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

[Gingergrrl]

Yes, as long as you understand the problems with anecdotal reports.

I do understand the problem with anecdotal reports if you simply read them and assume that they apply to you and try random things that could be dangerous. But if you read them and they resonate for you, they can be a starting point for further research and discussion with your own doctor(s).

 

[femtosecond99]

I do understand the problem with anecdotal reports if you simply read them and assume that they apply to you and try random things that could be dangerous. But if you read them and they resonate for you, they can be a starting point for further research and discussion with your own doctor(s).

The problem with this is that there isn't really much (if any) research, and it has a lot more potential for complications than liberation therapy.

 

[Gingergrrl]

The problem with this is that there isn't really much (if any) research, and it has a lot more potential for complications than liberation therapy.

I have no idea what "liberation therapy" is (and it is not something that I was referring to in any post). I was speaking in general and it is because of this board that I learned of my doctor (back in 2014) and later of various treatments that have helped in my case. I would never have found any of this on my own.

 

[tornerose]

@jeff_w (thanks for teaching me how to tag @Wayne )

It’s amazing that your POTS and MCAS have resolved. Your story gives me so much hope, although the thought of surgery scares me...

I’ve read that Bolognese, Henderson and Gilete require that one tries conservative treatments (like a PT program) before surgery is an option. I find it difficult to see how that could be possible to undergo with moderate or severe ME... Did you go through that?

 

[jeff_w]

There also doesn't seem to be much evidence that it can cause CFS symptoms...

Yes, as long as you understand the problems with anecdotal reports...

The problem with this is that there isn't really much (if any) research

I actually posted three peer-reviewed academic research articles in this thread, weeks ago, for anyone interested.

There is a growing body of peer-reviewed academic research supporting that the cervical spine is involved in POTS, exhaustion, autonomic nervous system malfunction, etc -- the symptoms of ME/CFS.

There's also brand new research, from 2018, describing people with ME/CFS recovering after cervical spine surgery.

I've posted three peer-reviewed academic journal articles below.

Here's an acedemic journal article from 2018 that describes people ME/CFS recovering after cervical spine surgery:

Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis

The following articles go into detail about what symptoms cervical spinal surgery can relieve:

Peer-reviewed academic research from 2017: Here

Peer-reviewed academic research from 2018: Here

 

[femtosecond99]

I have no idea what "liberation therapy" is

I'd suggest googling it, as it will help explain why I believe chiari treatments are problematic.

 

[Sushi]

Moderator note: This thread is not to be used to continue the contentious discussion the occurred in the closed thread Recovery. Anyone who tries to continue the discussion here will be banned from the thread. This thread is strictly about Chiari and related spinal compression issues and treatments.

 

[femtosecond99]

Peer-reviewed academic research from 2017: Here

1. The Complex Chiari malformation, though well described in the literature (see section on craniocervical instability), is not universally recognized among those who perform Chiari surgery. Prospective studies in EDS patients with Complex Chiari malformation are needed to compare outcomes following decompression alone versus those undergoing decompression with fusion/stabilization.

It sounds from this as if there are still a lot of unknowns.

Peer-reviewed academic research from 2018: Here

This is an uncontrolled study.

Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis

This is another uncontrolled study.

I actually posted three peer-reviewed academic research articles in this thread, weeks ago, for those who were interested.

There is a growing body of peer-reviewed academic research supporting that the cervical spine is involved in POTS, exhaustion, autonomic nervous system malfunction, etc -- the symptoms of ME/CFS.

I had a look through all 9 pages of this thread, but didn't see it. I just saw you mention it was "well established". I did a quick search and didn't find anything, so perhaps you could help.

 

[jeff_w]

I would be very careful with this. There are a number of surgeons doing this...

That is false. Why would you make a false, frightening, and damaging claim like this?

There are three neurosurgeons who are specialists in this surgery:

1. Dr. Fraser Henderson in Maryland. He is a neurosurgeon who has been in practice for decades. He authors peer-reviewed academic journal articles, presents at conferences around the world, and has pioneered new surgical techniques.

2. Dr. Gilete in Barcelona, Spain. He is internationally renown. He has people from all over the world go to him. Here's his website: Dr. Gilete

3. Dr. Paolo Bolognese in New York. He has broken ground in this field, and his fusion technique is the most advanced. I did thousands of hours of research and chose Dr. Bolognese, out of these three.

 

[jeff_w]

It's really interesting to hear your progress Jeff_w!

Thanks!

Since reading your story, I have been reading a lot of research about neuro-immune interaction and it definitely could be possible to have immunologic problems because of neurological trauma.

Yes! It's fascinating how our neurological system is intertwined with our immune system. I had the classic recurring positive EBV IgM, low NK cell function, etc.

Immune abnormalities can impact the neurological system, and vice-versa.

 

[jeff_w]

@jeff_w (thanks for teaching me how to tag @Wayne )

It’s amazing that your POTS and MCAS have resolved. Your story gives me so much hope

Thanks! I'm glad to hear this.

although the thought of surgery scares me...

Yes. In my case, the thought of not having surgery was even more alarming.

I’ve read that Bolognese, Henderson and Gilete require that one tries conservative treatments (like a PT program) before surgery is an option.

They do, because surgery is a big step, and these are specialist neurosurgeons who try to resolve problems through conservative measures, first. But if your brain stem compression is severe, they will recommend surgery without trying PT first.

In my own case, my measurements met the "surgical criteria." My brain stem compression was severe enough that PT wouldn't have fixed the problem.

The criteria for surgery is:
1. A clivo-axial angle of less than 135 degrees.
2. A Grabb Oakes measurement of 9mm or greater.

I find it difficult to see how that could be possible to undergo with moderate or severe ME... Did you go through that?

Since my measurements were severe enough to require surgery, no neurosurgeon would have recommended PT. It could be that people with moderate to severe ME have such severe compression, like I did, that their measurements are "surgical."

 

[femtosecond99]

Uh... No. That is false.

There are three neurosurgeons who are specialists in this surgery:

But as I pointed out, one of them has had 20 malpractice lawsuits.

 

[Strawberry]

The criteria for surgery is:
1. A clivo-axial angle of less than 135 degrees.
2. A Grabb Oakes measurement of 9 or greater.

Could this be similar or same as "military neck?"

Pics at the top of this website show exrays of military neck...
https://www.healthline.com/health/military-neck

 

[jeff_w]

Could this be similar or same as "military neck?"

Pics at the top of this website show exrays of military neck...
https://www.healthline.com/health/military-neck

"Military neck" is a loss of normal the neck curve (cervical lordosis). It doesn’t include brain stem compression and other issues that I had.

I had brain stem compression, abnormal clivo-axial angle, Grabb Oakes Measurement, etc.

 

[Strawberry]

Ok. Thank you! I just saw "angle" and thought about my lack of curve that may have something to do with angle. All of this is like a foreign language to me. And thank you for the earlier statement on stem cells. I'm still not certain where I fall in line with this, but I will never know without testing.

 

[jeff_w]

Accurate information is so important. It advances our understanding of solutions for relieving illness and suffering.

Unfortunately, some false and alarming claims were posted to this thread today. I’ll address them here.

@femtosecond99 -

You made many posts to this thread today. At least four of your posts contained false information. These false claims were frankly alarming and could frighten people. I will address each of your posts and false claims below:

Your 11:45am post contained the following misinformation:

First false claim:

There are a number of dodgy surgeons doing this, such as Dr Bolognese

This is false. There are three specialist neurosurgeons in the world who deal with Chiari and CCI. Out of the three, Dr. Henderson and Dr. Gilete are without controversy and have been successful neurosurgeons for decades.

The only one of these surgeons who is considered at all controversial is Dr. Bolognese. Dr. Bolognese has been an innovator and practicing neurosurgeon for decades. I did literally thousands of hours of research into choosing a neurosurgeon and spoke with hundreds of Chiari/CCI patients. After my in-depth research, I had no fears about Dr. Bolognese and chose him as my neurosurgeon. In fact, his innovation is what opened him up to so much criticism, and yet, that innovation is why I ultimately chose him.

I would trust any of these three neurosurgeons with my life.

Second false claim:

This is very dangerous surgery, and a lot of things can go wrong.

This is false. There is no evidence that these surgeries are any more dangerous than other surgeries in the same area. I'm really curious as to why you posted this unsubstantiated claim.

Your 1:07pm post contained the following misinformation:

Third false claim:

For anyone who doesn't see the problems, I'd strongly recommend investigating the Liberation Therapy debacle.

This is a false claim. It's a non-sequitor and does not relate to Chiari or CCI surgery in any way.

Liberation Therapy was a surgery performed on Multiple Sclerosis patients. It was a surgical procedure to open up narrow veins in MS patients. As such, Liberation Therapy has zero relationship to the population being discussed in this thread: Chiari and CCI patients. Furthermore, the surgeries performed on Chiari and CCI patients have nothing to do with opening up veins, which was the whole technique of Liberation Therapy.

Different patient populations were involved, and different body parts were operated on -- all for completely unrelated reasons and conditions.

Why did you post this completely unrelated -- and very misleading -- information?

Your 1:16pm post contained the following misinformation:

Fourth false claim:

The problem with this is that there isn't really much (if any) research

False. There are peer-reviewed academic journal articles on these Chiari and CCI surgeries and their relation to POTS, exhaustion, and success rates. I posted three research articles to this thread on May 12th as well as on earlier dates.

Why did you post this false claim? This false claim is especially troubling in light of the research that had already been posted to this very thread. I wonder if you haven't been reading very carefully, or if you decided to knowingly post false and scary-sounding information.

Your 2:22pm post contained the following misinformation:

Fifth false claim:

@Gingergrrl asked you what "Liberation Therapy" was. You responded with this:

I'd suggest googling it, as it will help explain why I believe chiari treatments are problematic.

As stated in my response above to your Third False Claim, there is zero connection between Liberation Therapy and Chiari/CCI. It is completely false and misleading to assert that the problems with Liberation Therapy would be relevant to the topic of this thread.

Again: Different patient populations were involved, and different body parts were operated on -- all for completely unrelated reasons and conditions. Why did you again assert this falsehood?

In Summary:

I am concerned by your decision to post false claims throughout this thread. I am especially concerned that your false claims appear to be scare-tactics, whether intentional or not.

I do not know your motivation for doing this, but it doesn't really matter.

If you continue to post these false, scary-sounding, and damaging claims, then I will continue to refute them.

But I would encourage you to stop doing so, because it is a waste of my time, your time, and the time of others who are following this thread.

 

[Sushi]

one of them has had 20 malpractice lawsuits.

True, that has been reported online--however none of those lawsuits resulted in censure by the medical board. Doctors (and I'd think especially neurosurgeons) are often sued.

 

[femtosecond99]

True, that has been reported online--however none of those lawsuits resulted in censure by the medical board. Doctors (and I'd think especially neurosurgeons) are often sued.

If people want to go ahead with the surgery, that's fine, I'm just suggesting that people understand the risks.

Overall, it seems to be very similar to Liberation Therapy for MS as discussed above, but more risky. LT had lots of anecdotal glowing reviews of people getting their health back (and they weren't all lying), and also lots of positive uncontrolled trials. So it had much more evidence than this therapy, but in the end we discovered that it actually has zero effectiveness after a number of controlled trials were done. There were always some question marks over the theory of LT, and there are similar question marks over the theory of Chiari.

 

[jeff_w]

If people want to go ahead with the surgery, that's fine, I'm just suggesting that people understand the risks.

As for risk assessment, a person also has to consider the risks of not addressing Chiari or CCI. In my case, my quality of life before surgery was close to non-existent. And in the Chiari and CCI forums I belong to, there are people who are disabled by these fixable conditions, and some who die because they can't afford surgeries.

One girl died of brain stem compression from CCI, which caused her to stop breathing in her sleep. And a little boy died of intercranial problems as a result of his Chiari. Those are just two examples of people who have died. There have been others that killed themselves due to suffering with a low quality of life.

And then, there are many others who spent many years or decades with a very low quality of life, prior to their surgeries. I'm fortunate that I only had four years of being extremely ill.

Another problem with what you're posting, @femtosecond99 , is that you paint a false picture of the risks. You say these surgeries are extremely dangerous, but this isn't true. These surgeries pose no greater risk than other comparable surgeries. And there are also risks involved in not having surgery.

I find it strange that you have consistently posted these false and misleading claims, even when confronted with reality. Your conduct makes me doubt your credibility.

This forum is only as useful as the information in it.

Overall, it seems to be very similar to Liberation Therapy for MS as discussed above, but more risky.

That's a strange thing to bring up here, because Liberation Therapy is completely unrelated to the surgery for Chiari or CCI.

Liberation Therapy involved opening veins on patients with multiple sclerosis. Chiari and CCI surgeries have nothing to do with opening veins, and nothing to do with multiple sclerosis.

So I have to ask you again: Why are you continually posting misleading information? I look forward to your answer.

I've asked you this same question six times now. And so far, you've dodged the question each time.

 

[jeff_w]

It's really interesting to hear your progress Jeff_w!

Do you have EDS? Because it seems that especially people with EDS are prone to develop CCI.

Yes, people with EDS are prone to POTS, MCAS, and CCI.

In my case, fixing the CCI took away both my POTS and my MCAS. So in my case, the cause of both was neurological.

I do have EDS but never knew it until I developed obvious CCI. I was never especially “bendy,” which is the EDS stereotype.