Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

[gbells]

It seems that CCI resembles SEIDs with POTS. People without POTS shouldn't have CCI. Correct?

 

[Rufous McKinney]

I don't have a caretaker. plus, what if come out the other side a paraplegic?!?

Body here refused dental implant. It never slept: the night before my husbands surgery, all I needed to do was drive 30 miles home, and I NEVER SLEEP and I AM SICK AS HECK from just that.

I don't know how people make it thru procedures. Your all so brave.

 

[ebethc]

I don't know how people make it thru procedures. Your all so brave.

I don't think it's brave, I think you learn what you can handle and most ppl here would do anything to be well. I've pushed through a lot, but I can recognize what's too much, too...

 

[toyfoof]

maybe there's a neurological tx aside from surgery that can help.... cranial sacral therapy has always helped, but I haven't been able to afford it, but there's a cradle on AMZN that's about $40 that I might try...

I just bought this: https://smile.amazon.com/gp/product/B005QBCL82/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1

It’s called the CranioCradle and my physio yoga class uses it so I knew it felt good. It comes with a little pamphlet of instructions of all the various ways you can place it, and it provides very gentle traction and helps your neck curve the right way. I haven’t tried all the positions yet but the few I have tried have felt very nice and less intense than the manual traction done by my PT. I recommend for gentle help (some of the placements are for in bed so it’s quite versatile too).

 

[ebethc]

I just bought this: https://smile.amazon.com/gp/product/B005QBCL82/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1

It’s called the CranioCradle and my physio yoga class uses it so I knew it felt good. It comes with a little pamphlet of instructions of all the various ways you can place it, and it provides very gentle traction and helps your neck curve the right way. I haven’t tried all the positions yet but the few I have tried have felt very nice and less intense than the manual traction done by my PT. I recommend for gentle help (some of the placements are for in bed so it’s quite versatile too).

that's exactly the one I had my eye on! let me know how you like it after more use... thx

 

[Seven7]

I don’t think it exclude. I was watching videos of plp w CCI and portural
Changes would correct the issues ( I will try to find link and post) so apparently not everybody w CCI looks like ME.
2) I think we have some kind of collagen degradation because I do noot
Sean to have EDS but a lot of
Us have something similar. I have a bone pop out at least once a month, I have a lot of
Issues on my hips and shoulder. I imagine the neck could be fair game.
So those who develop CCI could be
Just the bad luck
Of the join to develop to be the neck.
No we need to see if the remission is permanent. I have had about 4 remissions and I am more
Remitting relapsing so who knows!

 

[gbells]

I think a lot of what people would call a "bone out of place" is actually inflammation due to periostitis arising from an autoimmune response due to viral infections.

 

[Seven7]

I think a lot of what people would call a "bone out of place" is actually inflammation due to periostitis arising from an autoimmune response due to viral infections.

Mine actually come out, I go
To chiro, sometimes to urgent care. I cannot always put them back myself. So in my case is confirmed out of joint.

 

[Mary]

It seems that CCI resembles SEIDs with POTS. People without POTS shouldn't have CCI. Correct?

Interesting question - I don't have POTS and I don't have CCI, but I know many people do have POTS without CCI. Though I do have some neck issues, but nothing close to the severity of Jen, Jeff and others here.

 

[Mary]

It comes with a little pamphlet of instructions of all the various ways you can place it, and it provides very gentle traction and helps your neck curve the right way.

Hi @toyfoof - This looks interesting - thanks for posting! Do the instructions show how to use it to help your neck curve the right way? That's my issue, my neck curve is reversed.

 

[gbells]

Mine actually come out, I go
To chiro, sometimes to urgent care. I cannot always put them back myself. So in my case is confirmed out of joint.

Chiropractic subluxations can't be confirmed. It is considered a questionable diagnosis. Two chiropractors won't even agree on the same subluxations (interexaminer reliability).

https://www.chirobase.org/05RB/AHCPR/08.html

"Palpation for pain is the only spinal assessment procedure to show consistent reliability in a number of studies. "

https://www.ncbi.nlm.nih.gov/pubmed/8409784?dopt=Abstract

This means all the chiropractic assessments don't work and pain is very nonspecific.

 

[toyfoof]

Do the instructions show how to use it to help your neck curve the right way? That's my issue, my neck curve is reversed.

I’ll take a picture tomorrow and post it. I can’t remember now if the instructions say this, or if my yoga instructors did. I also have reverse lordosis, and I find the very gentle stretching when lying on the CranioCradle to feel very nice. I just came off of it, actually!

 

[Gingergrrl]

I’ll take a picture tomorrow and post it. I can’t remember now if the instructions say this, or if my yoga instructors did. I also have reverse lordosis, and I find the very gentle stretching when lying on the CranioCradle to feel very nice. I just came off of it, actually!

I would love to learn more about this, too, @toyfoof and what you think of the product after you try it for a while. I also had "lack of lordosis" on my cervical MRI. Recently in addition to chronic pain on the right side of my neck and right arm, I wake up every morning w/severe pain in my lower back and tailbone area (no idea why)? I had wondered if there was some kind of at home product that I could try and am very curious about the CranioCradle that you posted and if it could help me?

 

[toyfoof]

I had wondered if there was some kind of at home product that I could try and am very curious about the CranioCradle that you posted and if it could help me?

I haven’t had a chance to take pics of the pamphlet yet, but the website has a lot of testimonials and some videos (I’d hoped it would have the info on the pamphlet but I don’t see it): https://www.craniocradle.com/

I’m going to my yoga class now and I’ll try to ask them if they recommend this for reverse/lack of lordosis issues and if they have any cautions for those of us with potentially weak collagen and cervical spines.

 

[toyfoof]

Recently in addition to chronic pain on the right side of my neck and right arm, I wake up every morning w/severe pain in my lower back and tailbone area (no idea why)?

I’m having this, too, I think because I’ve been a bit more active lately. Last night after resting my neck on the CranioCradle, I put it under my lower back/SI joint area (per instructions on the pamphlet). I was sore when I came off it, but I woke up this morning with no pain there!

 

[Pondering]

This might seem like a stupid question but what is the point of this thread? What outcome are you looking for by starting it?

 

[Rufous McKinney]

This might seem like a stupid question but what is the point of this thread?

this thread started as a side conversation in the larger thread on Jen Brea....reporting her remission post surgery...so it was moved to its own topic.

 

[Gingergrrl]

This might seem like a stupid question but what is the point of this thread? What outcome are you looking for by starting it?

The moderators split another thread into two separate threads (and this is the second one) b/c the original was re: JenB's recovery and some people were questioning if remission from CCI/AAI surgery means that the person never had ME/CFS (and now the thread is a little off topic which often happens here )

 

[ebethc]

it's important to know 1) how doctors will interpret this new information, and 2) how insurance companies will interpret this information. arguably, #2 is more important. for example, is there a insurance diagnosis code for CFS, and if there is, what is covered? do insurance companies still view CFS as a dx of exclusion, and if so is this CCI, etc., pathway something that has to be excluded before a CFS diagnosis? Will they interpret CCI, etc., as synonymous with CFS?

no matter what we as patients believe (ie, the perception/belief that CCI, etc., is still CFS, and that CFS is an end-state w many tributaries), the financial impacts of what an insurance company will cover and what it won't, and how it interprets this information are extremely crucial. Likewise, the medical community will interpret in a way that may or may not benefit me.... If someone has CCI AND a public persona, then CCI WILL become synonymous w CFS to ppl outside the community who are watching movies and videos about CFS? probably.... Frankly, for someone like me, these points are all I care about (vs the "academic" or conceptual points of view and definitions from within the community, which literally have no material impact on my situation...).

If you're rich or live in a country w good/decent government coverage it's hard to understand how healthcare drives ppl to financial ruin.

 

[panckage]

Yes, just like she was falsely and incorrectly diagnosed with ME. That was my point!

I think a good analogy is HIV and AIDS. HIV does cause AIDS, but HIV is not the only way one can way to get AIDS.

CCI can cause ME it seems but how common that is we do not know

Jenn met the diagnostic criteria for ME/CFS so as far as medicine is concerned she had it. The way she acquired ME was very ordinary as well. CCI may be a major cause of ME or not. It is really way to early for medicine to address