Tracking CCI / AAI MRI & Treatment outcomes

[pibee]

I think its incorrect, many people have orthostatic hypotension and have pots. They are not mutually exclusive.

Which type? NOH yes, but NOH usually happens later during tilt, not within first 3minutes. NOH also goes w antibodies. While other forms of OH, like IOH, are not neurogenic.

Every definitionof POTS i ever read says "increase of 30 in HR in absence of orthostatic hypotension". What am I missing?


interesting: i had very high all antibodies that are found in NOH not only POTS, i never fainted but in tilt i had slight drop in BP .. highest was 17/10, as I had at the same time hypertension, that was considered normal drop, (because criteria for OH in hypertension is 30/20, and for normal BP is 20/10), I was dehydrated then a bit, all other times my BP dropped a bit, 10-5,
but after IVIG my BP never drops again on tilt, i had 5 tilts in 1 year - think I'm guinea pig for them - it always goes up a big for 10/6 or so, and my antibodies panel changed a lot, with much more negatives.

 

[GloriaDG]

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.

Sorry to hear that Mattie. But why putting it down solely to placebo and not being open about the possibility that you might have another structural issue that should have been addressed in conjunction with CCI? For instance, Jen, Jeff and many other patients had tethered cord surgery in conjunction with CCI surgery. Jen herself said that if it wasn't for Tethered Cord release she probably would have never improved the way she did.

 

[mattie]

But why putting it down solely to placebo

As I said, that is what I think is going on.

not being open about the possibility that you might have another structural issue

But I am. That is why I was tested for papilloedema (negative). I also had an MRV and had it reviewed by 6 people (4 MD's). I wrote a lot about it in this thread.

many other patients had tethered cord surgery

I have 0 symptoms of tethered cord.

 

[EnigmaCo]

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....

 

[frozenborderline]

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

Wow. I've heard of people only improving a moderate amount but these two cases are the first I've heard of people not improving at all. I think they need to be publicized more.

Have you two filled out @Hip s survey?

What were the details of your case? What were your measurements, what surgeon diagnosed you, did you have invasive traction before surgery, did you benefit from reaction or wearing a collar? How long ago did you have the surgery? Did you have mcas beforehand ?

 

[frozenborderline]

Sorry to hear that Mattie. But why putting it down solely to placebo and not being open about the possibility that you might have another structural issue that should have been addressed in conjunction with CCI? For instance, Jen, Jeff and many other patients had tethered cord surgery in conjunction with CCI surgery. Jen herself said that if it wasn't for Tethered Cord release she probably would have never improved the way she did.

I think that it's a bit much to expect someone who's gone through an invasive procedure based on a leap of faith that it is associated associated with ME, to do other invasive procedures based on novel and sometimes controversial testing (I dont say this to feaemonger, I think that occult tethered cord is a real phenomenon, but it s definitely new and you have to have a lot of trust in your surgeon for this) before they can simply say "this didn't work"

 

[Hip]

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...

You might like to include your negative result in this CCI survey. It's important to record negative results, as well as positive results.

 

[GloriaDG]

I think that it's a bit much to expect someone who's gone through an invasive procedure based on a leap of faith that it is associated associated with ME, to do other invasive procedures based on novel and sometimes controversial testing (I dont say this to feaemonger, I think that occult tethered cord is a real phenomenon, but it s definitely new and you have to have a lot of trust in your surgeon for this) before they can simply say "this didn't work"

I'm not expecting Mattie to pursue other novel or controversial investigations and testing at all. I understand his concerns very well, and I would have had them too if I was in his position. I can't imagine though, how disappointing and heartbreaking must be loose all the progress made over a year and after spending so much money. I'm really sorry for that.
What concerns me personally, is the fact the all the progress made is now being attributed to placebo, without acknowledging the possibility that there might have been something else going on, like it happened with many other people who undergoes CCI surgery. Both Jen and Jeff had other structural issues that required time and a huge number of tests to figure out (I'm not saying that Mattie has those diagnoses specifically).
I feel that the message that is being sent out is that most of the people that undergo this procedure most likely improve because of placebo. This, from my perspective, invalidates the efforts of thousands of patients (not just ME, but EDS patients especially) that have got greater benefits from these surgeries and are fighting hard to get their structural diagnoses recognised by mainstream medicine. By saying that I don't mean that Mattie shouldn't share his experience, rather the contrary. We need to examine all patients' experiences to collect data. But the aim to collect data should be to observe, learn and try to figure out this puzzle by putting the pieces together. Instead, attributing illness or recovery to the mind (because placebo is just a mind trick) is what it's been done with ME for decades. And I feel like we're doing it again here.
The fact that he improved for a year and then got worse should be an opportunity to ask further questions, because scientific research starts by asking questions. Instead, we're all here dismissing the whole thing by blaming the mind once again and moving on to the next theory.

 

[frozenborderline]

What concerns me personally, is the fact the all the progress made is now being attributed to placebo, without acknowledging the possibility that there might have been something else going on, like it happened with many other people who undergoes CCI surgery. Both Jen and Jeff had other structural issues that required time and a huge number of tests to figure out (I'm not saying that Mattie has those diagnoses specifically).
I feel that the message that is being sent out is that most of the people that undergo this procedure most likely improve because of placebo. This, from my perspective, invalidates the efforts of thousands of patients (not just ME, but EDS patients especially) that have got greater benefits from these surgeries and are fighting hard to get their structural diagnoses recognised by mainstream medicine. By saying that I don't mean that Mattie shouldn't share his experience, rather the contrary. We need to examine all patients' experiences to collect data. But the aim to collect data should be to observe, learn and try to figure out this puzzle by putting the pieces together. Instead, attributing illness or recovery to the mind (because placebo is just a mind trick) is what it's been done with ME for decades. And I feel like we're doing it again here.

I didn't read what matty said as suggesting that jen and Jeff's improvements were placebo. I think he was just speaking about his own case. It's a rreasonable theory and shouldn't be concerning to anyone.

Matty was also diagnosed based on looser criteria and a less in depth evaluation than jen and jeff.

I dont think its definitely placebo, but it could be. It could also be random/regression to the mean.

And if the only way to figure out whether its placebo is to do another invasive procedure, I would say it makes sense he doesnt want to.

In my opinion cci makes sense as a core pathology in many me/cfs cases. But I also think mcas and general inflammation that caused the cci is important.

I wish we could control for all of those variables, but it's hard to treat mcas and do mold avoidance, so it's not something that is easy to recommend to people in that position.

It doesn't seem like many of the people who've had cci surgery have done really strict mold avoidance post surgery, that would be an interesting thing to test the effect of. Lile I said , multiple variables, but it's possible its placebo. I hope for matty's sake that it isnt

 

[mattie]

I didn't read what matty said as suggesting that jen and Jeff's improvements were placebo. I think he was just speaking about his own case. It's a rreasonable theory and shouldn't be concerning to anyone.

Correct. I obviously never said anything like that about Jeff or Jens case. Only speaking for myself here. I also would never compare my case to theirs. And indeed I was diagnosed based on much looser criteria.

And if the only way to figure out whether its placebo is to do another invasive procedure, I would say it makes sense he doesnt want to.

Yeah it would be kinda nice to base invasive surgery on proper diagnosis. Not going to have a non-approved stent shoved into my IJV based on some vague hypothesis.

What's your plan now?

No plan.

 

[frozenborderline]

This, from my perspective, invalidates the efforts of thousands of patients (not just ME, but EDS patients especially) that have got greater benefits from these surgeries and are fighting hard to get their structural diagnoses recognised by mainstream medicine. By saying that I don't mean that Mattie shouldn't share his experience, rather the contrary. We need to examine all patients' experiences to collect data. But the aim to collect data should be to observe, learn and try to figure out this puzzle by putting the pieces together. Instead, attributing illness or recovery to the mind (because placebo is just a mind trick) is what it's been done with ME for decades. And I feel like we're doing it again here.

I dont think it invalidates me/cfs patients to attribute ones own symptoms to placebo. It's not saying ME is psychological. Placebos are more complex than just psychological and they induce objective changes in patients with cancer and other diseases.

I think "random " variation might be more likely.

I put random in quotes bc there are often overlooked, ubiquitous factors in this disease that we havent nailed down causing the seemingly random variations. Like environment

 

[frozenborderline]

Yeah it would be kinda nice to base invasive surgery on proper diagnosis. Not going to have a non-approved stent shoved into my IJV based on some vague hypothesis.

I've spent awhile reading literature from bolognese and other docs and I do think some of the measurements are legit and otc is a real phenomenon but It requires lots of work up and i think bolognese is more thorough about this.

 

[EnigmaCo]

Wow. I've heard of people only improving a moderate amount but these two cases are the first I've heard of people not improving at all. I think they need to be publicized more.

Have you two filled out @Hip s survey?

What were the details of your case? What were your measurements, what surgeon diagnosed you, did you have invasive traction before surgery, did you benefit from reaction or wearing a collar? How long ago did you have the surgery? Did you have mcas beforehand ?

I had surgery on the 4th of November with dr. Gilete.
No the collar didn't give me relief and did not have traction.

And yup, heavy MCAS here....

 

[frozenborderline]

I had surgery on the 4th of November with dr. Gilete.
No the collar didn't give me relief and did not have traction.

And yup, heavy MCAS here....

Have you tried mold avoidance?

Did he diagnose you just based on symptoms ?

What was your Clivo axial angle

 

[EnigmaCo]

Have you tried mold avoidance?

Did he diagnose you just based on symptoms ?

What was your Clivo axial angle

No, based on sitting MRI.

I am not home and I don't have the energy now to look into it. Will inform asap....

 

[Julia_S]

Hi @Silencio! I took part in the fb poll already in which is asked about pem and pots improvements. I have improvements in pem, pots, also significant improvements in brain fog but the only symptoms that seem to be gone for good is my apnea and the inability to be upright for more than a few minutes. Tinnitus for instance did not improve at all. My surgery is less than a year ago so I am still not 100% sure if I can already talk about a final outcome. That’s also why I did not fill out the surgery on here @Hip but sure will do In July

 

[GloriaDG]

I dont think it invalidates me/cfs patients to attribute ones own symptoms to placebo. It's not saying ME is psychological. Placebos are more complex than just psychological and they induce objective changes in patients with cancer and other diseases.

I think "random " variation might be more likely.

I put random in quotes bc there are often overlooked, ubiquitous factors in this disease that we havent nailed down causing the seemingly random variations. Like environment

It's more about the process of blaming the mind whenever something happens and we can't immediately think of a logical and known cause. It's an approach that has never led to any meaningful scientific discovery. Rather than thinking immediately about placebo, we should be asking ourselves "what did cause such a rapid worsening of symptoms after a year of improvement?". Considering that, as I said, many patients experience other structural issues after CCI surgery, I find this more likely than placebo, personally.

Correct. I obviously never said anything like that about Jeff or Jens case. Only speaking for myself here. I also would never compare my case to theirs. And indeed I was diagnosed based on much looser criteria.

I really hope that the rest of the world will interpret it this way and won't start questioning Jen's, Jeff's and others' improvement. And I'm sure that those patients diagnosed by Gilete by the same loose criteria will find your experience extremely valuable.

Yeah it would be kinda nice to base invasive surgery on proper diagnosis. Not going to have a non-approved stent shoved into my IJV based on some vague hypothesis.

I wouldn't too, I think it makes total sense not wanting too. But the field of IJVS is much more complicated than putting a stent in the vein, and it's not even that vague. There are many ways that a jugular vein can be compressed, both by external (such as bone structure or muscle) or internal factors (intraluminal anomalies). Here in Italy, Chronic Cerebrospinal Venous Insufficiency aka CCSVI is officially a diagnoses and you could get PTA angioplasty with the public health system with specific doctors. Italian CCSVI specialists don't even use stents like other American doctors do. As you say, they're not approved for the JV. However, the treatment ultimately depends on the type of compression you have and the options available at present. Not wanting to go ahead with testing is a valid decision, but we desperately need research to understand the implications of these diagnoses on ME patients.

 

[EnigmaCo]

Hi @Silencio! I took part in the fb poll already in which is asked about pem and pots improvements. I have improvements in pem, pots, also significant improvements in brain fog but the only symptoms that seem to be gone for good is my apnea and the inability to be upright for more than a few minutes. Tinnitus for instance did not improve at all. My surgery is less than a year ago so I am still not 100% sure if I can already talk about a final outcome. That’s also why I did not fill out the surgery on here @Hip but sure will do In July

Therefore I am waiting too. I hope it's too early to say, but one thing is for sure; medicine is NOT absolute. The ME group is not homogene and therefore it's so difficult to understand and I think why we still don't know what's causing it. We still don't know whether this is the cause or a correlation...

It also depends on a lot of other things (environment help, intensity of disease, years of disease and so on)

I think we should stay objective at all time and acknowledge that ME is still in the phase of hypothesis...

 

[Grigor]

Dear @mattie, so sorry to hear this! Thank you for your reporting! Stay strong!

 

[Wayne]

Rather than thinking immediately about placebo, we should be asking ourselves "what did cause such a rapid worsening of symptoms after a year of improvement?". Considering that, as I said, many patients experience other structural issues after CCI surgery, I find this more likely than placebo, personally.

@GloriaDG -- Thanks for your posts. I just want to mention that I'm in agreement with you, that other structural issues are far more likely to be the cause of some "apparent" CCI surgery "failures", which would for the most part negate the placebo question.

I think it's worth mentioning the phenomonen that many with ME/CFS experience. Something comes along (such as a supplement), we incorporate it into our regimen(s), and get almost immediate positive results. These results can last anywhere from a day or two, to several weeks/months. But then it not longer supports us like it did in the beginning, and we're back to square one.

Meaning (for me), that some core factor(s) influencing our ME/CFS severity are still in play. We may have addressed a particular factor for our benefit on a temporary basis, but it's still doesn't prevent us from having to "go back to the drawing board".

@mattie, @EnigmaCo -- I would encourage you to not get overly discouraged. It seems likely to me that surgery in combination with a number of other modalities can still bring substantial improvements. I believe most of my core ME/CFS stems from structural issues, especially the neck area. And I'm continually assessing different things that might help, from PRP therapy, to ozone injections, various supplements, even fasting.

I read a book many years ago that was written by a chiropractor back in the 1950's. He routinely put his patients on fairly lengthy fasts (7-21 days), and took x-rays of his patients before and after the fasts. It was astounding to see how severely deformed spines (scoliosis) straightened out dramatically during these fasts.

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.

So it's a continuing challenge. And I'm always keeping my eyes open for anything that might possibly help. I've done a quite a bit of Egoscue "e-cises", and plan to do more of them in the future. His philosophy is that if you're having problems in one joint (or area), it's quite possible it's originating from 2-3 joints away from the problem we're focused on at the time. -- I was amazed one day while getting some physical therapy on my knee, that I all of a sudden felt a flush of ciruculation flow into the area, and my tinnitus actually softened by 10%+ for a few days.