Tracking CCI / AAI MRI & Treatment outcomes

I have been tested for CCI / AAI / Chiari / Spinal Stenosis with specific scans and tested

  • Positive

    Votes: 84 76.4%
  • Negative

    Votes: 26 23.6%

  • Total voters
    110

mattie

Senior Member
Messages
376
Update:
Almost all progress has been lost in the last 4 weeks. :(
Studies have shown that invasive procedures produce a stronger placebo effect than non-invasive ones, said researcher Jonas Bloch Thorlund of the University of Southern Denmark. A pill can provoke a placebo effect, but an injection produces an even stronger one. Cutting into someone appears to be more powerful still.

So I guess this was all a full year of placebo. Did not expect this at all, but not sure how else to explain it.
Or maybe the FMT I tried shortly before surgery provided some temporary improvements... We’ll never know.


If I can crash to the state I am currently in, the CCI operation clearly did not “solve” anything.

I took a calculated risk. It did not work out for me.

So think twice before choosing cci surgery based solely on having ME and translational BAI/BDI.
Get a second opinion. Try invasive traction first.
 

frozenborderline

Senior Member
Messages
4,405
Its interesting what you post about placebo from invasive treatments. I'm not sure I believe that can happen as readily in severe ME as in other diseases, bc of the severe impairments in energy. But I'm definitely open to it

It seems like gilete overdiagnoses. At least he provides his measurements for transparency purposes and his lines up with bolognese who I trust more, but I've only rarely heard of him not diagnosing someone w cci, whereas that happens a lot with bolognese and henderson
 

MEPatient345

Guest
Messages
479
So I guess this was all a full year of placebo. Did not expect this at all, but not sure how else to explain it.
Or maybe the FMT I tried shortly before surgery provided some temporary improvements... We’ll never know.


If I can crash to the state I am currently in, the CCI operation clearly did not “solve” anything.
I’m so sorry to hear it Mattie. In my own experience of placebo, of which I’ve had many, even just changing where I lived, changing my routine, caused me to try to increase my activity levels and try new things and believe for a while that I could do more— but eventually realize I was just doing more, not enjoying it or able for it, or -paying for it afterwards.. but I wanted to believe at the time that I had improved. Also had the same with new supplements or medications.

Placebo is a strong effect.. I suspect this will be the case for others who have had surgery. I have noticed that some who think they see improvement in first six months, then have many issues or lose the improvement. It’s hard to tell currently bc so many people need tethered cord surgeries or other surgeries. We won’t know till they’ve had those, and healed from those, how successful it was ultimately.

Anyway I am so sorry.. lots of hugs. 😓
 

pibee

Senior Member
Messages
304
1 year post-op update

M.

I am sorry, mate.

POTS is autoimmune, in 90% cases, and I guess in 100% if you count in some cardiologist tend to misdiagnose other similar conditions as POTS (i know personally few cases who were diagnosed as POTS and actually dont have it, and not a surprise, they dont have positive antibodies to adrenergic and muscarinic receptors either). There is a recent research addressing this issue of overdiagnosing POTS.

Thus, no wonder CCI did not work. Better try IVIG... worked for my POTS.
good luck.


p.s. my personal experience: post-IVIG i had MCAS flare (shortly, later i benefited) and got 1st time in life symptoms of hypermobile EDS (again mild, but i never felt that!) and i felt my head is "sinking" to the back, ... so I guess some hypermobility of CC joint too. :-/
So i view it in my case and prob many others, esp those w POTS, just another consequence of autoimmunity...
 

MEPatient345

Guest
Messages
479
After CCI and related surgery, 36% of ME/CFS patients found their POTS was immediately cured, and another 29% found a major improvement in their POTS. See the CCI survey for info.

So in fact CCI surgery often seems to work well for POTS.
I have noticed that many patients symptoms change repeatedly over the initial 12 months after first surgery, or with additional surgeries.. so perhaps it’s a little early to say this. (I don’t know how often people are returning to update the form.)
 

Hip

Senior Member
Messages
18,135
I have noticed that many patients symptoms change repeatedly over the initial 12 months after first surgery, or with additional surgeries.. so perhaps it’s a little early to say this. (I don’t know how often people are returning to update the form.)

That's interesting. I have not been following the CCI Facebook groups hardly at all in recent months, so I am not really that up to date with what's going on there.

The percentages I gave came from the survey question about how people's symptom changes immediately after surgery. Amazingly, POTS appears one of the symptoms that gets fixed overnight after surgery. There is also corresponding question about their long-term improvement / worsening in symptoms.
 

pibee

Senior Member
Messages
304
After CCI and related surgery, 36% of ME/CFS patients found their POTS was immediately cured, and another 29% found a major improvement in their POTS. See the CCI survey for info.

So in fact CCI surgery often seems to work well for POTS.


Allow me to remain sceptical. As I mentioned, POTS-like syndromes sometimes misdiagnosed as POTS, you can easily find study recently published that explains this issue.
I have a friend who is so fanatically convinced she has POTS, even though she does not have it, but similar syndrome (without classical +30 average increase on tilt that she did 3x , without antibodies...), , that she managed to get a diagnosis from 3-4 doctors, and she doesn't have POTS!
Her ME and POTS-like symptoms started soon after car accident.
I heard of other examples of wrongly diagnosed usually by cardiologists, not neuro.

Major improvement in POTS is another broad statement.
 

Hip

Senior Member
Messages
18,135
As I mentioned, POTS-like syndromes sometimes misdiagnosed as POTS

I understand that a POTS diagnosis is one of the most simple and clearcut medical tests you can get: if your heart rate increases by at least 30 points on becoming upright from a relaxed lying down conditions, then you have POTS. Simple as that.

Are you saying that there are some POTS-like syndromes which also satisfy this 30 point increase, but which are not POTS?
 

sb4

Senior Member
Messages
1,768
Location
United Kingdom
Allow me to remain sceptical. As I mentioned, POTS-like syndromes sometimes misdiagnosed as POTS, you can easily find study recently published that explains this issue.
Are you saying that there are some POTS-like syndromes which also satisfy this 30 point increase, but which are not POTS?

I think the answer is in between. I have an official diagnosis of POTS confirmed by 2 tilt table tests (and other such tests).

I have been ill for 9 years, and I have experienced autonomic symptoms that entire time. (Gastroparesis, heart pounding, little to no sweat, etc). However I only experienced the tachycardia aspect of POTS for around 2 years when I was at my very worst.

Now I would probably pass a tilt table test as normal as my HR seems to have become more undercontrol. However if I have a bad day, or it's too warm, or I have just eaten, etc I would probably fail the tilt table again.

I still have all the autonomic symptoms I have had from the start, my heart pounding is still my worst symptom, heat, food, carbs, exacerbate my condition; however I would probably be declared in remission if my POTS docs gave me another TTT.

So I think POTS is certainitly a thing and is somewhat useful as a diagnosis however it's not a you either have it or you don't sort of thing, more of a spectrum. I hope that makes sense.
 

frozenborderline

Senior Member
Messages
4,405
POTS is autoimmune, in 90% cases,
We all have different theories on this forum, but normally with theories one frames them as "I think x is the cause of y". Since there isnt adequate research on any of these conditions I dont know how anyone could confidently state they know the ultimate cause of pots.

My pots is better wearing a collar and even better with mold avoidance, neither of which are treatments for autoimmune disease ...
 

frozenborderline

Senior Member
Messages
4,405
I am having a lot of up and downs post surgery also. I still feel better, a lot better at times but the fusion definitely did not cure my ME.
Do you think that it changed you from severe to moderate? Or a smaller change than that ?

It is concerning, while reading all these recent anecdotes, to see so much variance in results from such an invasive procedure. Wish this was studied in Me/cfs so had more idea of what to expect
 

Gingergrrl

Senior Member
Messages
16,171
Update: Almost all progress has been lost in the last 4 weeks. :(

I am so sorry to hear this @mattie and was really hoping for the best and rooting for you! :cry: :hug:

So I guess this was all a full year of placebo.

I apologize if you already explained this but do you think it's possible that the surgery initially provided some improvement (vs. placebo) but that it was not enough to sustain itself?
 

pibee

Senior Member
Messages
304
We all have different theories on this forum, but normally with theories one frames them as "I think x is the cause of y". Since there isnt adequate research on any of these conditions I dont know how anyone could confidently state they know the ultimate cause of pots.

My pots is better wearing a collar and even better with mold avoidance, neither of which are treatments for autoimmune disease ...

well, i think 95% of relevant POTS researchers are all considering there is enormous amount of proofs and indications it's autoimmune.
I didn't quote research because it's easily available, I would guess PR members are very good at finding research if they wan't to.
But as most studies published 90% of POTS patients have antibodies, or some say 50%, Hashimoto has 90% positive, and it's one of rare diseases with so clear biomarker.
There was some question of the method of testing but they did find positive muscarinic antibodies are reliable, while adrenergic are still problematic as methodology of testing them and possible interference with adrenaline in plasma.

Mold avoidance could be relevant in autoimmunity, as MCAS is. I have confirmed Sjogrens and Hashimoto and I feel 10x better whenever it's not raining, dry weather.

Did you ever check if you have POTS antibodies ?
is your POTS typical, and diagnosed on proper tilt text that measured BP 2x within second?
The mentioned friend has rapid changes of BP within seconds that can be recorded only wite BP monitor measuring it from finger 2x in 1 second, her HR varies, spikes, but it's not POTS, she is only one I know negative for CellTrend antibodies ( as it matches 90% online as well as in research),, and HR is not sustained +30 average increase.
So i guess small part of (mis)diagnosed w POTS have very similar condition that might not be autoimmune.
 

frozenborderline

Senior Member
Messages
4,405
Man, i think 95% of relevant POTS researchers are all considering there is enormous amount of proofs and indications it's autoimmune.
If there was a consensus this broad, I'd think the disease would be much easier to treat.

I'm no expert on autoimmune diseases but the presence of some antibody is not necessarily an open and shut case that shows POTS is caused by autoimmunity. Some people have some levels of antibodies that dont correlate with anything clinically.

Also some of the private labs that do antibody panels for adrenergic antibodies and autoantibodies in general are somewhat controversial.

I seriously don't mean to be rude, but it's a bit brash to assume that you have the answer to a complex syndrome figured totally out when it's fairly opaque even to top researchers. And I dont know where you get the 95 percent figure. Rowe is one of the top pots researchers for example and he takes the cervical spine compression connection to POTS seriously.

Imo, pots can have many causes. When it occurs in Me/cfs I think it tends to be paired with low blood volume and I think it could be caused by brainstem inflammation from toxic exposure, or brainstem compression, or both. But that's just a theory
 

frozenborderline

Senior Member
Messages
4,405
@debored13 I know, it is also a mystery to me. I thought a lot about how and why the results seem to be so different. I feel like it has a lot to do with how you treat all the other conditions, especially MCAS and possible mold issues!
Mold avoidance is one variable that has consistently produced results for me (although not curing my cci, improves my pots and PEM and brain fog a lot), so I'd hope that if I combined mold avoidance with surgery I could get results.

Have you ever tried taking trips to pristine outdoor areas?

I wish all these variables were studied and more controlled for , in general. None of us should have to deal with making major decisions with this little information. Are there even any studies at all on cci and me/cfs yet?
 

pibee

Senior Member
Messages
304
If there was a consensus this broad, I'd think the disease would be much easier to treat.

I'm no expert on autoimmune diseases but the presence of some antibody is not necessarily an open and shut case that shows POTS is caused by autoimmunity. Some people have some levels of antibodies that dont correlate with anything clinically.

Also some of the private labs that do antibody panels for adrenergic antibodies and autoantibodies in general are somewhat controversial.

I seriously don't mean to be rude, but it's a bit brash to assume that you have the answer to a complex syndrome figured totally out when it's fairly opaque even to top researchers. And I dont know where you get the 95 percent figure. Rowe is one of the top pots researchers for example and he takes the cervical spine compression connection to POTS seriously.

Imo, pots can have many causes. When it occurs in Me/cfs I think it tends to be paired with low blood volume and I think it could be caused by brainstem inflammation from toxic exposure, or brainstem compression, or both. But that's just a theory

Never heard of Rowe, must not be affiliated with Dysautonomia International

What I say, or think, it's not relevant, it's relevant that there is strong indication that it's autoimmune and of course there will be another few years before that's accepted.
You can easily find more information, they don't base that opinion only on antibodies, there are certain criteria when disease is accepted as autoimmune, POTS is very close to fullfill all the criteria. Like passive transfer of antibodies to animal , causes POTS.

Exactly for the reasons you mentioned like questionable antibodies testing. But they are using various methods to circumwent that.
I personally tested via 2 methods, enough for me next to Sjogrens and Hashi and extremely good response to IVIG .
Tested with CellTrend ELISA, which has problem with adrenergic antbodies, but not muscarinic.
and tested with dr Wallukat's method from BerlinCures, bioassay where he measures activity of those antibodies - how much they change activity of the adrenergic/muscarinic receptors.
I was positive on both, although on Wallukat i didnt have alpha adrenergic, but I had beta and Muscarinic 2.

Btw no, those antibodies are not one of those that appear in other people too (like probably invalid Cunningham panel!) it's quite specific for POTS and for rheum.diseases in general, and the cut off is of course set at 2st dev anyway.
BTW, another funfact is that Dysautonomia International also did study for early Sjo antibodies and found them in almost 50% of POTS patients who don't test positive for ANA/SSA.... I had POTS for 20 years befoe EVER feeling any eye/mouth dryness or any non-neuro symptom except bit of parotid swelling 15 years ago when my POTS got activated, and now it turns out I have Sjogrens all this time.
My ME friend, without POTS, without any dryness symptoms, turns out he has Sjogrens too, with negative ANA. i forced him to do lip biopsy because of SFN and positie SSA, and lip biopsy -which is gold standard for Sjogrens, was extremely positive! He has 99.9% neuro sympotms.

I was intentionally blunt because I don't want people to undergo extrremely invasive surgeries like CCI while the underlying cause of the disease is totally something else.
Not speaking of all people, ME probably is not autoimmune. I had ME of varying levels - at some point couldn't even read, and for me it's related to gut, when they destroyed my gut with antibiotics (ceftriaxone) I got quite severe ME, luckily, it reduced with essential oils -again for gut/SIBO and with time that slowly recovered my gut.

But if I had POTS, man, and i test positive on more than 1 of those antibodies, I'd seriously think about the real cause of my disease.
Even if CCI, as i remember -it's found in 50% of RA people?!
 
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MEPatient345

Guest
Messages
479
@debored13 I know, it is also a mystery to me. I thought a lot about how and why the results seem to be so different. I feel like it has a lot to do with how you treat all the other conditions, especially MCAS and possible mold issues!
I went from 90% bedbound to 90% homebound. Of course I was hoping for more but I am still grateful.
Hi Julia, would you consider updating the FB group with your progress too? I think it’s important to hear more detail from people who have had surgery.
 
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