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

[Sushi]

I'm glad to hear someone else has experimented with home techniques to stretch out the vertebrae.

One of my chiropractors recommended a device like this one. I can't report much on it as I loaned it to someone who urgently needed it and never got it back:

 

[Starsister]

@Sushi. Thanks! That does look like it would feel wonderful. My chiro has something similar to use in the office, that you pump up, but it doesn't have all those layers. And he charges a lot extra to use it so it's been a long time. I bought one of those airplane neck pillows thinking it could take some weight off my head when reading or watching tv but it's not thick enough I guess..not quite the effect I was going for. I'll see if I can find one of these. He does have a decompression table that can focus on cervical or lumbar. Hasn't helped the lumbar but sometimes I notice a big improvement with the cervical stretch. But new staff don't seem trained on it so not trusted them to strap me into it again! I read Jeff on other thread and saw the EDS connection too, which fits for me..or some level of hypermobility. I'm sorry your neck contraption never came back to you after you were so generous.

 

[Sushi]

I'll see if I can find one of these.

There are lots of them available on Google and they are not expensive. I'm glad to be reminded of them and maybe I'll buy a new one. I also have EDS.

 

[Hip]

There are lots of them available on Google and they are not expensive. I'm glad to be reminded of them and maybe I'll buy a new one.

Very interesting, Sushi, I did not realize such neck stretching devices existed. They are lot more refined and comfortable-looking than that the primitive method I used to try to stretch my neck (which involved an ironing board!). And very cheap too. I am going to buy one.

 

[Wayne]

I am going to buy one.

I'm going to be making a visit to a physical therapist soon, and anticipate I'll be getting regular pt therapy involving neck stretching, and/or getting a prescription for one of these stretching devices. I'm realizing the tinnitus I now find myself dealing with is likely being heavily influenced by some of my neck and TMJ dysfunction. And I've long suspected much of my ME/CFS is also stemming from my neck.

Interestingly, I'm hoping the "urgency" I'm feeling to get some kind of relief from the tinnitus will end up giving me improvements in my overall health. The cold showers I've been taking to stimulate my vagus nerve (and hopefully reduce the tinnitus) seems to have invigorated my body to the point of being a bit more physically functional. Extra nutritional yeast (B vitamins) also seems to be helping.​

 

[IThinkImTurningJapanese]

The difference though is that the BioFlex I believe employs two wavelengths, 660 nm (red light) and 840 nm (infrared light), whereas I only used one wavelength of 830 nm.

Found one, Lapia Compact Light Therapy. ６６０nm/８５０nm

¥13,800 which is £92, free shipping. Gadgets like this are very popular here. I'm gonna ask my Doctor about it, maybe I can try one for free. Thanks.

 

[tornerose]

Hi! I’ve been following this thread from the beginning, though only as a reader. I signed up to PR just now to be able to post that thanks to the input in these posts, I am probably a big step closer to knowing what my ME is about

After learning about cervical instability and chiari through this thread, I decided to get an opinion from Dr Gilete to rule out these issues. However, I’ve only had supine MRI scans, as upright MRI is not available in my country. (To get an upright MRI scan I would have to travel abroad, and I really didn’t think it would be worth the effort and price as I thought it was unlikely to find anything wrong.) So I emailed the supine MRI scans to dr Gilete’s office.

He reviewed the scans and - surprisingly to me - found I probably have both craniocervical and atlantoaxial instability (the report said “Your images and symptoms highly suggest the presence of CCI and AAI.”) So even in a supine position the measurements were abnormal. I will although need to do an upright MRI scan to get an idea of how extensive the instability is and what my treatment options are. Gilete told me to start wearing a hard neck collar to provide some support and protect my neck from further damage in the meantime.

At this point I’m a bit confused by the findings and I don’t know if, or to what extent, CCI and AAI can explain my ME (including POTS and MCAS), but dr Gilete seems to think so. I’ve had several MRI scans since I got sick 20 months ago (sudden onset of ME after viral infection), and they were all reported as normal by the radiologists. So It’s highly unlikely that I would have figured this out without reading this thread and getting an expert opinion. So thanks Jeff and co! (I don’t know how to tag...)

 

[Wayne]

So thanks Jeff and co! (I don’t know how to tag...)

Hi @tornerose,

Welcome to the PR forum, and thanks for your informative post. It appears there's a number of PR members watching this topic closely, and I'm sure all of us are as thankful as you for @jeff_w's contributions. (using the @ symbol just before a user's name is how you tag them). -- I'll look forward to continuing updates on your most interesting developments.​

 

[jeff_w]

That's fascinating, jeff_w, that brainstem compression could cause all the symptoms of ME/CFS, including PEM and severe POTS.

Are you now free of all ME/CFS symptoms after surgically addressing the craniocervical instability that caused your brain stem compression?

Yes. I had severe POTS since 2014, and that is now completely gone. I also had PEM since 2011, and that is now completely gone. Brain fog is gone, too, along with light sensitivity and the many other symptoms.

So a while ago I did some experiments where I applied a substantial force to pull my whole skull upwards from my spine for around 5 or 10 minutes, in order to stretch and elongate my neck (basically I used some household furniture to wedge my head in place, and then used some of my bodyweight as a downward force, sort of hanging my body under my skull).

Your experiment is fascinating for many reasons. Neurosurgeons who specialize in craniocervical instability, which was the cause of my ME/CFS, do exactly what you did: A Traction Test.

They grip the skull and apply traction to see if this eliminates symptoms of brain stem compression. They measure how many pounds of traction are needed to eliminate your symptoms.

During this traction test, the neurosurgeon will ask if your symptoms are being relieved (subjectively), and they also look at objective measures - specifically: Heart rate/POTS & cervical angles.

After this neck stretching exercise, I noticed some mild improvements to my ME/CFS symptoms, improvements which would last a day or two.

Your positive response strongly suggests brain stem compression! Have you ever had an upright flexion-extension MRI sent to a specialist neurosurgeon? If not, I'd strongly recommend this. You could be onto something here.

In my case: It took 30 pounds of sustained traction to eliminate my POTS and PEM and overall ME/CFS symptoms.

The "cervical traction pillows" weren't enough for me. I needed a halo, screwed into my skull, followed by neurosurgery. If you have severe craniocervical instability, you will need neurosurgery to permanently solve the problem.

I wonder if your experience throws any light on the nature of regular ME/CFS? Could some sort of brainstem compression, or perhaps brainstem swelling due to inflammation, be found in regular ME/CFS, causing or contributing to the symptoms?

I actually had "regular ME/CFS" in every sense of the illness. I met every national and international criteria. I also developed symptoms after what seemed to be a virus(!). I was a true textbook case.

My thinking is this: My autonomic nervous system was disrupted due to brain stem compression. The autonomic nervous system helps control the immune system's functioning. And so, structural brain stem compression can disrupt the immune system, leading to immune abnormalities.

In terms of lab work immune system abnormalities, from 2014 onward I had testing that showed:

• Positive chronic EBV IgM
• Reduced Natural Killer Cell Function

The above markers are classic ME/CFS findings, according to Dr. Kaufman -- the ME/CFS specialist that I was seeing.

However.

Recent research by Dr. Ron Davis is not supporting the "viral theory" of ME/CFS. He's finding no differences between people with ME/CFS and healthy controls in terms of viral markers.

If you look at the ME/CFS brain autopsies, they found enterovirus infection in the brain stem. Dr John Chia says enterovirus likely enters the brain by traveling along the vagus nerve, which runs from gut to the brain; and this nerve happens to enter the brain at the brain stem (the vagus connects to the medulla oblongata of the brain stem).

Or, it could be that structural brain stem compression leaves the brain stem vulnerable to viral infiltration. Hence, the autopsy findings.

We would need to see these autopsy findings tested on a much larger scale, in order to know how universal these findings are.

It could also be that the brain stem compression disrupts the autonomic nervous system so that the immune system can't clear viral and/or bacterial infections normally.

 

[jeff_w]

Hi! I’ve been following this thread from the beginning, though only as a reader. I signed up to PR just now to be able to post that thanks to the input in these posts, I am probably a big step closer to knowing what my ME is about

Glad to hear it!

After learning about cervical instability and chiari through this thread, I decided to get an opinion from Dr Gilete to rule out these issues.

He's one of the three neurosurgeons in the world who deal with these issues.

He reviewed the scans and - surprisingly to me - found I probably have both craniocervical and atlantoaxial instability (the report said “Your images and symptoms highly suggest the presence of CCI and AAI.”) So even in a supine position the measurements were abnormal.

If it's severe enough, it can show on supine MRIs. I never had Dr. Bolognese view my supine MRIs, because I had already done the upright ones.

At this point I’m a bit confused by the findings and I don’t know if, or to what extent, CCI and AAI can explain my ME (including POTS and MCAS), but dr Gilete seems to think so.

In my own case, my POTS and MCAS completely went away after surgery for CCI and AAI. The source was neurological.

So that people reading this know what these acronyms mean:

"CCI" refers to "craniocervical instability" between the skull and the first vertebra (C0-C1). (C0 is the skull)

"AAI" refers to "atlantoaxial instability" between the first and second cervical vertebrae (C1-C2).

My fusion surgery was skull through my second cervical vertebra (C0-C2). So it solved both CCI and AAI.

I’ve had several MRI scans since I got sick 20 months ago (sudden onset of ME after viral infection), and they were all reported as normal by the radiologists. So It’s highly unlikely that I would have figured this out without reading this thread and getting an expert opinion. So thanks Jeff and co! (I don’t know how to tag...)

I'm so glad to hear this! Keep us posted.

 

[stetson28]

I have personally witnessed two separate individuals spontaneously recover from both anecdotal and clinical diagnosis of CFS from Chiari shunting surgery. The interesting part to me was learning from her physician how common mild Chiari is and in many cases are not even detectable in standard horizontal CT or mri scans. This was the case for one of my friends who dismissed Chiari for 3 years until her voice begin to fluctuate. After myasthenia gravis and several muscular dystrophys were ruled out a specific angular MRI was used to look at brain stem compression. This is also a cautionary Tale to remind folks to be careful when they go to a chiropractor. Hurking and jerking on an undiagnosed Chiari malformation is highly problematic verified by my old chiropractor who was sued a few times.

 

[jeff_w]

@jeff_w I'm curious who you went to to get the approval for the MRI of your cervical...and then who interpreted the results to identify the problem?

I asked Dr. Kaufman, who is my internist and a CFS/ME doctor, to write an order for this type of MRI. And he wrote it.

Then I sent my upright flexion-extension MRI images to Dr. Bolognese (New York), who specializes in craniocervical instability (CCI) and Chiari.

The two other specialists in the world, besides Bolognese, who specialize in this are Dr. Henderson (Maryland) and Dr. Gilete (Barcelona, Spain).

I suspect a lot of my symptoms are spine related but am not getting any creative solutions from drs I've seen.

Just as most doctors aren’t trained to recognize ME/CFS or POTS, the vast majority of doctors aren’t trained to recognize CCI or Chiari. So you really need a neurosurgeon who is a specialist.

Maybe my ME ( or whatever we are calling MEat present) has contubuted to hypermobility and spinal problems over the last 35 years. I had a 4 X-ray of my complete spine done last year that showed severe scoliosis.

Hypermobility is the biggest risk factor for CCI, Chiari, and scoliosis. They very often exist together in clusters, due to underlying Ehlers-Danlos Syndrome.

I'm really happy for you that you found a source of your issues and are recovering!

Thank you so much!

 

[pamojja]

@@jeff_w Do you know of anyone that had the same issues that did stem cell therapy instead?

I don't see how stem cells would help with Chiari. The only way I could see them helping with CCI is if the stem cells would regenerate and tighten the failing neck ligaments. But that seems like a long shot. I don't think it would happen. I definitely wouldn't do a stem cell treatment for these issues unless you find research to support it.

Not as advise at all, but as a strange anecdote, the moment I heart fusion it caught my attention. About 18 years ago I and the radiologist in Gaya, India, after seeing the x-ray thought I had a herniated disc at my lower back. I remained immobile due to severe back-pain altogether 8 months, after which it resolved by itself (wasn't insured at the time, and had no means to pursue conventional therapy). Only pain-medication which worked somewhat was very high-dose ibuprofen.

6 years later in need of an attest to certify that I can't do strenuous bodily work anymore, it was found that it hasn't been a herniated disk at all, but a spinal cord infection (Spondylodiscitis - allegedly usually needing Antibiotic IVs to prevent worst), which according to the old x-ray further up the spine was eating away from 2 vertebraes overseen. By then these 2 vertebraes had calcified again and fussed into one, without external stem cell therapy. But a lot of ignorance and good faith.

 

[sb4]

I did a little googling and found a few websites, mainly chiropracters, such as this (https://cureformecfs.wordpress.com/), that claim CFS/ME is caused by problems in the cervical spine around the atlas. Whilst I don't think this is the case for everyone, there is meat on this bone.

Even if most of us don't have spine problems. It gives a big clue to how this all works. I would not have expected spinal compression would produce identical symptoms to ME/CFS/POTS right down to low NK cells. Could all our problems be autonomic/ nervous system based?

 

[femtosecond99]

I would be very careful with this. There are a number of surgeons doing this, such as Dr Bolognese:

http://www.nydailynews.com/new-york...n-slapped-malpractice-suits-article-1.2850568

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

There also doesn't seem to be much evidence that it can cause CFS symptoms. I'd like to see some sort of a clinical trial, rather than relying on anecdotal reports. Without a trial, it's impossible to know what caused someone's symptoms to resolve.

 

[Gingergrrl]

I want to stay out of this discussion but it is challenging for me b/c I have known Jeff for 4+ years and visited him in the hospital (prior to his surgery). Everything he is sharing re: his own case is the truth and it is hard for me to see people questioning his integrity.

He is NOT saying that everyone's illness is due to CCI like his was vs. for those people who match his symptoms, he is saying that it could be worth it to have a standing MRI done to rule it in or out. He could go about his life and never post here again but is sharing his experiences in case they help someone else down the line, as I am doing re: my own experiences with autoimmunity, high dose IVIG and Rituximab (which has currently put me in remission but I know that it will only be relevant to a very small percentage of people). But if my experience helps even one other person in the future, I will keep replying to all of the PM's I receive and keep sharing my experiences.

Jeff, please let me know if I am speaking out of turn (which is the last thing I would want to do)!

 

[femtosecond99]

I want to stay out of this discussion but it is challenging for me b/c I have known Jeff for 4+ years and visited him in the hospital (prior to his surgery). Everything he is sharing re: his own case is the truth and it is hard for me to see people questioning his integrity.

Not sure if you were referring to my post, but let me clarify that I definitely was NOT questioning his integrity or the fact that he has recovered.

 

[Gingergrrl]

Not sure if you were referring to my post, but let me clarify that I definitely was NOT questioning his integrity or the fact that he has recovered.

Thanks for clarifying and I agree that I wish there were clinical trials for all of this. But since there isn't, sometimes anecdotal reports can be very beneficial information (to be discussed further with your own doctors of course).

 

[unicorn7]

It's really interesting to hear your progress Jeff_w!

My hypothesis has always been that there might be two or three different "new" diseases that are ME/CFS, but that there is also a certain percentage of people that is just misdiagnosed.

Do you have EDS? Because it seems that especially people with EDS are prone to develop CCI. When I read the symptoms of CCI, it could definitely be confused with me/cfs.

I read the case study on three people with spinal stenosis and me/cfs symptoms that were resolved with surgery. I must admit I'm pretty interested. Although I have gotten a bit better with gut and immunologic-related therapies, I have always wondered about my neck. My GP has always suspected neck-problems with me as well.

I have had a lot of neck trauma in the past (sport injuries) and my symptoms went from very mild to moderate after another accident, so for myself I wouldn't rule it out altogether that there might be something going on in my cervical spine. I don't have POTS, but always feel good when I lay down, mostly because my neck gets some rest. That has been like that since the beginning. That my neck doesn't seem able to carry my head.

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.

 

[femtosecond99]

Thanks for clarifying and I agree that I wish there were clinical trials for all of this. But since there isn't, sometimes anecdotal reports can be very beneficial information (to be discussed further with your own doctors of course).

Yes, as long as you understand the problems with anecdotal reports. For anyone who doesn't see the problems, I'd strongly recommend investigating the Liberation Therapy debacle.