he just assumed most people would not understand CCI.

Thank you a million times and thanks to everybody on this board who’s been a voice for this issue. Honestly, it just lights me back up!

 

[GypsyGirl]

@GypsyGirl Your response is exhaustive and thorough... these words don’t even begin to do your response justice. You are a Godsend. I will pick apart and research every, to most of all, of the points in your list.

We are lucky to have you!! I just can’t believe how well people are able to compile information like this and how precisely, at that. It just seems to me like gathering resources and mobilizing help in such obscure/poorly established areas of health is unlikely. Maybe it’s because I haven’t much to expect where I live right now. But this is so full and it almost makes me want to keep an open mind about physical therapy/EDS knowledgeable manipulation even though Dr Gilete suggested I avoid neck manipulation. Maybe he just assumed most people would not understand CCI.

Thank you a million times and thanks to everybody on this board who’s been a voice for this issue. Honestly, it just lights me back up!

I'm so glad it's useful! I read all 50+ pages of this thread and didn't see a compiled list for common non-invasive treatments mentioned elsewhere. Please do research and share your findings and experience. What I've found is built on what others have found (professionals and laymen), and will surely have addendums.

To be clear and not mislead anyone, I'm not advocating neck manipulation, per se, and certainly not on its own for someone with instability or a connective tissue issue. (I wouldn't want to sway you from well founded advice; having listened extensively to Dr. Gilete's lectures, research, and feedback, I know he's a top neurosurgeon in these issues, and respect his work and opinions enormously.) I'm voicing what others say in forums are sometimes-useful non-invasive treatments, my personal experience, and offering searchable info so that one can make informed risk assessment with available information taking into account their particular constellation of symptoms.

Neck manipulation will always carry a higher risk than other manipulations because of the position of the vertebral artery. Vertebral tears are rare in the general population, and connective tissue issues will increase the risk of vertebral tears but there's not clear info about how much riskier it is for someone with connective tissue issues. Untreated Chiari in particular has a definite absolute contraindication for neck manipulation (so be sure to confirm you don't have it). Aside from the big scary warnings, neck manipulation simply isn't as likely to help if you're not actively strengthening the muscles in the area (per Muldowney) to compensate for ligamentous laxity, so the adjustment would have less chance of holding.

Even though what I want more than anything right now is for someone to just POP MY NECK BACK IN (I have the distinct and terrible sensation of a twisted neck), I'm refusing cervical manipulation. I know that my best chances are to slowly work through the Muldowney protocol, starting with my SI joint, until I'm strong enough to work on the neck muscles.

In the meantime, I'm working on getting the correct imaging (a rotational CT or MRI for my rotational symptoms) for my symptoms as someone with EDS, and sending to a knowledgeable neurosurgeon. I don't have a diagnosis of cervical instability, haven't found anyone in my area that tests for rotational instability, and realize I need to get an idea of exactly what's wrong and to what degree something is wrong before I move forward. Gather data about all treatments available. Use good sense, troubleshoot what might not work. Accept there are risks with any treatment I can't possibly anticipate. Support my body the best I can in this state. Try not to do more damage.

When I can strengthen the neck muscles, and IF my instability is nonexistment-to-moderate, and because I respond without symptoms to working on my own neck trigger points while lying down as long as I don't turn my head to the side, then I will be open to starting VERY gentle, precise chiropractic (discussed in advance) while supine - because the data I've gathered supports this as a possibly-useful thing with minimal-moderate risk when strengthening the neck muscles in tandem. Oh, and I may try taking collagen boosting supplements or diet adaptions and see if I have any luck there, again, to increase the chances of the adjustments holding. Changing any major factor could change my opinion about my next steps. What's the saying... "Nonetheless, she persisted"?

Many well wishes to you. PR was the first community for chronic illness I ever joined, back in 2013 soon after my onset of ME/CFS. Following the research posted here, and listening to others' experiences helped me better conceptualize and theorize the mechanisms of my illnesses and adapt accordingly.

And like you, it lights a fire in me to fight and share. To never, ever, ever give up because each person searching is another chance to find a better answer - some days I appreciate that even more than sensible advice.

 

[Strawberry]

Oh, and I may try taking collagen boosting supplements

Does this actually work? My foster daughter has been trying to talk me into this. My daughter is taking it now too.

 

[ScottTriGuy]

It's a heartbreaking story, but well worth the read

Indeed, and yes.

 

[talkinghead]

Does this actually work? My foster daughter has been trying to talk me into this. My daughter is taking it now too.

Afaik if you have EDS, collagen boosting supplements don’t really work. But I’m no expert.

 

[GypsyGirl]

Does this actually work? My foster daughter has been trying to talk me into this. My daughter is taking it now too.

Alas, I don't know yet, as I haven't dug into researching supplementation for collagen comprehensively. If it's useful to you or others, I'm happy to check back in and share sources/resources/opinions after I do.