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

[humanrising]

wanted to say thank you again for all the help and info. I have been doing really bad lately and can't be on this darn thing for very long ( my neck and head feel like its a vice and someone poured gas on it and set in on fire) sure some of you know that feeling!

I didn't get it together for my GP appointment . I just really wanted a B12 and Toradol injection to allow me to be upright. I did bring it up and she said. " get all the info, do the leg work of how it should be written where you need the MRI done and I will order it. bless her. she doesn't know a darn thing about my illness but she is a saint for willing to listen and be open. so lucky. this is just a low income clinic that able to do the bare minimum. I have been desperately trying to get to see a qualified doc but days like this I count my lucky stars to have what I do.

when I can read I will go back and print all the things you told me to look at. I would guess I would then need to contact Dr B in New York to make sure I know how he would want the order to be written and go from there.

there are quite a few standing MRI places in southern California so Ashley maybe you could contact the radiology department that has one and see if they have a doctor who routinely orders standing flexion extension MRI's for possible herniation and CCI.....even if what you end up doing is the supine tesla.

A few years ago I was interested in trying nasal ketamine for pain and saw a really great pain doctor in San Diego.( my dad's cancer came back and I put any treatment on the back burner, I only met her for the first consult) her name is Nancy Sajbin, now CCi is not her thing but she is sharp and open and might be willing to write an order for it or you might be able to just email her your predicament she does answer questions on her web site which has load of great pain info and new and out of the box treatments. Maybe if she isn't interested she may know someone else that she could recommend. she is one of those doc's that you know honestly wants to help people especially those who are misunderstood. hopefully someone here can give you a better lead.

since I haven't gotten around to reading everything I should on this.....is insomnia any part of the symptoms since this is my other big issue I would love to know. kept thinking how in the heck did Jeff sleep with that hallow on!

 

[sunshine44]

I am unable to comb through all of this right now but absolutely suspect I am dealing with this and it is one of my root issues. If I were to get diagnosed, etc. surgery is not an option right now. Does anyone know of any resources in this thread or otherwise that talks of how others have healed from this from other methods beyond surgery in those of us where it is not advisable?

 

[Wayne]

Does anyone know of any resources in this thread or otherwise that talks of how others have healed from this from other methods beyond surgery in those of us where it is not advisable?

I'm hoping to start a thread on this topic very soon.

EDIT: -- Here it is...

Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

 

[sunshine44]

I'm hoping to start a thread on this topic very soon.

very good. thank-you.

 

[Rlman]

I'm hoping to start a thread on this topic very soon.

EDIT: -- Here it is...

Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

awesome idea @Wayne, thanks for starting this thread!

 

[Rlman]

https://www.regenexx.com/blog/a-case-study-of-severe-ccj-instability-and-our-picl-procedure/

 

[Daffodil]

wonder if i can ask an opinion: if you could get the opinion of only 1 doctor - henderson or bolognese - which one would you prefer?

thanks

 

[Daffodil]

what do you guys think of an Upright MRI CSF Flow study? it can show if the blood flow is impaired due to CCJ i think?

https://cds.ismrm.org/protected/09MProceedings/files/00940.pdf

https://www.msweb.nl/forum/showthread.php?p=1025333&styleid=111

 

[Daffodil]

has anyone heard of Atlas Orthogonal. this chiropractor suggested it to me

 

[StarChild56]

wonder if i can ask an opinion: if you could get the opinion of only 1 doctor - henderson or bolognese - which one would you prefer?

thanks

Dr. Bolognese - because my specialist referred me to him (and obviously trusts him - I trust my specialist and he probably saved my life), and because of @jeff_w - his experience & research.

 

[Daffodil]

I emailed the people at Regenexx (stem cells) in Belgium. Their main office is in Colorado but I thought Europe would be cheaper. They said its 8000 - 13000 for stem cell injection. I think this is per injection. Since i have problems from C0 to T1, this would cost me just as much as surgery! That is ridiculous considering it may not even work.

I certainly dont want to do a fusion of my entire neck....so this is bad.

Anyway, there is a lot I dont know yet so I will try not to panic

 

[fredam7]

@StarChild56 @Gingergrrl a DMX is a digital motion x-ray. sort of like a short movie...so they can see the bones as you move. i believe henderson asks for this as well

i found only 1 place here that has that capability - a chiropractor's office. that means a lot more money, having to go through initial assessment and arguing as to why i dont want to follow his recommendations. it is so exhausting with someone new. even though they mean well, after this long, you just want what you want because you are just so jaded and tired.

this one chiro i contacted was very nice but mentioned AO instrument reduction(?) and said i should try stem cell (prolotherapy?) before surgery. i am sure they will also want to do manual manipulation which i would never do.

anyway, i am a little calmer now, having digested the news, and have ordered a good cervical collar. so we will see...

i also called Dr B but will get DMX first before i think about making an appt...

thanks for reading!
oxo

ps can you imagine ?? C0-T1 fusion?? thats my whole neck! and i was worried they would find nothing hah. be careful what you wish for, as the say

Have you considered getting an opinion from an orthopedic spine surgeon and neurosurgeon , that are not part of the great CCI experiment ? A 10 level fusion is something you may want to investigate very, very thoroughly . You have no pain , no neuropathy , nothing. If the surgery was free, would you fuse 10 levels just to see if the CFS improved ?
They told you it should be fine and only turning while driving would need caution ? That's certainly interesting . And they also said just fuse it all to prevent surgery down the line ? I don't know how to phrase this without getting deleted .

I think it might be a good idea to weigh the fact the radiologist saw nothing but a few bulging discs , which many people have . Maybe reflect on that.

I'm also wondering why this CCI as cause of CFS and surgery to cure for CFS, is being allowed to be pushed as real
and accurate and anything contrary is seen as a crime against the board? There are a lot of vulnerable people here and I fear many are going to get very hurt.

CCI is extremely rare . You have no symptoms . I know this comment will not be well received by the board and CCI advocates, but the more I read your posts , the more I felt it was my minimum duty to say something. This is not medical advice , I just can't believe what's going on here and would like to say a lot more to spare people . Interesting how it's the same dr funneling CFS patients to these "CCI literate"
neurosurgeons . Strange how that dr's patients are directing the herd .

I have severe head and neck pain , arm and hand weakness , hands go completely dead, neuropathy , when I turn
my head I get more confused , constant tinnitus, vertigo, severe headaches , breathing issues etc etc but I also have eds, I also have been very inactive , I also might have issues with the carotid arteries . The neck symptoms are real but CCI is extremely rare and even then , the surgical outcomes might be something to reflect on. I personally wouldn't send my images and symptoms to one of these "CCI literate" neurosurgeons because fusions don't have a good track record . I'm curious if those who had the surgeries , had bone or bmp used in their fusions . I'm also curious why they all have the same dr who told them they have MCAS and pots, and what tests were used to conclude they had these disorders .

Frankly , I'm glad people are telling you to not look for savings on a surgery but I was hoping to see some people suggesting you get additional
opinions outside the 4 who enjoy performing this experiment or someone discussing your willingness to fuse your entire neck or even 1 level.

 

[Daffodil]

@fredam7 thanks for your thoughtful post. i know you are right and it is unlikely i will go ahead with fusing my entire neck (its actually 7 levels i think). there is no point in showing my MRI's to non CCI literate surgeons because they will of course think i am crazy. it also takes 1 - 2 yrs to even see one here! i dont even have much dizziness and no vertigo. no headaches really either.

i do have a feeling of heaviness in my head/neck and the fog does worsen a lot if i lay for prolonged periods of time with a pillow scrunched under my neck. there is also the matter of the extreme neck stiffness and cramping that occurred on and off after the EBV infection but then stopped. why would it stop?

but my fog also isnt intolerable like it used to be years ago...i used to be suicidal from the pressure in my head. i understand that if it was CCI, it would worsen over time.. but years of antibiotics helped it.

i guess it is possible brain stem compression is causing the digestive issues and downstream leaky gut which is causing the fog, but you would think that i would have headaches at the very least.

there is also the fact that my sinuses are always inflammed. an old MRI showed sinusitis. a manhattan ENT said he thinks its coming from trigger points in my neck (he did some swab/culture and massage)

the CCI-literate doctor said it is unusual that a patient like me isnt more disabled. my neck must have looked horrible to him.

i'll go ahead and pay for the DMX and try the cervical collar.

have you had surgery? it sounds like you are suffering a lot with this

are you a member of the BTM group? i have been trying to get in for a month. :-/

thanks

 

[gm286]

@fredam7 hey!

I get the essence of your post, glad you shared your thoughts. CCI is rare because it is hard to diagnose, because EDS is not frequent, and because CFS is still considered a mystery illness by so many doctors.

Can’t discredit anything about Jeff’s story or the surgery. What is unfortunate is that this appear a to be the only solution to the problem. It’s a solution I won’t choose. Unless I drastically deteriorate and hopefully that won’t be before decades if ever.

Problem with CFS is its a whole bag of impasses and dead ends. I just had my doctor tell me she won’t follow through on any autoimmune/antibody testing or any tests for reactivated infections. She said I can’t do this alone, what will I do about interpreting the results, i.e needs a whole team people behind the patient the way they do at Stanford for instance.

I could look for something like this in europe except CFS literally has no backing in France. It’s really a mess of the highest order. Which is why people put hope wherever they can find it even if in a neurosurgeon. We definitely need to be strong and not bite the bait if we can handle it.

You asked about the technique. Gilete does it with bone from the rib cage I’m fairly certain.

 

[Daffodil]

@fredam7 i am not sure neck stuffness/cramping is a symptom of mono....and i think mine came on a while after the acute infection resolved. i always assumed it was from the lymph nodes being swollen but now i have no idea.

yes if you wear the cervical collar for prolonged periods of time, the neck muscles can weaken but i was just going to use it for a few hours to see if i feel better on it - thereby indicating that cervical instability might be an issue.

i read that brain stem compression can cause digestive issues, breathing issues and maybe immune issues as downstream effects....maybe there is a connection between CCI and MCAS?

geneticists say that EDS can cause mitochondrial dysfunction....I read that somewhere

what is interesting is, Jeff had all the hallmarks of CFS including elevated EBV antibodies and low NK cell function. After his cervical surgery, his EBV titres were normal for the first time in a long time. I dont think he tested his NK cell function but I hope he does because that would be very significant indeed! @jeff_w

xox

 

[Daffodil]

maybe i could get disc replacements at 6 levels and fuse the top level? not that i can afford it, just speculating. that would probably be more expensive than fusing it all

 

[gm286]

@fredam7

The whole thing is abysmally complicated. If CCI surgery is the only solution then it is the only cause of CFS: this makes a lot of sense at first glance. Except CFS might be a multi-faceted issue. If it were then there would be multiple causes and triggers for the illness.

Among EDS patients, I saw a statistic on a pain/EDS website that 1 in 15 people with EDS would develop CCI. A word about Dr Gilete and the CCI diagnostics process because it keeps being brought up. I had imagine done in London and a *VERY* credible person had diagnosed my AAI before Gilete went on to diagnose CCI.

There is, and was, nothing 'insincere', 'deceitful', 'ill-intentioned' about my time with Dr Gilete. He did *not* try to sell me on the surgery. There *is* a sort of ingenuous, aloof pragmatism about what they do -- they are NOT concerned with etiology and the why of the situation. They merely address the problem with surgery. There is a lot wrong with this and a lot 'not-wrong' to not say right.

I've read here and there (on PE) that the surgery can backfire, go wrong and then other surgeries are needed or other instabilities get triggered because of the first. There was no 'funneling' at Dr Gilete. The Upright MRI was done, something very clear was seen in my case, and Dr Gilete confirmed a couple other things.

Dr Gilete asked for a full MRI of my back when I was there, which showed mild scoliosis. I have had neck issues for practically my entire life. I elected for a lower back MRI several times over the years which showed some early minor degeneration in a disc of my lower back. I have had occasional shooting pain in my hips when walking for as long as I can remember (happens when tired).

It goes on and on, there is nothing inauthentic about any of this. I am personally relieved I was diagnosed, if only that. Dr Gilete explained that my ligaments were completely incorrectly positioned, *on a dynamic imaging file* of my ligaments in motion. The position was entirely wrong where instead of being parallel the ligaments were in a stacked 'X' position (don't ask my exactly what this means, all I know is it might be called subluxation, and it basically means the ligaments open up when rotating my head in an 'abnormal' way).

I went to a see a physician in a clinic for a POTS test (as close to a tilt table as I could get). I did a serum tryptase test for MCAS (this was what my doctor prescribed). Nothing came back unusual.

I would simply not fuse my head and neck and would probably avoid the surgery unless I were maybe on my deathbed. But SO much junk has happened to me over time that I am just plain confused.

There are viruses I should be tested for which I can't check for right now. My doctor will not do this for me because she has outright told me I need experts to follow through on my results, and she's probably right about that. It just slows down the whole process.

I should be looking at mold illness (I'm a bit skeptical this is a mold issue) -- weird viral triggers manifested before and after I got extremely sick (bout of pneumonia first week of college). I got back from a trip abroad the last year of high school with what I assume is Hand Foot and Mouth Disease (small red spots on the arches of my feet that either grow with plasma or fade and dry up and get discoloured). This is apparently associated with gut virus. I have gotten ill with gastro issues several *very harsh* times after that.

And then there's the other stuff. Seborrheic dermatitis, alopecia, fatigue, hypersensitivity type II, easy to get cold in extremities (hands, feet), hay fever, frequent nose bleeds when young. What is all this? I want to lean toward purely auto-immune but it could fall along the mechanical CCI stuff: one thing triggers another to the point that you have problematic blood flow throughout the body and to the brain, classic immune dysfunction, and your body can't achieve homeostasis.

 

[StarChild56]

There are established guidelines for diagnosing MCAS and POTS - blood tests and BP/HR respectively. My diagnosis of both are based on meeting criteria and my symptoms match. As do my responses to the meds.

 

[frozenborderline]

Have you considered getting an opinion from an orthopedic spine surgeon and neurosurgeon , that are not part of the great CCI experiment ? A 10 level fusion is something you may want to investigate very, very thoroughly . You have no pain , no neuropathy , nothing. If the surgery was free, would you fuse 10 levels just to see if the CFS improved ?
They told you it should be fine and only turning while driving would need caution ? That's certainly interesting . And they also said just fuse it all to prevent surgery down the line ? I don't know how to phrase this without getting deleted .

I think it might be a good idea to weigh the fact the radiologist saw nothing but a few bulging discs , which many people have . Maybe reflect on that.

I'm also wondering why this CCI as cause of CFS and surgery to cure for CFS, is being allowed to be pushed as real
and accurate and anything contrary is seen as a crime against the board? There are a lot of vulnerable people here and I fear many are going to get very hurt.

CCI is extremely rare . You have no symptoms . I know this comment will not be well received by the board and CCI advocates, but the more I read your posts , the more I felt it was my minimum duty to say something. This is not medical advice , I just can't believe what's going on here and would like to say a lot more to spare people . Interesting how it's the same dr funneling CFS patients to these "CCI literate"
neurosurgeons . Strange how that dr's patients are directing the herd .

I have severe head and neck pain , arm and hand weakness , hands go completely dead, neuropathy , when I turn
my head I get more confused , constant tinnitus, vertigo, severe headaches , breathing issues etc etc but I also have eds, I also have been very inactive , I also might have issues with the carotid arteries . The neck symptoms are real but CCI is extremely rare and even then , the surgical outcomes might be something to reflect on. I personally wouldn't send my images and symptoms to one of these "CCI literate" neurosurgeons because fusions don't have a good track record . I'm curious if those who had the surgeries , had bone or bmp used in their fusions . I'm also curious why they all have the same dr who told them they have MCAS and pots, and what tests were used to conclude they had these disorders .

Frankly , I'm glad people are telling you to not look for savings on a surgery but I was hoping to see some people suggesting you get additional
opinions outside the 4 who enjoy performing this experiment or someone discussing your willingness to fuse your entire neck or even 1 level.

what do you mean “being allowed to be pushed? There’s been plenty of pushback on this theory, which is still only a theory, but a lot of it is somewhat incoherent criticism. Skepticism is good, but I think that some of what you said is problematic and unfounded. The very problem here is that we don’t know how rare CCI actually is. Not screening for something thoroughly and then saying it’s actually rare , is tautological. There are well described crossovers between both the symptoms and objective pathology findingns in ME and things that could be caused of CCI.
I would say that to date, nobody has constructed a theory with more explanatory power for ME/CFS than this mechanical paradigm that manages to be consistent w/both infections and trauma onset and also encompass possible genetic predisposition , and explains the autonomic, immunological, and metabolic components of this illness.
Now, a theory having a lot of explanatory power doesn’t mean it is correct. This is an area that more light needs to be shed on, not less.

There are some publications so far about relates areas. The peter Rowe case studies and that earlier fibromyalgia study Jen brea posted that was very impressive. The problem is that what he have now is just anecdotes, but we have a large volume of anecdotes and speculative theory that is very promising.

The fusion surgery might be a lesser of two evils. I’m aware the spine is a holistic unit and that surgeries will be needed down the line. In my case I would love to not get the surgery. But experimental options for tegrowth of ligements, like stem cell injections, are not covered by insurance like the surgery is.

I appreciate skepticism toward a small amount of doctors producing these diagnoses, but I really think you should apply some critical thinking if you think that these guys could get away with being a canal that misdiagnoses and provide unnecessary surgery, all supporting this false paradigm, for these many years, as such high profile, respected neurosurgeons. Out of the four listed the only one who has any controversy is bolognese, which may be because he uses more experimental techniques. I haven’t heard anythinng bad about Henderson, sandhu, or gilete. And they have been practicing in a very delicate and risky field on high volume of patients for years. There are also objective measurements for cci diagnosis, so one can learn to read these mris and check. These guys also publish stuff on the use of these measures -clivo axial angle, etc , to check this stuff. If they really wanted to hide that they were making fake diagnoses, I don’t think they would publish all of this information on diagnosis, and non-surgical treatments, along with fairly modest stuff on patient outcomes after surgery —Henderson has done this and it supports that surgery isn’t a cure all.

I appreciate skepticism toward rushing into dangerous surgeries. If we apply too much knee jerk skepticism toward promising theories backed up by mountains of anecdotal evidence, before they even get tested , we are just hampering the process of possibly giving people safer, non-surgical solutions to ME/CFS.

 

[frozenborderline]

It should be noted that radiologists miss an astounding amount of stuff, and many neurologists rely mostly on the radiology report. There’s a huge problem in medicine of it becoming fast, overly “efficient” , etc , at the cost of patient care. It’s no longer artisanal, your physician on average is just running your lab work through a program that tells him if something is out of the normal range, not poring over your tests like a detective trying to figure out a puzzle. When people actually do the latter, they are often accused of seeing stuff that isn’t there.