Tracking CCI / AAI MRI & Treatment outcomes

[sb4]

This past year, I've discovered that doing some self-acupuncture in my brainstem area dramatically improved the flexiblity in my neck, and likely got a lot more energy flowing in that area that had been blocked. I'm also doing a number of other stretching and massaging techniques, all to keep my neck area as stable as I can. When I drop off on these disciplines, my neck can quickly become much worse. It can become worse even if I do continue with them.

Could you expand on what you are doing re acupuncture on brainstem area? I imagine its tricky getting needles in the back of the neck. Have you noticed any diference in overal symptoms from this or just neck flexability?

As for the fasting I did a lengthy fast a while back and whilst my symptoms where reduced during the fast I put this down to not eating as they all came back when the fast ended.

 

[EnigmaCo]

And one more thing I want to add on here...

Jennifer Brea mentioned something very interesting; and that's that anything that upsets the spine/brain can give major problems and a wide range of MCAS and inflammatory symptoms. I totally agree with her on this matter... She didn't have only CCI and AAI, but also TC and still struggles with MCAS reactions. And in her first years she improved on antivirals...
It's an old article but I suggest u all to read if able to: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708556/

Also we must not forget that both Jen Brea and Jeff Wood took ME seriously FROM THE START and had good support. In my honest opinion: better than I did and had... So they have done little damage to their bodies and therefore- in my opinion - had the best outcomes after surgery. Some of us were forced to exercise, work, didn't have the choice nor resources to rest or had the assumption they weren't sick at all due to the incompetent system and surroundings....

 

[cfsmri]

Is there anyone here who could look at my results from a 3.0 supine MRI?

https://imgur.com/a/nvI7lX4

 

[rel8ted]

So sorry to hear Mattie.

What's your plan now?

I am going to be honest. Did the same surgery and I also crashed despite little progress and still wondering if I did good or not...

ME in my case and opinion is way more complicated than just CCI/AAI. I am going to test for tethered cord though; high suspicion but I don't know.... It seems endless sometimes.

I am severe btw....

MY neurosurgeon also suspects OTC after my cervical fusion. The thought of another surgery is less than appealing. I felt a bit better at first, but now have even less energy and stamina than before. The end result is a wash, but I had cord compression and it was a serious situation.

 

[EnigmaCo]

Update:
Almost all progress has been lost in the last 4 weeks.

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.

One question Mattie...

It's important for us to know I guess. May I ask HOW you declined? Did u catch a virus? Did u push urself? Or was it just overnight?

For me; I catched a virus and the whole building collapsed once again....

 

[HansG]

I‘m so sorry for all of you, that surgery didn‘t solved your isssues. But thank you all for talking about this! Its not easy, I guess... Though, so important for investigating the ME CCI link open minded.

@EnigmaCo And your symptoms and severity are almost as before? Or did maybe a specific symptom improved somehow?

 

[mattie]

One question Mattie...

It's important for us to know I guess. May I ask HOW you declined? Did u catch a virus? Did u push urself? Or was it just overnight?.

That's 3 questions
No signs of virus/corona. Did not push myself. Not overnight but gradual decline in about 4 weeks.

I guess an important question is: Did the surgery resolve PEM?
In my case it did not. I "only" improved from severe to moderate and temporarily so.
Moderate ME still means lots of PEM. And still really sick.

If fusion surgery did not resolve PEM, then CCI and / or AAI were not causing it.
AAI can be asymptomatic (very prevalent in Down's).
Translational BAI and or BDI can also be asymptomatic.
Dr. G. said to me: "The measurements alone mean nothing. Only if the measurements can be linked to your symptoms surgery could be an option."

 

[EnigmaCo]

I‘m so sorry for all of you, that surgery didn‘t solved your isssues. But thank you all for talking about this! Its not easy, I guess... Though, so important for investigating the ME CCI link open minded.

@EnigmaCo And your symptoms and severity are almost as before? Or did maybe a specific symptom improved somehow?

Same as before...

 

[HansG]

@EnigmaCo So sorry to hear. Whats your idea about your initial improvements?

[...]Also we must not forget that both Jen Brea and Jeff Wood took ME seriously FROM THE START and had good support. So they have done little damage to their bodies and therefore- in my opinion - had the best outcomes after surgery. Some of us were forced to exercise, work, didn't have the choice nor resources to rest or had the assumption they weren't sick at all due to the incompetent system and surroundings....

I think Jeff studied fulltime for additional 2 years from onset. Didnt sound like a lot of pacing in my ears. As I understand him, In the following years he declined and was finally in a terrible shape. Don‘t think one can say he took it seriously right from start. I wonder what @jeff_w would say about?

Dont know what @JenB did at the beginning. Denying, pacing...? She might would like to say something about?

 

[EnigmaCo]

@EnigmaCo So sorry to hear. Whats your idea about your initial improvements?



I think Jeff studied fulltime for additional 2 years from onset. Didnt sound like a lot of pacing in my ears. As I understand him, In the following years he declined and was finally in a terrible shape. Don‘t think one can say he took it seriously right from start. I wonder what @jeff_w would say about?

Dont know what @JenB did at the beginning. Denying, pacing...? She might would like to say something about?

I really don't know tbh... Maybe the amounts of sleep and real rest after surgery? I felt like really resting until I crashed a month ago...

When I talked to dr. Gilete I told him I am a severe case and all of my problems (like gut issues on a daily basis, liver pains, heavy mcas, etc...). He acknowledged it. But before the decision I had an 2nd opinion in Holland at a neurosurgeon who confirmed my CCI and AAI diagnoses. And the MRI's showed signs of lower back problems...

So he (dr. G) told me honestly he couldn't guarantee anything because he's not a ME specialist...

On your second thing concerning @jeff_w and @JenB my thing is I didn't have the opportunity to rest. Like really rest. My first onset was a fever of 42 degrees and I woke up literally from death. My second big crash was a collapse in the shower which left me bedbound 5,5 years prior surgery. In this circus: I didn't have a steady home, support, income, was forced to work, and so on...

I am not saying that this ruined everything for me, but it played a major part...

So my point and question is; are mechanisms like CCI and AAI the true underlying cause of ME or is it correlated to each other some way?

Again, time will tell....

 

[Grigor]

are mechanisms like CCI and AAI the true underlying cause of ME or is it correlated to each other some way?

If it is correlated then I feel it's a consequence and not the underlying cause. Indeed time will tell.

Really sad to hear that your surgery didn't work out as well either. Interesting you relapsed after an infection.

How long was it after the surgery that you relapsed?

 

[Bowser]

Does anyone know how CCI/AAI is supposed to cause intracranial hypertension?

We know @JenB 's IH resolved after fusion but I'm not sure what exactly was the mechanism that caused IH to develop from CCI/AAI.

 

[EnigmaCo]

If it is correlated then I feel it's a consequence and not the underlying cause. Indeed time will tell.

Really sad to hear that your surgery didn't work out as well either. Interesting you relapsed after an infection.

How long was it after the surgery that you relapsed?

5 months approx

 

[HansG]

@EnigmaCo Have you been in full remission during theese 5 month? Or how big was your improvement?

 

[EnigmaCo]

@EnigmaCo Have you been in full remission during theese 5 month? Or how big was your improvement?

No like very severe to moderate....

 

[EnigmaCo]

That's 3 questions
No signs of virus/corona. Did not push myself. Not overnight but gradual decline in about 4 weeks.

I guess an important question is: Did the surgery resolve PEM?
In my case it did not. I "only" improved from severe to moderate and temporarily so.
Moderate ME still means lots of PEM. And still really sick.

If fusion surgery did not resolve PEM, then CCI and / or AAI were not causing it.
AAI can be asymptomatic (very prevalent in Down's).
Translational BAI and or BDI can also be asymptomatic.
Dr. G. said to me: "The measurements alone mean nothing. Only if the measurements can be linked to your symptoms surgery could be an option."

Did Jeff Wood had an operation on TC?

 

[frozenborderline]

Did Jeff Wood had an operation on TC?

Yes

 

[EnigmaCo]

MY neurosurgeon also suspects OTC after my cervical fusion. The thought of another surgery is less than appealing. I felt a bit better at first, but now have even less energy and stamina than before. The end result is a wash, but I had cord compression and it was a serious situation.

Are you considering to do another surgery despite the 'less than appealing' part?

 

[rel8ted]

Are you considering to do another surgery despite the 'less than appealing' part?

Not a chance. I have EDS and therefore a higher chance that the cord could re-tether or have other complications. Have not returned to baseline 5 months out from the ACDF which is a much less invasive surgery.

 

[EnigmaCo]

Not a chance. I have EDS and therefore a higher chance that the cord could re-tether or have other complications. Have not returned to baseline 5 months out from the ACDF which is a much less invasive surgery.

Is your conclusion that the surgery made you worse?