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

roller

wiggle jiggle
Messages
539
Likes
303
Here's Jen talking about the effect of CCI surgery on her.


It seems to have cured her breathing problems. She's not yet willing to say it had any effect on her ME/CFS. Time will tell.

As Jen points out - the surgery remains experimental.

she had 3 spine surgeries since november 2018 and can now breath better ?
but complains about brain fog, when i read that right ?

would be interesting to know how much the treatment was so far (split in surgery/doctors fee and clinic stay) and what meds she has been taking ever since. to me.
 
Last edited:

leokitten

Senior Member
Messages
723
Likes
2,182
Location
Maryland
Here's Jen talking about the effect of CCI surgery on her.


It seems to have cured her breathing problems. She's not yet willing to say it had any effect on her ME/CFS. Time will tell.

As Jen points out - the surgery remains experimental.

@Murph none of the tweet links work for me (incl in your other posts here)
 
Messages
1,185
Likes
5,600
@Murph none of the tweet links work for me (incl in your other posts here)
Got those links in a different format and edited . thanks. hopefully they come through.

Here's Jen's one again for anyone who doesn't want to go back up the thread.

 

Rlman

Senior Member
Messages
341
Likes
292
Location
Toronto, Canada
@Daffodil on the BTM group lots of people have a reversed curve of the neck. would be good to share your mri images and on BTM. I think you should ask BTM if your mri images are decent before relying on the chiro's opinion of them.

in reply to another earlier post of another poster: Bologenese wants a 3T mti with flexion and extension views, which is not usually part of a 3T cervical mri, but would look at upright mri images probably as well if including flexion extension
 

Daffodil

Senior Member
Messages
5,313
Likes
5,306
she had 3 spine surgeries since november 2018 and can now breath better ?
but complains about brain fog, when i read that right ?

would be interesting to know how much the treatment was so far (split in surgery/doctors fee and clinic stay) and what meds she has been taking ever since. to me.
hi roller. where does it say she still has brain fog? i read she had improvement in her neuro symptoms...but she may have meant headaches etc

i guess it is really too soon for her to say anything about the CFS in general because she is somewhat influential and these surgeries are not minor...they are life altering.

also, if someone has been sick so long, i imagine it would take a long time to start feeling much better even if the surgery is the solution. there are so many downstream illnesses...leaky gut, reactivated infections, autoimmune processes etc etc
 
Last edited:

Daffodil

Senior Member
Messages
5,313
Likes
5,306
@Daffodil on the BTM group lots of people have a reversed curve of the neck. would be good to share your mri images and on BTM. I think you should ask BTM if your mri images are decent before relying on the chiro's opinion of them.

in reply to another earlier post of another poster: Bologenese wants a 3T mti with flexion and extension views, which is not usually part of a 3T cervical mri, but would look at upright mri images probably as well if including flexion extension
thanks a lot for letting me know this. i am seeing my local doc this week so will ask for those tests. my upright MRI was apparently garbage.

i had no idea so many people had the reversed curve! i guess its unlikely that the neck is the problem then...i dont know anymore.

I would love to show my MRI's to the BTM group but i have been trying for months to get in...they wont let me in the group.

xo
 

debored13

Senior Member
Messages
1,682
Likes
1,716
Location
Vermont, school in Western MA
Thread on twitter in which Jennifer Brea and Porochista Khakpour discuss CCI, fusion, and allegations of "predatory" surgeons. (If you double click the picture below it should open the whole "thread" in a new tab.)


EDIT: the forum software recently changed and is displaying tweets now about 5% of the time. Sorry. Clicking the link shown should still work.
Hi if this thread was members only I would have something extra specific to say about the things alleged and more, and am willing to discuss certain things by dm, if anyone is interested. Unfortunately some people that are skeptical of cci , like the twitter account “truthseeker” , have been putting comments from this thread onto twitter and making allegations that are pretty unfounded and inflammatory—- that particular account accused not just Jeff, but also David Kaufman!!!?? of being in on some kind of scam with Bolognese. As far as I can tell, Kaufman is one of the most respected doctors in this field and he is also porochistas doctor, so whatever she thinks about bolognese in particular, I believe she probably does not support these wild allegations that this anonymous account is tweeting.

I certainly have some concerns myself about bolognese but although I am extremely tired and brainfogged id like to try and restate my earlier points in this thread : 1. I believe the possible link between mechanical deformation and me/cfs symptoms is strong—supported by some studies and lots of anecdote, and needs to be investigated further. The mechanical paradigm has more explanatory power that ties together multiple different findings than any other I’ve seen. It explains why correcting metabolic or viral or autonomic issues in this illness often yields temporary results but the body very quickly goes back to former dysfunctional homeostasis.
2. I don’t want anyone to have surgery but I have concerns that expressing too much unfounded skepticism toward even the diagnostic process itself—not just the surgery (which people should consider a terrible last resort possible lesser-of-two evils thing), without actually looking critically at the reasons why this may be overlooked, will slow the enthusiasm of researchers to delve into one of the most promising areas and thus we won’t get non -surgical options soon enough.
3. Truthseeker not only attacked Kaufman, Jeff, Jen and bolognese, he also, with another twitter account, seems to have a quixotic campaign against doctors using not just antiretrovirals but literally any antivirals in me/cfs. He has been wrongly interpreting the evidence and concluding that since Davis didn’t find pcr evidence for any viruses that any doctor using these is a quack and being irresponsible and dangerous. I don’t have the energy to dig up examples of this but you can search his handle as well as his friends (it’s furtiv_incogn?? Or something) for these examples.

4. I am not saying that there are not well-founded concerns about some of the neurosurgeons involved. You will note that one of the people who said the star neurosurgeon pushed surgery for cci too much , was still diagnosed with cci by the more “responsible” neurosurgeon that said she didn’t need surgery. So I don’t know whether we need to assume that even if there’s a concern about neurosurgeons pushing surgery it follows that their diagnoses are wrong.

Also, as far as I can tell, there’s a very salacious tone to some of this that obscures the issue to an extent. It seems like everyone is already aware of the lawsuits against bolognese, but when I did some digging I couldn’t find much or anything on Sandhu, Gilete, or Henderson, and they all had excellent reviews. It seems that neurosurgeons get sued higher than any other profession and you would expect some dirt on these guys. The worst reviews I could find on Henderson were something accusing him of being in cia mind control program , possibly from some mentally ill chap, and a review saying surgery was fine but his aftercare wasn’t great and neither was his bedside manner. i Also finally got into beyond the measurement and I don’t think that what is alleged re: no discussion of this being allowed and some kind of coverup for bolognese is true at all! There is lots of critical discussion of bolognese but also lots of people who love him. It’s just not allowed to discuss the details of the current lawsuits because that could devolve into attacking the claimants. I think that is fairly reasonable.

I actually share a lot of concern about large aspects of this process but I don’t think this whole diagnosis is in the least a manufactured issue and like I said I am happy to further explain certain things by dm but I would love to know if anyoje knows on the IT end what measures can be taken to make some of this whole thing more private ... did we ever identify who “truth seeker” is and if that person was a poster here? I do have more to say about some of the acxounts involved. I don’t feel totally safe with a lot of this. We have to factor that in as part of the discussion, I think that the open discussion of some of this actually skews toward shutting down positive discussion about cci because some of the skeptics are doing things like trawling through members only forums to post comments on twitter and whatnot. So we can’t have a truly open discussion about this but I can point to more literature on this in a second.

Oh and as an aside—besides PEM? I think all of the symptoms of ME/CFS have been known to be accounted for by CCI but just weren’t included as that diagnosis for a while—especially the connection between cci and orthostatic intolerance/autonomic issues.
 

debored13

Senior Member
Messages
1,682
Likes
1,716
Location
Vermont, school in Western MA
Here's Jen talking about the effect of CCI surgery on her.


It seems to have cured her breathing problems. She's not yet willing to say it had any effect on her ME/CFS. Time will tell.

As Jen points out - the surgery remains experimental.

Yes I think the connection between this and me/cfs remains experimental. I wish we could get more researchers interested in it frankly but it comes down to scarcity and everyone staying in their own bubbles of interest , when there’s not enough funding to go around and justify redundancy and following many leads.

I will be asking a friend to ask Ron about the genetic /molecular aspect of this structural theory soon—wonder if they can do some intracellular metabolomics on small needle biopsies from brainstem?? Or is that too dangerous/crazy? Regardless with their access to data they should be looking at mutations involved in collagen and possible metabolites or stuff involved in neural injury and inflammation.

I also feel sorta icky about everyone hungrily following Jen post-surgery to see what her results are. I do it and I understand why everyone wants to know but ultimately we have to make our own decisions and basically understand that we would be guinea pigs or pioneers for this experimental treatment (not experimental as a cci treatments but experimental as something connected to cci). We need to let Jen heal. Even though she’s been public about aspects of her health journey I still feel like it’s a nice idea to let it be private to an extent even if she seems to be inviting some discussion of it.
I am genuinely so sick that I would not care if I died during the surgery, I would probably do a surgery that had a 50% chance of death —but my concern is more that the surgery could put me in an even worse state than I already am. As many of us with severe ME have learned, there are many things worse than death, and it is those outcomes I am most concerned about. So despite this abhorrent quality of life I will not rush into surgery
 

debored13

Senior Member
Messages
1,682
Likes
1,716
Location
Vermont, school in Western MA
Here is some literature:
http://www.positionalcordcompression.com/images/J_Pain_2008_PCMS.pdf
(A large study that showed spinal cord compression in fibro patients very frequently)

https://www.ncbi.nlm.nih.gov/pubmed/29391028/

The Rowe study involving improvement of me/cfs and orthostatic intolerance in patients with surgery for cervical spinal stenosis.


As far as I know there’s no literature showing cci me/cfs link specifically. But no study has been undertaken on this possible comorbidity. So if we are being properly empirical and not just using skepticism as an affect or reflex, i think we ought to consider the possibility that this is drastically under researched ! The neurosurgeons involved do do research on cci symptoms and diagnosis and the rate of improvement after surgery but as far as I can tell none of them are researching the connection as a possible comorbidity or cause of me/cfs. And none of them are touting it as a possible me/cfs cure, which in my mind makes some of the accusations of a “mania” more ridiculous.

Bottom line, it is INSANE that the possibly genetic clusters of comorbidities of POTS/CFS/EDS/MCAS are not being researched for overlap more, as there’s probably fire (evidence) where there’s smoke (huge volume of anecdote). But what can we do? It just comes down to such a drastic lack of funding that a possibly incredibly fruitful and even interesting research subject is so totally ignored that researchers are basically fighting for crumbs and each pursuing their own theory to an extent with very little ability to find a unifying theory with good explanatory power. Thus patients are left in the dark and when we try experimental treatments we are open to a great deal of risk. But the risk of not experimenting , in my case, is so huge that I cannot refer to it without eliciting concern and getting close to a violation of forum rules.

Now, I haven’t even delved into the full text of the suits against bolognese but I’d be curious to as I’d love to be very informed about every aspect of this. Just a couple thoughts as skepticism of the skepticism though— these are lawsuits, not case studies. And most of them seem to be on chiari patients with tethered cord, not cci. It seems that chiari decompression has a higher rate of failure than simple cervical spinal fusion. It also is diagnosed differently and as far as I know, there’s really no across-the-board agreement on how asymptomatic tethered cord is. It’s one of those things, like “benign” spinal cysts Or benign brain tumors , that might be considered to be asymptomatic but cause symptoms in many.

I’d be curious to read the suits and see if people that solely had a fusion for cci were in any of them, and if they were considered misdiagnosed and if so, what did the other physician use as evidence that they were misdiagnosed. Was the other physician referring to an objective measurement like clivo-axial angle, when pointing out the misdiagnosis, Or were they simply stating clinical opinion /saying that the symptoms weren’t caused by the structural abnormality? A lot seems to hinge on these distinctions.

My concern is also as Jen points out, that the worst point to ration care from a patient perspective is diagnosis. Statistical ideas about how prevalent or likely explanatory a given diagnosis is are invalid without an idea of how many have had access to really thorough diagnostic procedures for tbis. In our case it seems rare. I may sound like a broken record but it bears repeating
 
Last edited:

Daffodil

Senior Member
Messages
5,313
Likes
5,306
@debored13 i also feel the same way...wouldnt mind too much if i died during surgery lol but problem is you could end up paralyzed or something and not dead!

do you really feel that CCI is the most likely candidate as cause of this illness? It would explain why some people get it after an accident but not everyone does.....and how could it explain why so many people get it after EBV? there really is not enough evidence to suggest EBV itself damages the cervical spine.

i know that it is possible that EBV is a reactivation in an already weakened immune system, which some specialists believe, but i dont really believe that. there are elite athletes who have developed CFS after an infection.

i used to think retrovirus fit perfectly but no one found anything.

that paper out of Cincinnati Children's Hospital said that EBV NA2 binds to locations in the genome that are associated with several autoimmune diseases....this is the most intriguing to me so far.

there are also plenty of people (i am told) who have had CCI surgery and are still sick.

xo
 

debored13

Senior Member
Messages
1,682
Likes
1,716
Location
Vermont, school in Western MA
Yes, well this truth is a double-edged sword (sorry for the cliche everyone). It means both that there’s a rational reason for risk-taking (“desperation” implies a state in which risks are not weighed properly but I think it can be argued that there’s a state of rational risk-taking calculated relative to quality of life, that shouldn’t be considered irrational desperation); but it also implies that the risks shouldn’t just be considered in terms of death, but should be considered how much worse than death the worst outcome from a risky procedure is.
 

debored13

Senior Member
Messages
1,682
Likes
1,716
Location
Vermont, school in Western MA
@debored13 i also feel the same way...wouldnt mind too much if i died during surgery lol but problem is you could end up paralyzed or something and not dead!

do you really feel that CCI is the most likely candidate as cause of this illness? It would explain why some people get it after an accident but not everyone does.....and how could it explain why so many people get it after EBV? there really is not enough evidence to suggest EBV itself damages the cervical spine.

i know that it is possible that EBV is a reactivation in an already weakened immune system, which some specialists believe, but i dont really believe that. there are elite athletes who have developed CFS after an infection.

i used to think retrovirus fit perfectly but no one found anything.

that paper out of Cincinnati Children's Hospital said that EBV NA2 binds to locations in the genome that are associated with several autoimmune diseases....this is the most intriguing to me so far.

there are also plenty of people (i am told) who have had CCI surgery and are still sick.

xo
I think cci is one of the best explanations for this illness so far and also with regard to explanatory power for all current findings, yes. This in fact doesn’t mean it’s the right theory though. It might be tip of the iceberg and it could be that a genetic component common to mast cell and eds issues causes the cci and that fixing that may yield short term benefit but not fix the underlying strange inflammatory disease process.

But I have yet to see a satisfying explanation that bridges the multiple findings in metabolism , autonomic issues, immune system, and virus, along with the comorbidities involved here. While I respect robert phair, his idea of a metabolic trap seems intuitively wrong to me because I can’t imagine nature built a system with so little redundancy that you get into such a state just via a virus. A structural problem like cci explains the state of severe ME sufferers better and explains why correcting possibly downstream issue yields only short term relief and something “resets”.

I still feel that surgery is a kind of crude instrument and that if we had proper studies on the genetic and molecular basis of the EDS/CFS/POtS cluster etc we’d be able to focus on fixing collagen with a non surgical therapy. But since we don’t we have this traumatic and crude procedure that nevertheless is often better than nothing.

The one thing troubling me about this theory is why many EDS patients with CCI don’t seem to report having PEM. It seems like the one symptom where there’s not a ton of overlap. Many of them have pots, fatigue, hyperacusis, dizziness, and certainly are sometimes bedridden. But I haven’t heard people with EDS talk about exercise intolerance much. Yet I also haven’t deeply investigated this and perhaps they do (I just got into BTM and have been dealing w other stuff and not researching a ton). Perhaps they do have PEM and just don’t have a term for it, after all exercise intolerance isn’t unique to ME/CFS.

Is there much research on brainstem compression causing metabolic issues/impairment in oxidative metabolism/tissue level hypoxia ?
 

debored13

Senior Member
Messages
1,682
Likes
1,716
Location
Vermont, school in Western MA
I’m very tired and I do think it would be valuable to make a separate thread that is more focused on the relative merits or issues with the mechanical paradigm, theoretically. I have repeated myself a lot and while I think a robust debate is good, this thread is sort of long at this point and a lot gets lost , which is not good if one has limited energy. I encourage anyone new coming across this thread to use the search function if you want to see what I or any other members have said about either diagnosis or theory or treatment of this. I think we should have a separate thread for the mechanical paradigm and another thread for concerns about surgeons (that one should be in members only section) , etx
 

debored13

Senior Member
Messages
1,682
Likes
1,716
Location
Vermont, school in Western MA
While we are on the topic of concerns about cci, etc, here are many tweets “truthseeker”, who is one of the people on Twitter in Porochistas thread , has posted about this or other subjects. Oh and some that his friend has posted.

I’m not saying none of the people with criticisms are credible. But this person literally disagrees with researchers like Elzakker and also basically every ME clinician, about the use of antivirals. Okay, disagreement is good. But he bases this on basically nothing besides one statements by Davis, and also uses this to call into question the credibility of the most respected ME clinicians. Then later he alleges that a long time phoenixrising member and patient is in on some kind of conspiracy/scam with one of the most respected physicians in the community, David Kaufman. Look, the lawsuits a against bolognese are out there and we should all read them. But we should also realize there’s some not-so-credible people on the other side, that are making very serious allegations against forum members and don’t have a solid grasp on the science. These people may also be currently lurking this thread. I would like to request to the moderators (@Learner1 @IThinkImTurningJapanese @Mary @Sushi ) that we either make this thread members only or merge large section of it into a members only thread so we can feel more comfortable about discussion
 

Attachments

debored13

Senior Member
Messages
1,682
Likes
1,716
Location
Vermont, school in Western MA
Yep.



I'm the one. :cool:



LOL. Most people won't need a halo. If you address all of this before becoming bedbound, then you won't need a halo.

I only needed a halo because without one, I was 100% bedbound. I couldn't even sit up to eat, couldn't roll over, couldn't stand at all, etc.

I hope everyone on here understands this. I'm curious now if everyone else is freaking out, thinking that a halo is a normal part of this.



Los Angeles and Beverly Hills have them, but I'm not sure about San Diego. By the way, did Dr. Kaufman write the upright MRI order with flexion and extension? If not, it needs to say that. Without flexion and extension, the upright MRI will be pretty useless. He wrote my order for flexion and extension.

Good luck!
@ashleyO btw
 

Learner1

Administrator
Messages
3,487
Likes
6,034
Location
Pacific Northwest
. I would like to request to the moderators (@Learner1 @IThinkImTurningJapanese @Mary @Sushi ) that we either make this thread members only or merge large section of it into a members only thread so we can feel more comfortable about discussion
This thread has been reported and will be worked on.

Please keep all discussion relevant to the topic in the thread title.

Thank you.