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

[Daffodil]

wondering, why a reduced curve would cause such bad problems ?
what exactly is the harm done by a reduced curve ?

@Daffodil
what is your neck-MRI supposed to look after surgery?
will it then look like the left MRI ? be fusioned to have the LEFT curve ?

are there links to MRI pics from ppl before/after surgery ?

i dont see how they can create a curve with fusion...but i have not talked to a surgeon yet. i saw what appeared to be a fabulous chiropractor who explained that the spinal cord (?) has to stretch more than it should when the curve isnt right. also head is like 10 lbs and rests on 2 bone thingies and mine is at a wrong angle or something....and maybe some blood vessels are twisted up? i dont know

he said this can cause all kinds of problems with the autonomic nervous system...

 

[Daffodil]

Also, about the problem with "rushing surgery" by these few doctors.. Isn't a good test if you are a good candidate for the surgery the halo vest @jeff_w was wearing? IIRC it helped him pretty significantly, so couldn't just wearing this for a few weeks help people decide if they want to go for the surgery?

Dr. Gilete's secretary said that some patients do wear a cervical collar and feel so good with it, they wear it too much and weaken the muscles..so have a harder time wtih recovery after surgery. I bought a collar just to see if it might make me feel better but the instructions said you need a health professional to put it on you because your arms have to be down and whatnot so i didnt try it. But then the chiropractor i saw said to wear a soft one and only when i travel or cook.

 

[Daffodil]

I would be very careful with chiropractors and cci!

i am not letting him touch my neck....except with that AO instrument thingie. honestly, after 26 1/2 years of this, i am at my wit's end. i cant just go and fuse C0 - T1 to see if i feel better. My 84 yr old mom would have to take out a second mortgage besides. So I dont have a lot of options.

If there ever was a trustworthy chiropractor, though, its this one.

 

[leokitten]

Also, about the problem with "rushing surgery" by these few doctors.. Isn't a good test if you are a good candidate for the surgery the halo vest @jeff_w was wearing? IIRC it helped him pretty significantly, so couldn't just wearing this for a few weeks help people decide if they want to go for the surgery?

Cervical collars will do nothing if you have Chiari for example.

 

[Daffodil]

Cervical collars will do nothing if you have Chiari for example.

true but i dont have that

 

[talkinghead]

@Daffodil can I ask you how does your brain fog manifest?

 

[Daffodil]

@Daffodil can I ask you how does your brain fog manifest?

it is the worst feeling in the world. it is like my head is full of cotton, swollen, like there is a wall there preventing me from thinking clearly. i cannot concentrate on anything, forget words, forget thoughts, forget where i put things, etc. its like my IQ is down 50 pts. cant read a book

it used to actually be a lot worse but it is a little better after 5 yrs of antibiotics. it used to be so bad that i would cry myself to sleep every night. i honestly dont know how i lived through that.

it got better once during IV rocpehin but came back when i stopped the drug. even my CFS doc is stumped though thinks it could still be related to my leaky gut

 

[bjl218]

I'm not familiar with your history @Daffodil, but if your brain fog cleared as a result of antibiotics, could it be due to Lyme?

 

[Daffodil]

I'm not familiar with your history @Daffodil, but if your brain fog cleared as a result of antibiotics, could it be due to Lyme?

well, the only antibiotic it cleared with is rocephin, which also gets rid of excess glutamate in the brain...it also works in alzheimers...so who really knows why it worked. i tried several other IV antibiotics and nothing happened.

but, once rifaxamin helped for about a week (i tried it many times after but it never helped much). so perhaps leaky gut is involved...but the other IV antibiotics should have worked if leaky gut was involved because they would have worked on the bacterial overgrowth they find in my stool tests...and would have cleared the bacteria and neurotoxins in the blood

i did go from bedridden to 30 % functioning (once even 40%) after years of antibiotics ....and lyme antibiotics really resulted in yrs of herxing so perhaps it was a problem. it doesnt seem to be anymore.

and it is possible that compression of the spinal cord or brain stem is resulting in all this stuff as downstream affects....who knows? jeff had high EBV titres before his surgery and normal after.....

no one knows the puppet master yet...

 

[Murph]

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.)

https://twitter.com/i/web/status/1095864194484690945

EDIT: the forum software recently changed and is displaying tweets now about 5% of the time. Sorry. Clicking the link shown should still work.

 

[Murph]

Here's another person with a less certain view of the merits of CCI surgery.

https://twitter.com/i/web/status/1095884770406486017

I do not share this tweet to discourage anyone from getting the treatment they need.

This information is for other people.

The people on the fence. The passers-by who have no or very few CCI symptoms but are wondering if they should spend hundreds of dollars and lots of energy trying to get appointments for the right kind of MRI. The people who feel extremely surprised this could have been the answer all along but are unable to see anyone providing anything other than impetus towards surgery.

 

[Murph]

Here's Jen talking about the effect of CCI surgery on her.

https://twitter.com/i/web/status/1096449193927995398

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.

https://twitter.com/i/web/status/1096449144049319936

 

[StarChild56]

For those who got their MRIs what were the ICD-10 diagnosis codes they put on the order?

I don't know what the ICD-10 code is but my PCP used my cervical pain and radiculopathy as the reasons needed. And it had been 4 years since my last cervical MRI which already showed damage.

Edited to add that on the MRI report it noted the reason: Pain in the neck radiating down the left arm; headaches.

 

[StarChild56]

Is it possible to have CCI without having PEM? Physicaly I'm mostly ok, but I have variety of neurological symptoms, like sensitivity to light, vision issues, really bad sensory input gating (I feel like dying in stores), I mostly can't think straight (my brain litteraly gets stuck and feels like it's on fire), problems with time perception, tinnitus and stuff like that. I also have head pressure, headaches, stiff neck and pain in upper back. My arms go randomly numb, and when I'm walking for more than half an hour, muscles in my neck, upper back and arms start to get really tense and painfull. I have 1 bad disc in my neck according to standard MRI, and multiple down the line.. I don't have standard neck curvature, simiralrly to @Daffodil . I also have some hypermobility and pectum excavatum, which could mean undiagnosed EDS or some other soft tissue problem, that's why I'm thinking I could have CCI.

I'm not sure if I should get tested, because I won't get insurance coverage where I live and it's not cheap. Do you think it's worthwile to test this if I don't have classic CFS symptoms like PEM and physicaly can function? I've had back problems almost my whole life, but the neurological stuff started after EBV and hepatitis vaccination..

IMO regardless of PEM those tinnitus, head pressure, headaches, stiff neck, pain in upper back, arm numbness - for me would mean I need a good cervical MRI and I'd get the extra views at least to rule out CCI/AAI.
Sometimes you can get cheaper prices when paying outright for an MRI than what you see charged to insurance.

Even if not CCI/AAI - if you haven't had a recent cervical MRI it is warranted to find out what is going on with your neck...your neck can worsen a lot over time. It may lead you to PT which may really help.

 

[kangaSue]

it is the worst feeling in the world. it is like my head is full of cotton, swollen, like there is a wall there preventing me from thinking clearly. i cannot concentrate on anything, forget words, forget thoughts, forget where i put things, etc. its like my IQ is down 50 pts. cant read a book

it used to actually be a lot worse but it is a little better after 5 yrs of antibiotics. it used to be so bad that i would cry myself to sleep every night. i honestly dont know how i lived through that.

it got better once during IV rocpehin but came back when i stopped the drug. even my CFS doc is stumped though thinks it could still be related to my leaky gut

With SIBO, numerous metabolites are produced in the small intestine (including alcohol), leading to a variety of symptoms and can possibly include brain fogginess. I've also read it suggested that having even low levels of d-lactate can cause brain fogginess.

 

[talkinghead]

Even if not CCI/AAI - if you haven't had a recent cervical MRI it is warranted to find out what is going on with your neck...your neck can worsen a lot over time. It may lead you to PT which may really help.

I’ve had cervical MRI last August , few months after my neurological problems started. They found that I’m missing the neck curve and have one disc protrusion, but according to two neurologists it doesn’t explain my issues. There were also two discs protrusions in the visible part of my T spine (C spine MRI also catches some of the T spine) which according to doctors could explain some of my upper back pain but not the other issues.

 

[Daffodil]

With SIBO, numerous metabolites are produced in the small intestine (including alcohol), leading to a variety of symptoms and can possibly include brain fogginess. I've also read it suggested that having even low levels of d-lactate can cause brain fogginess.

but nothing i do gets rid of the leaky gut. what is causing it? where is this inflammation coming from?

 

[ScottTriGuy]

@Daffodil

Curious side question prompted because I recently spoke with a man with ME that was able to pinpoint D-Lactic Acidosis as causing his SIBO symptoms.

Have you been tested for that?

 

[Daffodil]

sure would be nice if i could get into the BTM group ..might help me make a more informed decision about treatment

 

[Daffodil]

@Daffodil

Curious side question prompted because I recently spoke with a man with ME that was able to pinpoint D-Lactic Acidosis as causing his SIBO symptoms.

Have you been tested for that?

yes but dont we all have some of that? it is a downstream affect i believe, of bacterial overgrowth of certain species...?