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

[jeff_w]

I completely agree with this. As @jeff_w mentioned, I was recently told (by @jeff_w’s doctor) that I do NOT have CCI/AAI. However, the MRI did turn up several issues with my lower neck which both a local neck surgeon and physical therapist believe could be contributing to my symptoms and can be helped through PT and steroid injections. This doesn’t fit the theory of brain stem compression - which I’m really onboard with and hope gets much more focus and research - but could fit a broader theory of pinched nerves and compressed spinal cord messing with our symptoms.

I think the underlying cause is brainstem and/or spinal cord compression. In one word: Mechanical. Brainstem compression seems to be more common than "mere" spinal cord compression, but both of them disrupt the autonomic nervous system which, in turn, impacts the immune system, energy metabolism, etc.

Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis.

See the article above.

 

[toyfoof]

Thank you @jeff_w! This all makes logical sense to me and I’m so glad I stumbled into this thread and your website. I am going to start incorporating the word “mechanical” into my conversations about my disease.

 

[Hip]

From what I have seen, well over 90% have tested positive.

90% of over 20 ME/CFS patients tested have CCI/AAI?! That would be an astonishing percentage if it pans out to larger sections of the ME/CFS population.

Would you say that the ME/CFS patients who tested for CCI/AAI are representative of the general ME/CFS population? Or did some of these patients decide to test for CCI/AAI because they already had symptoms that made them suspicious they might have CCI/AAI (in which case they would not be that representative of the general ME/CFS population)?

Have many of these CCI/AAI-positive patients experienced improvement or resolution of ME/CFS symptoms under a neck traction device, as you did with your halo? Am I right in thinking that an MRI scan finding CCI/AAI deformities and instabilities is one thing, but to confirm that these deformities are actually causing symptoms requires neck traction device testing?


Is it mainly just CCI/AAI that has been found in these 20 ME/CFS patients tested, by the way, or do some have Chiari malformation (which I understand can often co-occur with CCI/AAI), or other similar issues like cervical spinal stenosis, syringomyelia or tethered cord?


Have you communicated your findings to any of the leading ME/CFS researchers or doctors? I am sure Ron Davis would be interested for one. Especially if you can send documented evidence, such as these fascinating MRI images like the one posted above by @debored13.

But if it really is 90% of ME/CFS patients who are testing positive for CCI/AAI by MRI, why wouldn't this have been discovered before? Is it simply because CCI/AAI does not show up that well on regular MRI scans?

My ME/CFS began with an acute viral infection. This appears to be true for the vast majority of others with ME who ultimately tested positive for CCI/AAI.

It may in fact be that CCI/AAI that makes a person unable to clear a virus, given that the brain stem regulates the autonomic nervous system and the immune system. So what appeared to have been a viral cause, may not actually be one.

That's certainly a nice theory. I have often wondered whether autonomic nervous system (ANS) dysfunction might be behind the apparent inability of ME/CFS patients to clear their chronic viral infections. Papers like this one and this one show that the ANS plays an important role in immunity.

So you are suggesting that a pre-existing CCI/AAI might be like a ticking time-bomb, just waiting for the time that an ME/CFS-associated virus comes along, and when it does, the compression that the CCI/AAI places on the brainstem inhibits immune function, so that the virus cannot be cleared.

This does sound plausible, especially in the case of enterovirus, which is known to travel along the vagus nerve from stomach to brainstem, and then infect the brainstem. This viral brainstem infection might itself cause a volume expansion of the brainstem due to inflammation, which might not be a problem unless you happen to have a pre-existing CCI/AAI, which would then block the expansion and cause brainstem compression.

In other words, perhaps brainstem compression might arise from a combination of a pre-existing CCI/AAI and a viral brainstem infection.


But didn't you say that once you were put under neck traction using a halo, your symptoms improved rapidly (ie, almost immediately)? I am guessing such a fast improvement might be too quick to be explained by an antiviral response from the immune system, because viral clearance when we have a cold or flu takes days or weeks.

Though I can imagine that a reduction in immune inflammation could occur pretty quickly, so maybe the release of pressure on the brainstem had immediate effects in reducing inflammation, which in turn led to improvements in symptoms?

I think you also suggested that the incremental increases in halo traction force, applied by your neurosurgeon over several weeks, might have slowly improved your symptoms over those weeks? That timescale of weeks I guess would be commensurate with the timescale of the antiviral immune response.

 

[dreampop]

I think the underlying cause is brainstem and/or spinal cord compression. In one word: Mechanical. Brainstem compression seems to be more common than "mere" spinal cord compression, but both of them disrupt the autonomic nervous system which, in turn, impacts the immune system, energy metabolism, etc.

Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis.

See the article above.

Hey Jeff,

So what does having the fusion actually feel like? I mean can you feel it in your neck? Can you not turn your neck 90 degrees or sleep on your side or stuff like that? Are you limited turning your head up and it just won't go or feels wrong or something?

 

[dreampop]

That would be an astonishing percentage if it pans out to larger sections of the ME/CFS population.

Well, from what I have seen there has been a sub-population of patients and the occasional doctor that have self-selected this testing based on symptoms or instinct. But that does not mean others don't have it. Either way is astonishing. 20 on a forum of this size (frequent users are much smaller than total users and they are the ones who would dig into a thread like this) is more than I have seen almost any other co-diagnosis with the exception of POTS/OI, MCS, MCAD and maybe ED. But remember that is over many years and this is like, 6 months. Even stuff like peripheral neuropathy you don't see 20 new diagnosis in that time frame. And it's even more remarkable because the testing is done through a few centers/doctors.

It will be interesting to see if others recover as well as Jeff, I think that will be a very important aspect on this and we need to be patient to give people a long time after surgery to feel things out.

 

[Gingergrrl]

I was laughed out of a cardiologist's office bc he said he was not a doctor for dysautonomia, yet he is the guy you have to see to get a TTT.

I am sorry to hear this and I saw three Cardios (in 2013 & 2014) and one was supposed to be a dysautonomia specialist but none were able to help me. The specialist was a very nice man but was still not able to help me. It took me YEARS to find the right doctors and treatments. Once again, dysautonomia (like ME/CFS) is sort of in no-man's land and does not belong to one specialty (although the rare Cardio or Neuro does understand it).

I have terrific health insurance this year and can't get the help I need in spite of it.

This is such a bummer and maybe with your new insurance you can find a hospital or outpatient clinic that does tilt table testing. Sometimes Dysautonomia International has good referrals (sometimes, not always ).

 

[Inara]

Dear @jeff_w, your MCAS developed after your ME started, right? Would it speak against craniocervical issues if it developed before the rest came?

 

[roller]

anyone remembers these "torture cast beds" for children, some 50 years ago? woah, they were hugely in fashion, to everyones horror. children were thought to be doomed without. same with that petrie casts, though those children were to small to understand what was done to them.

in general, having parts of the body immobile (by accident, disease) is known to cause trouble.

the skeleton is like a 3d-puzzle, that is made to function from all angles. if has grown over decades, and adjusted gradually to the body size. now, on top of the puzzle a disk is pulled, or fused.

apart from muscle atrophy, the whole weight distribution is changed. where there have been two discs with a buffer, there will be only one big one, right? is this disk reduced in size or will it pressure more heavily down on the rest?

i cant imagine, this procedure goes without major backlash in the mid-term. this may be wrong, and of course untreated me/cfs doesnt make one better either.

very likely, the first bionic eye from a 3d-printer will be implanted soon.

it should be easy to print perfectly adjusted (barely visible) collars, or something similar for the bones/spine. just something better than to fuse disks. in light of the advances in 3d-developments, the procedure appears from the stone ages.

 

[mattie]

apart from muscle atrophy, the whole weight distribution is changed. where there have been two discs with a buffer, there will be only one big one, right? is this disk reduced in size or will it pressure more heavily down on the rest?

Agreed. Changing original body parts or structures is almost never a good thing. That even goes for simple dental procedures.

untreated me/cfs doesnt make one better either.

Untreated CCI / AAI can end you.

it should be easy to print perfectly adjusted (barely visible) collars, or something similar for the bones/spine. just something better than to fuse disks. in light of the advances in 3d-developments, the procedure appears from the stone ages.

Personally: If I have even the smallest chance of getting out of this misery by fusion surgery I would not hesitate for a second. And I would not want to wait for alternative / better / newer options either. Surely it depends on how sick you are. I currently have no life.

 

[roller]

If I have even the smallest chance of getting out of this misery by fusion surgery I would not hesitate for a second.

this is the point. for how long getting out of the misery and could that surgery beam you on another doomed track?

is it really unlikely, that in the following even more disks slip?
why did they in the first place?

 

[roller]

spine surgeries are/were common.
i can only memorize little anecdotal info, and think they were 99.9% fails and are avoided by all means today?

 

[Malea]

Have a couple quick thoughts— a) could brainstem compression have a role in mold sensitivity? I’m not sure what I’m reacting to in my house is mold, but I have been feeling awful inside and needing fresh air, which does seem to make a big difference. I’ve felt better with outdoor air for awhile but I haven’t felt this awful inside until the past month or so. I know Jeff remarked on brainstem compression causing mcas. I’m not sure that mold sensitivity is limited to a mast cell reaction, but then again I’m not sure what I’m reacting to is mold. I have worsened cognition and an extremely strong feeling of dyspnea inside, and literally crave fresh air (unfortunately it’s sub zero degrees atm).

Not an answer to the question..but: I had this symptom (always craving fresh air, inability to be in rooms/ cars for longer times without window open) for the last 10-15 years! I‘m not totally convinced, though, that it is (in my case) only related to mold. It feels more like I can never get enough air... and that worsens in closed spaces with bad air, so I immediately have to open a window to have „enough“ air.

 

[mattie]

spine surgeries are/were common.
i can only memorize little anecdotal info, and think they were 99.9% fails and are avoided by all means today?

You think that? Better to check the facts. This is simply incorrect. Spine surgery saves many lives.

 

[Binkie4]

@mattie
Have you tried a Philadelphia collar? As an interim measure.

 

[mattie]

@mattie
Have you tried a Philadelphia collar? As an interim measure.

I am currently trying an Aspen Vista collar. Was a bit easier to find here and has adjustable size.
I find it helps prevent too much motion, but can't really say that it helps with symptoms yet.
I think Philadelphia collars provide a bit more traction.

From: https://www.instabile-halswirbelsaeule.de/cervical-brace/ :

Cervical braces or collars are a very controversial subject for doctors. A permanent usage of collars leads to atrophy of the muscles and therefore to more instability.

Cervical collars shouldn’t be a permanent solution. BUT in some cases, especially very severe cases of instability, collars may be necessary to cope with everyday life or to avoid permanent damage to nerves or the spinal cord.

CCI patients often have problems with sitting in a car. Every bump, ever pothole, can lead to severe symptoms. Also riding the bus or train, pretty much every kind of abrupt movement can be difficult. Especially in those situations cervicle braces give security and may avoid worse.

Collars can be useful on days with very bad symptoms. They can reduce symptoms or don’t even let them come to their full extent.

It is important to still train the muscles if possible. This will reduce or avoid muscle atrophy.

Sometimes it is necessary to wear the neck brace at night for sleeping. It has the purpose to avoid involuntary movements and on the other hand stabilizes the neck while the muscles are not really working themselves.

Some neurosurgeons use neck braces for diagnostics. It can help to predict whether a fusion surgery is helpful or not. The patient has to wear the neck brace 24/7 over a prolonged period of time. If the symptoms get better or even disappear it is much likely that the patient will approve with fusion surgery.

Neck braces can be prescribed by doctors.

It can be very helpful to try different collars and see how they fit before buying one, because having a wrong size can lead to more harm than good. There are a variety of different manufacturer. Some popular brands of hard collars are Philadelphia, Miami and Aspen.

I will definitely wear the collar next time I have to travel by car.
Long before I got ME I started to get more and more symptoms driving my motorcycle, later also driving my car, than also bicycle, train and eventually with normal walking as well. At that point I had full blown ME-CFS and became mostly bed/couch bound.
Car travel crashes me every time now. Still recovering from trip to MRI in Germany.

 

[gm286]

Car travel crashes me every time now. Still recovering from trip to MRI in Germany.

Same here. Trips by car or plane really don't help. I'd add that long periods where I am seated upright at a desk and in front of a screen make me much worse. I hope the collar will help you out.

 

[Hip]

Well, from what I have seen there has been a sub-population of patients and the occasional doctor that have self-selected this testing based on symptoms or instinct. But that does not mean others don't have it. Either way is astonishing.

Definitely astonishing!

If the ME/CFS patients have self-selected themselves for CCI/AAI MRI testing, based on symptoms that make them suspicious they might have CCI/AAI, then that will not be a pure random selection of ME/CFS patients; so perhaps the prevalence of CCI/AAI in the general ME/CFS patient population will not turn out to be as high as 90%.

But even if the prevalence were just 30% of the general ME/CFS patient population, that would still be an absolutely remarkable finding, and potentially of major importance to ME/CFS research.

Of course a lot hinges on whether the CCI/AAIs discovered in these 20 ME/CFS patients tested so far are actually causing their symptoms. If I understand it correctly, it requires neck traction to see if a CCI/AAI is causing symptoms (if the patient's symptom abate under neck traction, then it's assumed the CCI/AAI is causing them).


Absolutely brilliant work by @jeff_w in bringing this all to light.

 

[gm286]

Of course a lot hinges on whether the CCI/AAIs discovered in these 20 ME/CFS patients tested so far are actually causing their symptoms. If I understand it correctly, it requires neck traction to see if a CCI/AAI is causing symptoms (if the patient's symptom abate under neck traction, then it's assumed the CCI/AAI is causing them).

This is more or less spot on: one of the doctors who works with Dr Gilete actually mentioned during my meeting that patients may opt for the collar and try for themselves over a stretch of time. If the symptoms abate, then it is considered that CCI/AAI symptoms would be abated after surgery. The contra-indication for the collar is that over a long period of time it may also atrophy the muscles in the neck -- which as it turns out are working double time to support the weight of the head in lieu of the weak ligaments/connective tissue.

I am thinking of emailing the secretary and re-considering this option (to choose to wear a collar). That way at least I am clued in that some of my symptoms (cognitive mostly) are caused by the CCI. I just can't see myself wearing the collar at all times, so it is a somewhat rough way of knowing how much of an impact CCI is having on our well being.

 

[Rlman]

@roller i think in the consent form of the CCI/AAI surgeons there is a point that after doing fusion surgery, there may be a need later on of fusion surgeries of lower cervical vertebrae. many on the BTM group have to have more fusions after doing the fusion for CCI. The explanation i think is that the fusion causes extra force on the lower cervical vertebrae and they end up becoming unstable too. maybe even the lower spine ends up needing fusions too. not everyone on the btm group needs more fusions though.

 

[wonderoushope]

The main point of contention is that most neurosurgeons believe CCI can only happen after a physical trauma, such as whiplash or a high-impact trauma.

Would something like a chair being pulled out from you “as a prank” and you hit a hard wooden floor be classified as high-impact trauma? This happened to me as a teen and I feel that’s where all my back pain issues really started. I get neck, lower, middle and upper back pain.
I suffer from headaches and migraines and different things trigger them, but I usually know when my migraines are coming from a sore neck, as it runs down my lower neck to the back of my head.

Did you suffer from headaches and/or migraines?