20 patients now found positive for CCI / AAI, there must be many more...

[mattie]

@jeff_w (https://www.mechanicalbasis.org) mentioned yesterday there are now 20 ME-CFS patients who tested positive for craniocervical instability / atlantoaxial instability / spinal stenosis. According to Jeff the percentage of patients tested positive is currently above 90% (!)

I have started this thread: Tracking CCI / AAI MRI & Treatment outcomes
to try to keep track of those numbers but also to track treatment outcomes for these patients. At the moment of writing the poll in this thread is showing 90% positive.

These numbers are getting more and more significant especially if you consider the low number of patients tested. In my humble opinion more ME-CFS patients should get tested for this.

I meet all the criteria for severe ME-CFS and POTS and that diagnosis has been confirmed by 3 different specialists. I have no obvious signs of EDS and still tested positive for CCI / AAI.

The Stanford Genome Technology Center is currently researching the possible genetic link between ME and EDS. @Janet Dafoe (Rose49) I am sure the above numbers are interesting for Dr. Davis & OMF / Stanford ?

I know this thread will overlap with https://forums.phoenixrising.me/ind...instability-cci-as-a-cause-of-your-cfs.56908/
But that thread is over 32 pages long now and only in the last pages (> page 31) it becomes clear how many patients are testing positive. Just wanted to bump up the issue with this post.

If moderators feel this should be merged with the existing thread, please do so.

 

[percyval577]

Interesting.

Before my EBV infection I was 2cm taller than my father.
Some years thereafter I reqognized that I was 2cm smaller.

When I started my low manganese diet I was for three month basically completly fine (at least I thought so),
but only sometimes my back suddenly became really upright (probably not making 4cm anymmore).
It never lasted for more than a few hours though.

I have no signs of EDS at all.
When I started my low manganese diet I thought it to be against borrelia (they contain huge amounts of this metal),
and went [being cautious] to an orthopaedist because borrelia can go into joints.
But I learned only what I already knew: "People tend to shrink when they get older."
[I didn´t believe myself in a borrelia infection in the spinal chord, but at least it´s strange ... ]

Thank you for the hint!

 

[JES]

I would be interested in how many of those 90% diagnosed that opted for surgery have improved post-surgery. I have read about clear cases like Jeff's story where the recovery is significant, but I have also seen numbers posted from a conference where a significant part of the patients did not improve post-surgery. It raises the question if these CCI findings are similar as EDS, i.e. they are more likely present in a person with ME/CFS, but are not necessarily causative factors in the disease.

 

[wonderoushope]

I was actually just reading my MRI results from Start of 2017.

I don't really quite understand it, but I have mild disc protrusion, which results in mild central canal stenosis, but no foraminal stenosis. The comments were:

small disc protrusion/extrusion in the cervical and thoracic spine.

I don't even know if this is at all relevant to the posting?

My GP explained what I have is just disc wearing and it happens as we age. Is that correct? Do I need to investigate my results further?

 

[geraldt52]

... It raises the question if these CCI findings are similar as EDS, i.e. they are more likely present in a person with ME/CFS, but are not necessarily causative factors in the disease.

I find myself ever more the skeptic after 35 years of this now, but this is beginning to feel like TMJ in the late 80s/early 90s. It seemed like everyone who couldn't be diagnosed with anything else was diagnosed with a TMJ problem back then...including me. The doctor who diagnosed me was "very confident" based on all the xrays that TMJ was my problem, and extensive orthodontics was the solution. I declined "treatment" because my nonsense alarm kept going off, and I'm glad I did. A lot of people found out the hard way that orthodontics can cause some serious problems.

I've also lost confidence that without a biomarker, patient reports of improvement are unreliable. Case in point being the Rituxan trial, where when double blinding was applied as many people "improved" from nothing (placebo) as improved from Rituxan...which calls into question whether anyone improved due to Rituxan, or whether it was just the random waxing and waning characteristic of CFS that was being reported as improvement. I think the jury is still out.

I'm sure there are clear cut cases of CCI and Chiari, but I also have a sense that when someone has only a hammer everything looks like a nail.

 

[mattie]

I would be interested in how many of those 90% diagnosed that opted for surgery have improved post-surgery. I have read about clear cases like Jeff's story where the recovery is significant, but I have also seen numbers posted from a conference where a significant part of the patients did not improve post-surgery. It raises the question if these CCI findings are similar as EDS, i.e. they are more likely present in a person with ME/CFS, but are not necessarily causative factors in the disease.

That is why I started tracking treatment outcomes in the above mentioned thread.

Here are a few more positive outcomes, not CCI but spinal stenosis:
https://www.ncbi.nlm.nih.gov/pubmed/29391028

 

[andyguitar]

It's an interesting subject @mattie and I have 1 point to make. I have met 2 sufferers who got all the usual symptoms of ME after a head/neck injury. So what might be happening to some (but not all) is that some years after an injury they develop stenosis/CCI. So it may look like that is the cause of their symptoms but what is really going on is mild brain damage from the origional injury.

 

[frozenborderline]

I find myself ever more the skeptic after 35 years of this now, but this is beginning to feel like TMJ in the late 80s/early 90s. It seemed like everyone who couldn't be diagnosed with anything else was diagnosed with a TMJ problem back then...including me. The doctor who diagnosed me was "very confident" based on all the xrays that TMJ was my problem, and extensive orthodontics was the solution. I declined "treatment" because my nonsense alarm kept going off, and I'm glad I did. A lot of people found out the hard way that orthodontics can cause some serious problems.

I've also lost confidence that without a biomarker, patient reports of improvement are unreliable. Case in point being the Rituxan trial, where when double blinding was applied as many people "improved" from nothing (placebo) as improved from Rituxan...which calls into question whether anyone improved due to Rituxan, or whether it was just the random waxing and waning characteristic of CFS that was being reported as improvement. I think the jury is still out.

I'm sure there are clear cut cases of CCI and Chiari, but I also have a sense that when someone has only a hammer everything looks like a nail.

the thing is that this isn’t a clinical diagnosis and can be made based on objective measurements like clivo axial angle and some others I forget. This can be verified by people who are not the neurosurgeons in question, if one learns to read these mris and look for these specific measurements, but most people don’t have the right mri type, and furthermore most radiologists aren’t looking for cci etc. I agree with being cautious about jumping to the idea hat surgery will cure just anyone. But on the other hand if more case studies of the prevalence of this gain traction perhaps research can be done that will find non surgical options that work to stimulate collagen regrowth. There have been some published case reports that used objective measures not subjective—the peter Rowe spinal stenosis one in particular. But nobody is really tracking these outcomes besides the neurosurgeons, who don’t have a background in me/cfs, and people on this forum. I want to avoid surgery if possible but my quality of life is next to nil, and it doesn’t seem like there’s a ton of evidence for conservative treatments helping, and the stem cell etc treatments are very expensive

 

[xrayspex]

It's an interesting subject @mattie and I have 1 point to make. I have met 2 sufferers who got all the usual symptoms of ME after a head/neck injury. So what might be happening to some (but not all) is that some years after an injury they develop stenosis/CCI. So it may look like that is the cause of their symptoms but what is really going on is mild brain damage from the origional injury.

I have both post-concussion syndrome as well as significant cervical stenosis and degeneration and suspected neck instability--I havent done the upright mri yet or DMX xray but i might---I wanted to share this video of ex football player J McMahon who alleviated some of his cognitive issues from cervical intervention--it can be hard to tease out but worth a shot dealing with neck issues if possible

 

[nryanh94]

Is their any purpose in looking into this if you don’t have the neurological symptoms (balance issues, ear ringing, etc.) or neck pain

 

[Seven7]

Hmm I might be a candidate, so it is the asumption you will not have ME anymore if you fix this? I have a lot of mental issues, neck bizare noise, titinus, Abnormal Romberg and balance, depth perception....

 

[frozenborderline]

Hmm I might be a candidate, so it is the asumption you will not have ME anymore if you fix this? I have a lot of mental issues, neck bizare noise, titinus, Abnormal Romberg and balance, depth perception....

i would say no assumptions going in. But there has been at least a few full recoveries from ME form cervical issues being fixed.

 

[xrayspex]

Is their any purpose in looking into this if you don’t have the neurological symptoms (balance issues, ear ringing, etc.) or neck pain

if you have shortness of breath that requires lying down that might be a reason (f you read Jeff's "mechanical basis of CFS" he talks about research correlating cervical issues effecting respiration) or any injuries that could have messed your neck up even years before symptoms of CFS, or possibility of EDS or some sort of hypermobility

 

[jeff_w]

Hi @JES

I have read about clear cases like Jeff's story where the recovery is significant, but I have also seen numbers posted from a conference where a significant part of the patients did not improve post-surgery.

I closely and actively follow research conferences across the world in relation to both ME/CFS and CCI. There has been only one published study on the relationship between ME/CFS and neurosurgery. The paper was a case series in which three ME/CFS patients made a full recovery after neurosurgery for cervical stenosis.

Aside from this one paper from 2018, as far as I am aware, the relationship between ME/CFS and neurosurgical issues had never been noticed or formally studied -- let alone tracked like this.

I am very interested in knowing which conference this was. Can you let us know and post a link? Thanks.

 

[mattie]

Is their any purpose in looking into this if you don’t have the neurological symptoms (balance issues, ear ringing, etc.) or neck pain

There is so much overlap between ME-CFS / POTS / Dysautonomia and CCI symptoms.
Symptoms vary a lot between patients.
List of possible CCI symptoms: https://drgilete.com/craniocervical-instability-ehler-danlos/
I certainly don't have every symptom on that list.
Only way to rule out CCI AAI is by getting the specific MRI scans and have them evaluated by a CCI AAI literate neurologist.

 

[Binkie4]

Hi @JES



As far as I am aware, the relationship between ME/CFS and neurosurgical issues had never been noticed or formally studied, let alone tracked like this. I am very interested in knowing which conference this was. Can you let me know and/or post a link? Thanks.

I would be interested to see this information too, also the details of how many people improve after surgery.

I spoke to my GP about CCI. ( Am waiting to see a geneticist re Ehlers Danlos). He said he has one or two patients with EDS and CCI issues, and knew of the need to find the right people to read images but was dismissive of my concerns about whether I needed investigating for CCI.

He also said that results of CCI surgery are poor. Are there any statistics on this?

Ed: rephrased one sentence

 

[mattie]

He also said that results of CCI surgery are poor. Are there any statistics on this?

That means your GP is wrong.

Dr. Henderson:
http://ehlers-danlos.com/2015-annual-conference-files/Henderson_0.pdf
scroll down to preliminary results. Or read the whole thing as it is very interesting,

and:
https://ehlers-danlos.com/2012-annual-conference-files/Durrani_EDS_talk_8-10-12_0.pdf
Scroll down to Outcomes.

Conclusion
 Cervical Spinal Instability is a common reason for EDS patients suffering from headaches and Cranio-Cervical pain.
 It is under- appreciated by the spine community and not very well understood.
 In many circumstances, patients complaining of such complaints go through extensive work up with no treatment offered in the end.
 Stabilization of O-C1-C2, complex resolves cranio- cervical symptoms in EDS patients.

 

[Binkie4]

@mattie
Thanks for the information. Will get reading. Do let us know how you progress. Will you be going to Spain?

 

[mattie]

@mattie
Thanks for the information. Will get reading. Do let us know how you progress. Will you be going to Spain?

Yes going to Barcelona beginning of February. For updates and treatment outcomes I have created a separate thread.
Tracking CCI / AAI MRI & Treatment outcomes

 

[jeff_w]

Hi @JES

You wrote:

I have read about clear cases like Jeff's story where the recovery is significant, but I have also seen numbers posted from a conference where a significant part of the patients did not improve post-surgery.

I closely and actively follow research conferences across the world in relation to both ME/CFS and CCI. I haven't come across any conference presentation about the surgical outcomes of patients with ME who had CCI.

At this time, to the best of my knowledge, Peter Rowe at Johns Hopkins is the lone researcher examining neurosurgical outcomes in ME/CFS as it relates to the cervical spine. Mike VanElzakker at Harvard is the only researcher examining the role of the brainstem in ME/CFS. Their pioneering research has been very promising. Their research, however, is in its early stages and not to the point where any ME/CCI surgeries have been formally documented and tracked. From everything I have seen, that final step is at least several years away.

Please share the name of this conference. If this conference actually did happen, I will happily and publicly accept that I was mistaken, and I will offer you an apology. If this conference did not happen, then you might want to reconsider your post, given that deliberate misinformation could dissuade people from making life-saving decisions.