The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

Cancer cure is a tricky word, complicated by the fact that many of the treatments for cancers are prone to cause secondary cancers. There are a few exceptions. Basal cell carcinoma would be one, though you can be prone to have more popping out throughout the years. However once removed, it is not likely to come back.

 

Hello, @Michiel Tack -

You've compiled and synthesized an impressive amount of information here. Well done!

I'm going to add my own thoughts to the information you've presented here, piece by piece.

It is true that this surgery limits a patient's range of motion by roughly 30%. That being said, I can comfortably turn my head side-to-side, well enough to drive, and I have nearly perfect up and down range of motion while nodding my head. Most days, I forget that I'm fused.

Compared to years of POTS, PEM, and being bedridden, this modest reduction in range of motion is an extremely acceptable tradeoff.

I was under anesthesia for 7 hours, and I did not experience the post-op pain that Mattie did. Experiences will differ somewhat.

Overall: Recovery from a fusion surgery may be slow, and yes, it may last several months. But compare a several months recovery time versus spending a lifetime with ME, with very low odds of recovery. I'd much prefer several months of recovery vs decades with ME.

Indeed, all of those complications can and do happen. This is why I am very clear that I can only recommend 4 neurosurgeons in the world at this time. The 4 that I recommend are true specialists and have the very lowest of complication rates. I cannot, in good conscience, recommend that people have this surgery done by other neurosurgeons. I look forward to the day when this changes.

A rib harvest is an outdated method of providing bone grafting, for this very reason of protracted pain. Currently, Dr. Henderson and Dr. Bolognese use a superior bone grafting technique that does not require harvesting from a patient. In short, this concern you listed here can be eliminated.

The most advanced fusion technique to date does not use a suboccipital plate instrumentation. And so, patients with the advanced condylar screw fusions do not have this problem. In short, this concern you listed here can be eliminated.

You are correct. But you should note that my experience of infection was not typical. It was due to my uniquely extenuating circumstance: I went into my fusion surgery after spending 4 months in a halo brace.

My neurosurgeon warned me that I was at a greatly increased risk of developing a post-surgical infection due to having been in a halo and unable to fully bathe for 4 months pre-operatively.

I'm only one of two patients, out of thousands, to have been in a halo brace prior to a fusion. A halo brace prevents a patient from being able to shower at all. I had to subsist on sponge baths, which do not provide the best hygiene, to say the least.

Again, infections are not the norm and can be prevented with: 1. Good hygiene (which wasn't possible in my unique circumstance) and 2. The administration of a peri-operative antibiotic. In short, this concern you listed here can be nearly eliminated.

Correct, though once again, you need to note the context. 1. My physical therapist did an entirely inappropriate maneuver for a fusion patient. Most PTs would not do this. 2. My fusion screws were rendered more vulnerable to coming loose from her maneuver due to my initial infection.

Again, most patients will not get an infection (no pre-op halo), and their fusions would therefore be much more likely to hold sturdy, even if subjected to an inappropriate PT maneuver.

In short, this concern you listed here can be nearly eliminated.

This is indeed true for many people. However, my insurance covered it.

Nearly all major insurance companies in the United States can cover it. It is an absolute injustice that healthcare is out of reach for most people.

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I cannot, in good conscience, post this type of disclaimer -- because I believe it to be inaccurate.

Once again, I cannot in good conscience post this type of disclaimer -- because I believe it to be inaccurate.

Costing "tens of thousands of euros" is correct in some jurisdictions.

Aside from that one point, the rest of your statement is misleading. The complications you're detailing are not common when one enters the pre-op state with good hygeine, and when one chooses a highly-experienced specialist neurosurgeon.

So, once again, I cannot in good conscience post this type of disclaimer -- because I believe this to be misleading.

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Overall, @Michiel Tack, I appreciate the time you've taken to advance this discussion forward.

 

Thanks for the work you put into this @Michiel Tack . Noticed that you seemed to have used ICC many times throughout when I think you meant CCI.

 

I agree that there is much uncertainty about the significance of the finding that 90% of these ME/CFS patients have CCI/AAI.

Even if we assume these patients genuinely have CCI/AAI, it's not clear if the CCI/AAI might be a cause or consequence of ME/CFS. I guess this can only be known for sure if the ME/CFS disappears after CCI/AAI surgery. Although I understand neck traction is another way to test whether the CCI/AAI detected on MRI is actually causing symptoms.

In fact I think I read in one of Jeff's posts that one of the CCI/AAI surgeons now only offers surgery if the MRI diagnosis can be confirmed with symptom relief of neck traction.

Yes, I raised this question on the PR forum (see this post), but I am unclear of the answer.

There are different types of traction device, though: in the case of a Philadelphia collar (as Jen in wearing in this article), this places some traction on the neck, but leaves you free to move around, so I guess you will be able to exercise with that collar on, and will be able to perform a tilt table test or active standing test for POTS with the collar on.

 

There are a few things to consider. One is that the symptoms of any given neural injury can vary so much and seem so different case to case because of things we don’t know, like how the brain adapts to an injury.

The other thing is simply that many patients with other illnesses are not familiar with ME/CFS world or terminology. As someone with cci, I was curious about this, so I informally polled people in a group for people with chiari and cci. Many of them had indeed experienced ME/CFS like symptoms especially PEM/PENE but just didn’t know the specific terminology. Also many people with EDS are known to have fatigue, known to have POTS, known to have immune issues and even viral issues, and once you have so many diseases that may be explanations for you’re symptoms you may not look for another diagnosis. People talk about having to rest for a couple days after doing anything, many are bedbound or housebound, have severe fatigue and obvious brain fog, but may not be aware of what ME/CFS is. Despite the prevalence, it’s actually not very well known in the broader community of people who are ill, and the specialists in it are few ans far between.

. See above! But I agree it would be good if they did like David Systrom did and started publishing on This relationship.

I imagine maybe they will. But in my mind, the reason they may not have, is that they basically diagnose and treat people for something that is highly technical but also simple in a way —they’re smart but surgeons are all pragmatic and focused on doing good surgeons. Of course they are interested in the interaction of cci with other illnesses to an extent, and publish a lot about symptoms, but if they had a patient they treated who had not had an ME diagnosis, but experienced fatigue and many of the other symptoms, and then went on to get a lot better, why would they necessarily leap to thinking “oh this person had this diagnosis that I am not at all an expert in” and retroactively diagnosing them? Hopefully the me/cfs specialist internists that have been working with these surgeons will have thoughts on this and want to publish however

 

Personally, and this is just me - I would never get substitute bone again for anything if I could at all avoid it. I went through 2 failures with different alternative products that delayed a repair by quite a long time. In my own case I would never agree that bone other than one's own is superior.
Maybe it's just my system and most others would find the substitute products work very well.

 

Thank you so much for taking the time and costs gathering this information that I guess a lot of us wanted.

It’s been a fascinating week and an eye-opener, but don’t know what to make of it? CCI must be a differential diagnosis that some ME-patients have in addition or develop? As a former road biker, you can’t avoid knocking the head in asphalt (with a helmet!) sometimes, and it makes you wonder just a little. Those knocks long ago, any trauma to neck, anything? Nothing indicates that then and there, nothing after all this years. Neck seems as good as it gets. But it makes you asking a question or two.

But that this has anything to do with ME? It’s kind of crazy that one disease suddenly is out of the world, when doing surgery for fixing another issue. That’s maybe not that rare, but more than anything fascinating. Happy for the ones improving and in general hoping these stories inspire someone in medicine to have a closer look (study) on patients with both conditions.

 

My worries are that lots of people with ME or CFS will worry they have CCI or worse, get misdiagnosed with it, get surgery and not have any sort of remission.

Conversely, I also worry about the exclusionary aspect e.g. those people had a real disease, but the illness suffered by people with a CFS diagnosis is just functional.

 

I really hope you’re wrong on the first part, though someone said there were already someone fundraising for surgery....? At the other hand, you just don’t do neck surgery if there is no cause for doing it. Or? Maybe that’s naive from my side.

But I have a hard time really picturing hordes of ME-patients “running” to clinics for neck surgery, and thank god for that.

 

I think the more likely outcome is if anything surgeons will become overly conservative with diagnosis, because they are now so overbooked , and that people w cci will get no chance at a trestment that may help them. But the more research covers this issue the more we can have both surgical and non surgical treasmtnets for everyone.

 

Maybe not hordes but a, not insignificant, number of patients had rituximab treatment when it seemed to be a promising, but still unproven, treatment option, so it wouldn't surprise me if the same thing happens here.

 

As always, I suppose this is going to come down to how scrupulous the doctors involved are. I was very surprised that some doctors were prepared to prescribe Rituximab to ME patients while trials were still underway (I know, I know, very naive of me). I'd like to believe that no surgeon is going to allow a patient to have surgery on their cervical spine unless there is a clear clinical need - but maybe I'm being naive again...

 

Yes, I clearly see the point and concern, just don’t think there will be many of them. If anything, ME-patients are well informed and hopefully quite cautious, even when the situation is horrendous and there is little to loose. Of greater concern could be surgeons willingness to do such operations. But that’s only speculation.

The example of Rituximab is definitely worth learning of, it has toxicity even in small doses, but the risk of neck surgery is far greater I believe.

 

spine issues may be a most common finding within the population - i strongly guess.
i understand @Jonathan Edwards suggesting in the jenbrea-thread, that the procedure may shortcut some (neuro?) circuits.
so, spine issues dont have to be the CAUSE but surgery may provide relief.

need to know how many healthy ppl have (the various) spine issues, without showing strong symptoms.

i read about the issue with hair transplants. own hair has to be "stored" in a certain solution, and this instantly reduces the "acceptance" by the body/skin. own hair is more likely to grow than donor hair. but when donor how grows, its as good as own. possibly the same as with heart transplants. there is always a immune-rejection, but possibly stronger with foreign material.
would be interesting to know what MEDs CCI patients got, with own transplants and donor transplants. and how long they have to take them.

what is mecfs ? what is cci ?
nothing is out of the world. many ppl have it more or less pronounced.
this makes wonder if we fall ill with a single pathogen or mostly only with combination thereof (+ perhaps some genetics, previously broken bones, concussions, previous diseases/vaccinations ...)

if ppl get helped, its good. if its caused by placebo effect - who cares, they feel better and thats what they wanted. jmho.
problem may be (long time) side effects of treatments. but what is the (long time) side effect of no treatment?

 

The example of rituximab shows us that even supposedly well informed patients can be desperate enough to try unproven treatments. My prediction is that while those surgeons who are established in performing this surgery might very well become more conservative with their diagnosis, the increased demand for this type of surgery will see more surgeons prepared to perform it - either through good intentions of helping people in need or through a desire to cash in on the extra demand.

 

I am probably being foolish, but is CCI diagnosed by scans, etc or by observing symptoms?

Is there then a variation in the neuroanatomical deficits that mean there are likely to be subclinical forms?

I understand the symptoms that over lap with ME relate to a knock on effect on the brain stem from the structural instability, I don't know if this is correct, if it is can this mean it possible that there are people with the neuroanatomical features that do not have the clinical symptoms that appear to overlap with ME?

[corrected typos]

 

this may be true for all medical treatments. this spine thing is just very "dramatic".

what about thyroid treatments ?
how many ppl get useless or harmful meds for it, how many get more intrusive treatments (surgeries) recommended ?

is this well thought-thru by the practioner ? is there anything "proven" ?

perhaps we just believe it.

how many fails do the thyroid-surgeries and -treatments produce ?
i could imagine the figures would be outrageous.

this doesnt make the spine-surgery "better", but what options does the desperate patient have at all ?

 

Yes, I think that is a good prediction. This last week raises so many questions and concerns, its almost like digesting a 10 course meal, I guess.

 

You are seriously claiming that there are no proven treatments?

 

i would say: YES
which ones do you consider proven ?

things for parkinson, diabetes or depression ?
its trial and error, patients get harmed and not helped very often.

the placebo-effect is one of the major successes in medicine - i could imagine.