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

lunarainbows said:
Can you point me towards the publication where all the measurements the surgeons who diagnose these conditions use (including CXA), have been shown in a blinded/non biased study to be different in CCI, compared to healthy controls. Just because something is published (eg the Bragee study which has problems with recruitment bias as well as no controls or blinding), doesn’t mean it tells us much.

Also can you point me towards the publications where there’s a dose dependent traction trial at the very least on CCI patients. So far we know traction works only because patients are saying it does & the surgeon does it. We can also say the same in many other purported treatments of ME & other conditions. The point of science is to make sure the evidence gathered is rigorous.

Without either of these, why are surgeons using both traction and these novel measurements to aid in diagnosis?

I’ve pointed out in another thread that these surgeons are not without controversy, and people have reported receiving diagnoses from them that they do not get from other surgeons, and articles of other doctors/surgeons saying these surgeons are quacks. Which makes this all the more important.
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As you well know, these publications don't exist. I do understand your concerns, and to some extent I share them, but the point I am making is that your concerns do not fall under the rubric of open science. "Open science" emphatically doesn't mean you need to share your ongoing clinical and/or research activity with everyone who wants to look at it. (If that were the case, my day job would be a lot harder than it is, for one.)

Moderator note: A conversation following this post relating to 'open science' and access to learning materials continues here: Structural spinal problems and ME - blogs and social media
 
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Dr Gilete now saying that he is a pioneer in treating ME when they fulfil criteria for CCI

https://drgilete.com/neurosurgeon-spine-surgeon/

“he has been introduced to a group of patients in Europe who suffer from what is known as connective tissue disorders, such as Ehler-Danlos Syndrome (EDS), Marfans and others. He is also pioneer in the treatment of Myalgic Encephalomyelitis (ME) on those cases who fulfill criteria for CCI and/or AAI. Our Team are Europe’s surgeons to offer lifesaving and improvement to quality of life with personal evaluation and surgical solutions to address these cases.“
 
There were so many going under CCI/AAI evals last autumn that my surgeon literally asked me if there was a billboard with his name on it. He has a special interest in EDS, is more conservative than the "popular 2" in the US which is why I chose him. We often laugh about the look on his face when I explained to him how much of an uproar there is in the ME/CFS community over CCI/AAI. He was clearly appalled and kindly responded that at least I found an answer because of it. I left that office keenly aware of how fortunate I was to have chosen him. I have since been told (by someone in the community) that my NS may have "missed" CCI/AAI (I did not experience a complete remission or miraculous healing). It was suggested that I should consider an eval from another surgeon basically because they all use different diagnostic criteria. I do not like the idea that I may have CCI at one office but not another because of their interpretation of the measurements even though the structure has not changed. I have held off on saying this because I know it will anger some, but I also fear that lack of transparency will harm others.

To be clear, I did have some neurological issues that were not cleared up after my surgery even though my NS felt that they would. It IS quite likely that I have occult tethered cord, but am not at all keen on another procedure unless it is life-saving because of the very long recovery period. I still have issues with turning my neck, nut I can hold my head up straight which I had previously not been able to accomplish for more than a few minutes at a time for several years. My experience is that repairing structural issues was not a cure or even a band-aid for my ME/CFS symptoms. If I were to make a guess as a layperson without a fancy degree from an Ivy League Uni, I would say there could be some folks whose structural issues mimicked ME/CFS and were misdiagnosed by a doc who never considered that there could be a structural issue.

I want to be very clear that I am not trying to un-diagnose or re-diagnose anybody. It just seems to me that the waters of ME/CFS are murky and adding structural issues as a cause has made them even murkier. We all have been on a long road with lots of bumps and potholes, doctors who don't know or care, and we need answers. Answers are going to come from proven research. Some of us will be desperate enough to take chances along the way in hopes of big returns for our health. I am not convinced that I would have proceeded with a fusion that included the skull level. It is a huge risk & I was very, very cautious. I almost backed out of my cervical fusion while I was on the stretcher waiting to go into the OR. I am still physically and mentally exhausted 9 months later, I still have fatiguable neuro symptoms and I still use mobility aids. I met someone with a skull to spine fusion (not ME/CFS related) & am convinced that there is not much "normal" about living after that. I will concede that it sounded like there was a degree improvement post-surgery, but not a return to full duty so to speak.
 
Thank you so much for sharing and raising awareness.

While those who haven't improved (much), relapsed or worsened all together often remain silent. It would be so helpful if they would come out and share it with the rest of the world. As you said, the lack of transparency could harm others!

Very brave! Amazing stuff!
 
rel8ted said:
There were so many going under CCI/AAI evals last autumn that my surgeon literally asked me if there was a billboard with his name on it. He has a special interest in EDS, is more conservative than the "popular 2" in the US which is why I chose him. We often laugh about the look on his face when I explained to him how much of an uproar there is in the ME/CFS community over CCI/AAI. He was clearly appalled and kindly responded that at least I found an answer because of it. I left that office keenly aware of how fortunate I was to have chosen him. I have since been told (by someone in the community) that my NS may have "missed" CCI/AAI (I did not experience a complete remission or miraculous healing). It was suggested that I should consider an eval from another surgeon basically because they all use different diagnostic criteria. I do not like the idea that I may have CCI at one office but not another because of their interpretation of the measurements even though the structure has not changed. I have held off on saying this because I know it will anger some, but I also fear that lack of transparency will harm others.

To be clear, I did have some neurological issues that were not cleared up after my surgery even though my NS felt that they would. It IS quite likely that I have occult tethered cord, but am not at all keen on another procedure unless it is life-saving because of the very long recovery period. I still have issues with turning my neck, nut I can hold my head up straight which I had previously not been able to accomplish for more than a few minutes at a time for several years. My experience is that repairing structural issues was not a cure or even a band-aid for my ME/CFS symptoms. If I were to make a guess as a layperson without a fancy degree from an Ivy League Uni, I would say there could be some folks whose structural issues mimicked ME/CFS and were misdiagnosed by a doc who never considered that there could be a structural issue.

I want to be very clear that I am not trying to un-diagnose or re-diagnose anybody. It just seems to me that the waters of ME/CFS are murky and adding structural issues as a cause has made them even murkier. We all have been on a long road with lots of bumps and potholes, doctors who don't know or care, and we need answers. Answers are going to come from proven research. Some of us will be desperate enough to take chances along the way in hopes of big returns for our health. I am not convinced that I would have proceeded with a fusion that included the skull level. It is a huge risk & I was very, very cautious. I almost backed out of my cervical fusion while I was on the stretcher waiting to go into the OR. I am still physically and mentally exhausted 9 months later, I still have fatiguable neuro symptoms and I still use mobility aids. I met someone with a skull to spine fusion (not ME/CFS related) & am convinced that there is not much "normal" about living after that. I will concede that it sounded like there was a degree improvement post-surgery, but not a return to full duty so to speak.
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Thank you for sharing, may I ask what your fusion was intended for, if not CCI?
 
Responding to @Jnoelle on another thread here as requested by mods.
*Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

Your comment "PwME have been badly served" reads as if your statement applies to all those authors. Is that your intention?

PwME have no standard of care. In all cases, it is up to the patient to decide what information is relevant in the care of one's own body and to do so critically - whether diet, medication, surgery or otherwise.

I do not know what you define as 'proper science' but as a patient, collaboration with relevant patient population is important.

Yes, my statement applies to all the authors of that document. Anyone who puts their name to that muddle is perpetuating hearsay about comorbidities. There are one or two very good ME experts in the USA but they are notably absent from that list.

There are published standards of care for ME but with two problems. One is that quack psychology/ physiotherapy treatments have got included although hopefully not for much longer. It is a pity that ME physicians did not deal with this long ago. It has taken patients and people like me brought in from other fields to fight to get things changed. PThe other is that we have no reliable information about anything being effective so it seems as if there is 'no standard of care'. I agree it is up to a patient to decide how to care for themselves and to do so critically but if we have no reliable evidence for benefit that boils down to not getting involved in anything clearly hazardous like surgery (or most medications for that matter).

Proper science is very easy to define and common sense: making decisions based on reliable evidence interpreted logically or rationally. Collaboration with other patients is a great idea but surely it should be based on reliable evidence interpreted logically. The problem with all the spine stuff is that it isn't. And that is due to medical professionals using unreliable evidence and inventing unwarranted interpretations to drum up business and misleading the patient community.

This might seem harsh but I come to ME having worked in the RA field where this of bullshit from physicians and surgeons would not be tolerated. That is what I mean by PWME getting a raw deal.
 
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dreampop said:
Thank you for sharing, may I ask what your fusion was intended for, if not CCI?
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I had instability causing cord compression in both flexion and extension. I was also unable to hold my neck in a straight upright position for more than a few minutes (we thought it was due to muscle weakness). I originally thought I may have had CCI and went for imaging & an eval. Was quite relieved it was "only" instability and degenerating disc.
 
rel8ted said:
I had instability causing cord compression in both flexion and extension. I was also unable to hold my neck in a straight upright position for more than a few minutes (we thought it was due to muscle weakness). I originally thought I may have had CCI and went for imaging & an eval. Was quite relieved it was "only" instability and degenerating disc.
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That would certainly make sense for a degenerate unstable disc with protrusion.
 
Jonathan Edwards said:
Responding to @Jnoelle on another thread here as requested by mods.
*Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

Your comment "PwME have been badly served" reads as if your statement applies to all those authors. Is that your intention?

PwME have no standard of care. In all cases, it is up to the patient to decide what information is relevant in the care of one's own body and to do so critically - whether diet, medication, surgery or otherwise.

I do not know what you define as 'proper science' but as a patient, collaboration with relevant patient population is important.

Yes, my statement applies to all the authors of that document. Anyone who puts their name to that muddle is perpetuating hearsay about comorbidities. There are one or two very good ME experts in the USA but they are notably absent from that list.

There are published standards of care for ME but with two problems. One is that quack psychology/ physiotherapy treatments have got included although hopefully not for much longer. It is a pity that ME physicians did not deal with this long ago. It has taken patients and people like me brought in from other fields to fight to get things changed. PThe other is that we have no reliable information about anything being effective so it seems as if there is 'no standard of care'. I agree it is up to a patient to decide how to care for themselves and to do so critically but if we have no reliable evidence for benefit that boils down to not getting involved in anything clearly hazardous like surgery (or most medications for that matter).

Proper science is very easy to define and common sense: making decisions based on reliable evidence interpreted logically or rationally. Collaboration with other patients is a great idea but surely it should be based on reliable evidence interpreted logically. The problem with all the spine stuff is that it isn't. And that is due to medical professionals using unreliable evidence and inventing unwarranted interpretations to drum up business and misleading the patient community.

This might seem harsh but I come to ME having worked in the RA field where this of bullshit from physicians and surgeons would not be tolerated. That is what I mean by PWME getting a raw deal.
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Can I ask who you consider to be the one or two very good ME experts in the USA, and why them?
 
rel8ted said:
I had instability causing cord compression in both flexion and extension. I was also unable to hold my neck in a straight upright position for more than a few minutes (we thought it was due to muscle weakness). I originally thought I may have had CCI and went for imaging & an eval. Was quite relieved it was "only" instability and degenerating disc.
Click to expand...

Thanks. Why do you think you have occult tethered cord? It's one of dx's we've heard about that seems less controversial, persumably because it's a less risky or serious surgery (what one dr has told me) and the end result isn't a fixation of the neck. I have only read one slide show on it - by petra klinge, pretty much the first thing that comes up on google.

One frustration seems to be MRI is normal and the criteria is a little mixed. When I read the criteria it seems massively stricter than what ppl are taking about online. E.g the difference between profound incontenance (rare) and chronic constipation (common) or having spina bifida vs having leg weakness. What do you think the strongest evidence for OCTC is? Some of the studies seem to not be super solid in the sense they have no controls/subjective outcomes and without them the improvement in objective outcome can be 50%.

Actually, I'd love to hear @Jonathan Edwards 's thoughts on occult tethered cord as well as others. Do you think this could be legit condition that is just tricky to diagnose?
 
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dreampop said:
Actually, I'd love to hear @Jonathan Edwards 's thoughts on occult tethered cord as well as others. Do you think this could be legit condition that is just tricky to diagnose?
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The problem as I see it is that there is really very little quality control in neurosurgery in general. I was offered a massive 2 hr operation to deal with my chronic lumbo-sacral radiculopathy (originally. from a disc) despite the MRI showing no root compression. When I sat down and thought about it I realised that the symptoms that bother me most had come on after my original surgery and are almost certainly due to surgical scarring rather than compression. Another operation would probably have made things worse.

Neurosurgeons are not expected to have an evidence base probably because much of the time they operate to deal with very serious problems like potential paralysis where it seems hard to do nothing. But it is time they started justifying what they do.

I do not know much about tethered cord but from what I have seen it has no relevance to ME in adults. My understanding is that it may be part of spina bifida and related developmental issues that need surgery in infants. If there are no clear diagnostic criteria and endpoints are subjective then I would forget it. I find it very hard to believe that it would present in adulthood and require surgery. Symptoms like constipation are far too vague to even begin considering obscure neurological causes unless there are some associated objective physical signs.

From what I have seen of all the other stuff I would be extremely sceptical unless someone provided some hard evidence.
 
mari sterling said:
There’s actually a large literature on adult tethered cord syndrome, if you search PubMed or Google Scholar. If anyone needs help finding studies, let me know.
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I have looked at the literature. The problem here is whether any of it is based on reliable evidence.
Are there any properly controlled trials for instance?

I am glad that you are continuing to engage @mari sterling but could you help me with my specific queries about why traction or surgery should produce any more benefit than a firm collar? And whether CCI other than AAI and trauma really exists as a clinical problem?

I am very happy to believe that I have missed some reliable data but I am not motivated to trawl through speculation and uncontrolled observations by neurosurgeons having found precious little reliable information so far.

The key questions are simple though. Why does traction do anything special? Why do you need an operation? How come so many people needing neck surgery then turn out to have the rare condition of 'tethered cord'?
 
dreampop said:
Thanks. Why do you think you have occult tethered cord? It's one of dx's we've heard about that seems less controversial, persumably because it's a less risky or serious surgery (what one dr has told me) and the end result isn't a fixation of the neck. I have only read one slide show on it - by petra klinge, pretty much the first thing that comes up on google.
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She is considered a US expert on tethered cord. I have several symptoms of OTC, and I suspected that was an issue before my cervical fusion. I also have EDS which can come with additional (but mot common) complications, so I am not considering surgery. I really do not want to get into too much detail and a lot of personal stuff. I check off most of the boxes though.
 
mari sterling said:
There’s actually a large literature on adult tethered cord syndrome, if you search PubMed or Google Scholar. If anyone needs help finding studies, let me know.
Click to expand...

I have read a few studies now on adult tethered cord (although none on adult occult tethered cord, if you wan to link some I will gladly read them). I don't claim to be an expert on any of this, just giving it my best shot.

The main symptoms seem to be leg/back pain and urinary urgency and sometimes incontenance with lower body neurologic weakness in the legs, more rarely fecal incontenance and a history of trauma (apparently including surgery. I think it's important to know what % of non- bifida adult tethered cord comes as a result of surgery). Most, even as adults, seem to have a history of spina bifida.The pain and weakness are often progressive.

The clinical pictures seems highly dissimilar to me/cfs. There seems no over-lap.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2565560/

https://thejns.org/focus/view/journals/neurosurg-focus/29/1/2010.3.focus1073.xml

https://ejns.springeropen.com/articles/10.1186/s41984-019-0029-8/tables/8

https://pubmed.ncbi.nlm.nih.gov/16506479/
 
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Moved post
I’m hesitant to ask this question it seems so basic. What if any changes in relevant connective tissues have been directly and objectively observed eg using biopsy, and documented in people with an hEDS or MCAS diagnosis?
 
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