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

[frozenborderline]

So I haven’t had my consult with Bolognese yet, but it looks like I’ve passed his entry requirements. According to @jeff_w , if bolognese dowsnt see anything , he simply sends a letter saying he can’t help you. But he wants me to have manual cervical traction and then follow up if I feel better from it. So it looks like Bolognese considered my imaging abnormal.

I am cautiously optimistic. Attaching an image of the part that looks most abnormal


I don’t know what the next year holds but I think this is a damn good start to a year I’m not sure if I would otherwise have been able to weather.
I’m also cautious about jumping into surgery *even though* my quality of life is horrendous. But I will feel so much better with having a diagnosis than not. Next project for me is to manage the horrendous symptoms and also to measure my Spo2 at night and see if it’s dropping a dangerous amount and thus whether that would point toward the less conservative option

 

[mattie]

Woke up this morning with an e-mail from Dr. Gilete's assistant.

Mr. .... meets clinical and neuroimaging international criteria for diagnosis of craniocervical instability (CCI)* and atlantoaxial subluxation(AAI).

Say what now?

After reviewing Mr. .... case, though further investigation is needed (Cinerradiology) and although surgery is the last option to be considered, we think that he could be candidate for:
Posterior fusion stabilization C0 to C2 (depending on further testing) with intraoperative reduction (traction)

I am in shock. Just wanted to rule this out as I never thought this would be it.

After more than 10 years of always changing vague complaints and 3 years of full blown mostly bedbound ME with severe POTS,
this could be it?
I have what Jenn and Jeff have?

Moving forward with personal consultation in Barcelona and Digital Motion X-Ray.

Feel like being in a Dr. House episode.

 

[jeff_w]

Congratulations, @debored13 and @mattie, on figuring this out.

You guys are #19 and #20 people with ME who have found out they had CCI/AAI. That's just this year alone.

Woke up this morning with an e-mail from Dr. Gilete's assistent.

Mr. .... meets clinical and neuroimaging international criteria for diagnosis of craniocervical instability (CCI)* and atlantoaxial subluxation(AAI).

I am in shock. Just wanted to rule this out as I never thought this would be it.

I keep hearing that people are shocked that ME could be caused by underlying CCI/AAI. But really, it completely fits. Brain stem compression from CCI/AAI disrupts the autonomic nervous system (POTS), the immune system, and energy metabolism.

After more than 10 years of always changing vague complaints and 3 years of full blown mostly bedbound ME with severe POTS,
this could be it?
I have what Jenn and Jeff have?

I also had full-blown, standard, bedridden-level ME for 3 years, including severe POTS.

Moving forward with personal consultation and Cinerradiology.

Excellent.

I had a full recovery after my surgery, as you know. I'm very much looking forward to hearing how others feel after their surgeries.

 

[mattie]

You are the reason I pursued the scans @jeff_w ! I cannot thank you enough for sharing your story.

You guys are #19 and #20 people with ME who have found out they had CCI/AAI. That's just this year alone.

20! In 1 year! That's incredible. I have 0 signs of hypermobility or Ehlers Danlos.
We need to keep track of this guys. This is significant!
Please post your scans/diagnosis/treatment outcomes in this thread:
https://forums.phoenixrising.me/ind...ai-mri-treatment-outcomes.62720/#post-1024609
We need to figure out just how large this subgroup is, and we need to track treatment outcomes.

 

[Gingergrrl]

We need to figure out just how large this subgroup is, and we need to track treatment outcomes.

This is something that a few of us have talked about privately but what do you guys think of a sub-forum to discuss CCI, AAI, Chiari, MRI's, and neck/cervical related issues? I have no authority re: this idea but am tagging @Sushi to see what the moderators think? I do not actually have CCI although I have severe neck pain for other reasons and it was very much worth getting an MRI to see what was going on (like possible stenosis, disc bulging, etc). I think it would be so helpful to have all of these threads in one section where people can read them and ask questions and right now these threads are scattered all over the place.

 

[jeff_w]

This is something that a few of us have talked about privately but what do you guys think of a sub-forum to discuss CCI, AAI, Chiari, MRI's, and neck/cervical related issues? I think it would be so helpful to have all of these threads in one section where people can read them and ask questions and right now these threads are scattered all over the place.

I am of two minds about this idea. On the one hand, it would be great to have a CCI/AAI section, for all of the reasons you listed. On the other hand, most people on this forum would never think they could have CCI/AAI, because it's such a new idea. And so, I can see most people passing right over a CCI/AAI subforum, thinking it wouldn't apply to them. Whereas, with these CCI/AAI posts scattered around Phoenix Rising, people are much more likely to stumble across this information.

I would be happy either way, as either approach has its benefits.

What are people's thoughts about the pros/cons?

 

[Gingergrrl]

And so, I can see most people passing right over a CCI/AAI subforum, thinking it wouldn't apply to them. Whereas, with these CCI/AAI posts scattered around Phoenix Rising, people are much more likely to stumble across this information.

That is an excellent point that I had not even thought of and I would not want anyone to miss the information. When I first joined PR in 2014, I only read certain forums that I thought pertained to me and had no idea about clicking "new posts" so that I could see everything new that was posted regardless of which forum that it was in.

I think for those who click "new posts" then they would see the posts on CCI (and still might skip them if they think that they do not pertain to them) or they might read them if they are curious, or if they happen to glance through all new posts. But for those who only check certain forums, then they would miss them if we created a CCI & Co sub-forum.

When I first joined, I did not read the forums about MCAS or Rituximab and never dreamed they would end up being two of the most important, relevant forums (in my case)! Versus I immediately read everything re: POTS and Dysautonomia b/c that was my first symptom that something was wrong (and then I started reading everything b/c I was so desperate to try to piece it all together).

I would be happy either way, as either approach has its benefits.

I agree.

What are everyone's thoughts about the pros/cons?

I'd be curious to hear others thoughts, too. I think even with a CCI sub-forum, a lot of posts would still end up other places, like they do for all other topics. I'm not really sure what is best and just wanted to post the idea since it's almost 2 AM here before I forget about it tomorrow

And congrats to @debored13 and @mattie for (hopefully!) getting some answers and treatment very soon. Each case is so unique and I think that is one of the main things I learned from posting here... to never give up hope.

 

[Binkie4]

As someone who stumbled across the information, I can confirm that I wouldn’t have known to seek out information about CCI. I do have some risk factors- hypermobility, mitral valve problems and a referral already made to a geneticist as well as worsening ME-but I would never have known the possible linkage to CCI. I am 71 and not seeking major surgery: maybe I will also learn something about conservative treatments. But at some point I may choose to seek out the relevant MRI. Good wishes to those already on their way.@mattie, @debored 13
@jeff_w- do we have information about how successful treatments have been for those on the forum diagnosed with CCI?

 

[rel8ted]

What are people's thoughts about the pros/cons?

I think @Gingergrrl made a terrific suggestion. It will help get the word out and give more access to people who had no idea it could be an issue. I think it could be a great alternative/companion to the BTM group which is very s_l_o_w to approve new members. I believe that we need better access to possible co-morbities and treatments bc who is going to advocate for us, except us?

Also, I have to admit that I was a bit skeptical at first, but I am rethinking an evaluation due to several factors including neck weakness, hypermobility, positionall neck stiffnes, pressure behind my eye, and a lovely kyphosis that I have developed. I also suspect I have POTS, but can't seem to find a doc around here that has a clue what it is.

 

[mattie]

I also suspect I have POTS, but can't seem to find a doc around here that has a clue what it is.

http://standinguptopots.org/learning/pots-symptoms
Have you tried the do ot yourself test described on this link?
Some docs find this test more valuable than a “real” tilt table test.

 

[rel8ted]

http://standinguptopots.org/learning/pots-symptoms
Have you tried the do ot yourself test described on this link?
Some docs find this test more valuable than a “real” tilt table test.

Yes, but that is not "acceptable" and I suspect my ME/CFS doc is going to want $600 cash to do a TTT. 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. Me knowing I fot the profile and a doctor putting that on paper are 2 different things, I'm afraid. I have terrific health insurance this year and can't get the help I need in spite of it.

 

[roller]

congrats to jeff, that you feel so much better.

despite supposed spine weakness, posture issues (...) in childhood, the back of my neck seemed from steel. not really very wide, but unusually massive. strong?

not long ago, i took sort of a acetyl-cholinesterase-inhibitor, high doses.

right after, the muscles become very weak, limbs are shaky. e.g. stretching out the arm max 45 degrees, otherwise it becomes too heavy. this is normal.
within some 60 minutes, all would recover quite well. neck seemed a little more troublesome.

two (?) weeks later, right after the dose, the neck "crashed" entirely. for the following weeks, i was unable to hold the head for more than 1 - 2 minutes, at best. i had to support the head with the hand.

it felt, as if there were null muscles anymore. and they had to be rebuild entirely from the scratch again.

any other major differences (neurological, speech, worse breathing...) i didn't notice.

i still find this pretty odd and would not have expected the most lasting and severe impact on the neck (particularly mine). my head is small and my brain little.

perhaps someone has an explanation, why the neck muscles would react that severe to acetyl-cholinesterase-inhibition and be that different to e.g. the legs - which have to carry the rest of the body.

just speculating. perhaps such an acetylcholine-imbalance could cause this sort of malfunction?

 

[frozenborderline]

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).

b) I’m still sort of interested in how this theory (mechanical ) works with the molecular or cellular level theories being developed. Fraser Henderson had some document that went over a lot of the details of this stuff and addressed how the mechanical injury can create differences in ion channels, etc, that may be part of the pathology of cfs

C) I had Lyme trigger my initial illness and hen I had a series of flu like viral infections a bout a year later that pushed me over another threshold I never got better from. In Jeff’s case the viruses normalized after surgery. But wondering if there are those who would have the infections come back and cause some kind of connective tissue issue again. We know that viruses and bacteria can produce enzymes that dissolve collagen. Wonder if there are pharmacological targets that oppose those enzymes , or something that does the opposite— a growth peptide or enzyme that stimulates collagen growth.
D) so what are the non surgical treatments? I am curious despite my low quality of life about exploring these before I commit to surgery. This would also depend on if I have serious breathing issues tho too Bc I can tolerate pain and discomfort, but want to make sure I’m not in risk of serious brain damage from apnea or hypoxia

Are there cutting edge treatments used to regrow collagen? Seems like something the beauty industry would be interested in, so maybe a more voluminous area of research than the research in me/cfs.

 

[frozenborderline]

I also have a friend who may have this issue that is new to the forum and still hasn’t been approved. She has tarlov cysts plus pots, dizziness, cfs, head slumps over, etc

 

[frozenborderline]

I am also aware of a couple other people not on the forum that I’ve spoken to that seem like strong candidates for this. So the anecdotal evidence is building.

 

[Hip]

Congratulations, @debored13 and @mattie, on figuring this out.

You guys are #19 and #20 people with ME who have found out they had CCI/AAI. That's just this year alone.

Very interesting. @jeff_w do you know how many ME/CFS patients have been tested for CCI/AAI or Chiari malformation and have had a negative result? I am just wondering what percentage of the ME/CFS patients that you know were tested for CCI/AAI were positive, and what percentage negative.


Is it worth starting a new thread which provides some details about each patient who was found positive for CCI/AAI (with the consent of each patient of course)?

It would be very interesting to know for example if these CCI/AAI-positive patients began their ME/CFS with the classic acute viral infection (typically a flu-like illness, gastrointestinal upset or sore throat), and whether they have high titers to the usual herpesviruses and enteroviruses associated with ME/CFS.

And are CCI/AAI-positive patients the rapid-onset types (ME/CFS appearing fast, within days of their acute viral infection), or gradual-onset types (ME/CFS appearing slowly and gradually over a period of months after their acute viral infection)?

And it would be interesting to see which particular ME/CFS symptoms they have, out of the all the possible ME/CFS symptoms. Like do they have gut symptoms/IBS, headaches, muscle and joint paint, brain fog, PEM, etc. I am just wondering whether CCI/AAI-positive patients display the usual ME/CFS symptoms, or whether they might have some symptoms which are more prominent or less prominent.

Like for example, might headaches be more prominent in those with CCI/AAI? And what about brain fog? I believe @JenB says she does not really suffer from brain fog, which unusual for ME/CFS. This sort of information might help characterize the CCI/AAI patient.



What do you think of prolotherapy as a treatment, @jeff_w?

Prolotherapy appears to be used for craniocervical instability and atlantoaxial instability — see this article and this article. Prolotherapy is simple and non-invasive: it involves injecting a sugar solution into the ligaments, which causes a local inflammatory response in those ligaments, leading to healing and strengthening of the ligaments.

 

[frozenborderline]

Very interesting. @jeff_w do you know how many ME/CFS patients have been tested for CCI/AAI or Chiari malformation and have had a negative result? I am just wondering what percentage of the ME/CFS patients that you know were tested for CCI/AAI were positive, and what percentage negative.


Is it worth starting a new thread which provides some details about each patient who was found positive for CCI/AAI (with the consent of each patient of course)?

It would be very interesting to know for example if these CCI/AAI-positive patients began their ME/CFS with the classic acute viral infection (typically a flu-like illness, gastrointestinal upset or sore throat), and whether they have high titers to the usual herpesviruses and enteroviruses associated with ME/CFS.

And are CCI/AAI-positive patients the rapid-onset types (ME/CFS appearing fast, within days of their acute viral infection), or gradual-onset types (ME/CFS appearing slowly and gradually over a period of months after their acute viral infection)?

And it would be interesting to see which particular ME/CFS symptoms they have, out of the all the possible ME/CFS symptoms. Like do they have gut symptoms/IBS, headaches, muscle and joint paint, brain fog, PEM, etc. I am just wondering whether CCI/AAI-positive patients display the usual ME/CFS symptoms, or whether they might have some symptoms which are more prominent or less prominent.

Like for example, might headaches be more prominent in those with CCI/AAI? And what about brain fog? I believe @JenB says she does not really suffer from brain fog, which unusual for ME/CFS. This sort of information might help characterize the CCI/AAI patient.



What do you think of prolotherapy as a treatment, @jeff_w?

Prolotherapy appears to be used for craniocervical instability and atlantoaxial instability — see this article and this article. Prolotherapy is simple and non-invasive: it involves injecting a sugar solution into the ligaments, which causes a local inflammatory response in those ligaments, leading to healing and strengthening of the ligaments.

Unfortunately most of my symptoms and recent issues haven’t been documented in this thread as it’s been all I could do to get thru each day.

 

[jeff_w]

Hi @Hip

Very interesting. @jeff_w do you know how many ME/CFS patients have been tested for CCI/AAI or Chiari malformation and have had a negative result?

There is at least one on Phoenix Rising that I know of who tested negative. @toyfoof

She did however have cervical stenosis, with spinal cord compression in her lower spine.

I am just wondering what percentage of the ME/CFS patients that you know were tested for CCI/AAI were positive, and what percentage negative.

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

It would be very interesting to know for example if these CCI/AAI-positive patients began their ME/CFS with the classic acute viral infection (typically a flu-like illness, gastrointestinal upset or sore throat)

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.

In other words, it may not be the viral infection itself that causes ME/CFS. Rather, what we're observing may be the person's inability to clear the viral infection, due to underlying autonomic nervous system pathology from CCI/AAI.

and whether they have high titers to the usual herpesviruses and enteroviruses associated with ME/CFS.

I had very high EBV IgM (and IgG) titers. I also had high Mycoplasma and Parvovirus IgM and IgG. All of these titers were high for the years I had ME/CFS, and they all normalized after my CCI/AAI was treated.

To my current way of thinking, I clearly had broad-based immunological impairment given these infectious results. However, I now view these chronic infections as being a symptom of underlying autonomic nervous system and immune dysregulation, rather than being the cause of my illness.

And it would be interesting to see which particular ME/CFS symptoms they have, out of the all the possible ME/CFS symptoms. Like do they have gut symptoms/IBS, headaches, muscle and joint paint, brain fog, PEM, etc.

I had all of the above.

I am just wondering whether CCI/AAI-positive patients display the usual ME/CFS symptoms, or whether they might have some symptoms which are more prominent or less prominent.

A detailed questionnaire or study would be quite useful. From everything I've seen, the symptom presentation is exactly the same.

Like for example, might headaches be more prominent in those with CCI/AAI? And what about brain fog?
I believe @JenB says she does not really suffer from brain fog, which unusual for ME/CFS.

I had severe brain fog. Brain fog is itself a symptom of CCI/AAI. Jen appears to be unusual in this way, both for a CCI patient as well as an ME patient.

This sort of information might help characterize the CCI/AAI patient.

While that would be useful information, I think the most efficient way to tease apart any potential distinctions is for people with ME/CFS to be routinely evaluated for CCI/AAI.

What do you think of prolotherapy as a treatment, @jeff_w?

In order to treat CCI/AAI, it would have to reach the alar and transverse ligaments. There is a new stem cell procedure that reaches these necessary ligaments and is showing promising, albeit very early, results with treating CCI/AAI.

 

[Wayne]

D) so what are the non surgical treatments? I am curious despite my low quality of life about exploring these before I commit to surgery.

Prolotherapy appears to be used for craniocervical instability and atlantoaxial instability — see this article and this article.

When I first started talking to my physical therapist about the possibliity of CCI/AAI, the first thing she thought of was prolotherapy. She also felt that any number of non-surgical therapies should be explored before resorting to surgery. She wasn't opposed to surgery; just felt it should be a last resort. I feel the same way. -- @Hip, thanks for posting those links.

 

[toyfoof]

While that would be useful information, I think the most efficient way to tease apart any potential distinctions is for people with ME/CFS to be routinely evaluated for CCI/AAI.

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’ll be testing this theory over the next few weeks as I go through PT and injections.

That said, I’m going to bow out of this thread so those with the actual diagnosis can continue discussing and hopefully helping others get their necks looked at. Good luck to all!