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

[StarChild56]

Hi @StarChild56, I can't seem to get this video to play. Is there some "little" trick my CFS brain can't seem to figure out, or do they want payment of some kind to watch it? -- Thanks!

I just tried this link and it worked for me. I am on an android phone and using Chrome...hope it works for you it is a fantastic video. Also you could search @Diwi9 and Dr. Healy here and take you to her post with the link which is where I got mine from maybe it would work.

I just clicked on the Vimeo on the "Sorry" message...

 

[Wayne]

Thanks @StarChild56, I tried the link in my Foxfire browser and it worked.

Just ran across the following at THIS SITE (which seems to tie in with our discussion). A number of the symptoms listed in the box are very similar to ME/CFS symptoms.
...........................................................

Barré-Lieou syndrome was discovered by and named after Jean Alexandre Barre, M.D., a French neurologist, and Yong-Choen Lieou, a Chinese physician. Each discovered the syndrome independently and described a very wide range of symptoms thought to be due to a dysfunction of the group of nerves called the posterior cervical sympathetic nervous system, located near the vertebrae in the neck. Therefore, this condition is often better known as cervicocranial syndrome and posterior cervical sympathetic syndrome.

Barré-Liéou and Cervicocranial syndrome are due to cervical vertebral instability, which affects the function of the nerve cell aggregations located in the neck just in front of the vertebrae. Vertebral instability or misalignment occurs because the ligaments that support the neck become weakened or injured. This is what occurs in the commonly known whiplash injury. Not only do neck and headache pain occur with whiplash injury, but also the signs and symptoms of Barré-Lieou syndrome.

See our main page, Prolotherapy for neck pain and cervical instability for more information.

Barré-Liéou syndrome has symptoms related to underlying cervical instability. While classified as a rare disease, Barré-Liéou syndrome is likely underdiagnosed.

Vertebral instability, occurring after neck ligament injury, affects the function of cervical sympathetic ganglia (nerve bundle).

Symptoms include neck pain and neck instability, migraines/headache, vertigo, tinnitus,
dizziness, visual/auditory disturbances, and other symptoms of the head/neck region.

 

[nasim marie jafry]

I was very curious about this, too. @nasim marie jafry was there a specific muscle test (or other tests?) that served as a bio-marker for ME/CFS when you were tested in the 80's in the UK that are no longer performed or recognized today? How did they rule out all of the other diseases on the paper that you posted a few days ago?

Sorry, I find it hard to follow long posts/threads, is one of reasons I rarely post on forums, it challenges me cognitively, as it does many of us. I think we have to understand in 1980s in UK there were some v good ME doctors BEFORE Wessely and co - later, they became the architects of PACE- hijacked the illness late 1980s/early1990s. I am not sure how many of you are familiar with Dr Melvin Ramsay but you can't talk about ME in UK without referencing him. His 1986 book has been reprinted and is still available from ME Association, I recommend it, together with preface by the cons neurologist Behan who dxd me. He and his late wife found mitochondrial abnormalities in muscle tissue...no, this biopsy not a biomarker, but helped him confirm his diagnosis of presumed ME along with my Coxsackie B4 history and abnormal electromyelogram.

There was an outbreak of CBV at this time in west of Scotland. Though ME can occur sporadically, epidemically and endemically. My history of illness fits entirely with the pre-Wessely literature on ME. I did spend the first decade looking for a 'cure' but one cannot spend one's life seeking cures...I have simply had to adjust, like many of us, to life with a poorly understood, abysmally under-researched illness... I took part in several clinical trials in early days, Imunovir, for example, an anti-viral drug. I personally do not need a further diagnosis, just as if I had been diagnosed with MS or lupus, I would not need a further diagnosis. I can post a link to Behan's work later, when I am more organised. Thank you.

 

[Wayne]

I think the chiropractor's last name started with a P.

Turns out, the guy I was thinking of is actually an Osteopath from the U.K. The article below appears to be a good resource for perusing information on what Dr. Perrin was trying to treat, and why. I haven't read it yet, but I'm looking forward to seeing whether there may be any crossover between CCI and what Perrin has observed in his own practice. -- Hey @Cort, you may find this thread interesting if you've haven't already run across it.

Toxic Brains, Frozen Spines and the Perrin Point: Ray Perrin, ME/CFS and Fibromyalgia
by Cort Johnson | Mar 25, 2018 | Homepage | 89 comments
​

EDIT: -- Wow, I just read Cort's article, which I found to be quite interesting. Even though my brain didn't quite feel up to the task, I was able to read/peruse the whole thing. -- I strongly recommend it...

 

[mattie]

Following this threat with great interest.
Many thanks @jeff_w for sharing your story and for taking the time for answering the many questions in this thread!

With now a substantial number of ME&POTS patients tested positive, and only a small number of PWME tested, I feel that I cannot afford not to rule out CCI / AAI.

So I've decided to have the MRI.

The Upright MRI clinics in the UK and Germany seem to be the same organization:
https://www.medserena.com

Contacted them and they do take self-referring patients.
Also contacted Dr. Gilete's clinic in Barcelona; he will review the scans for a reasonable fee.

I am scheduled for an Upright MRI in January.

Will post the outcome in this thread, so we can keep count of the number of positive/negative scan reviews.

 

[brando]

@jeff_w just wondering if there'e any news on the beyond the measurement group accepting members?

 

[frozenborderline]

Quick surgery, how many people have managed to get an upright mri covered by insurance? Especially curious about in the US? Does it matter what the doctor writes in the order ?

 

[bjl218]

And just to be clear, is the standard still an upright MRI in flexion, neutral, and extension or a supine 3T MRI? Is the supine 3T MRI done only in neutral position or also in flexion and extension?

 

[mattie]

Depends on who will review the scans.

Dr. Gilete in Barcelona requested upright MRI,
in these exact words:

Upright flexion, extension and rotation MRI. Scan of the craniocervical junction and cervical spine.

 

[Gingergrrl]

He and his late wife found mitochondrial abnormalities in muscle tissue...no, this biopsy not a biomarker, but helped him confirm his diagnosis of presumed ME along with my Coxsackie B4 history and abnormal electromyelogram.

I apologize that it has taken me so long to get back to this thread! Thank you for explaining that the muscle biopsy was not considered a biomarker (at that time) and I was honestly not sure and do not know the whole history. I have never had a muscle biopsy. I saw Dr. Chia (a one-off consultation, he is not my treating doctor) and he diagnosed me with Coxsackie B4 and Echo virus 11 (from ARUP labs).

Then later in 2016, I had an abnormal electromyelogram (EMG) and nerve conduction test which showed my left phrenic nerve to diaphragm was only working at 57%. In my case, we no longer believe that ME/CFS is my diagnosis but in the US, it is so easy for patients to be given a "CFS" diagnosis by GP's and specialists and told there is no treatment and sent on their way (like I was in 2013 & 2014) when many of these patients may really have another diagnosis altogether, or they may have ME/CFS plus several other co-morbid conditions that could be treated.

I took part in several clinical trials in early days, Imunovir, for example, an anti-viral drug.

I think that is great and I would have done the same thing. I think that is what most of the people in this thread are trying to do, which is to get to the bottom of their diagnosis or diagnoses and what treatments could be the most helpful in their individual cases.

I personally do not need a further diagnosis, just as if I had been diagnosed with MS or lupus, I would not need a further diagnosis.

I think it is great that you have a solid diagnosis and plan. I think that is not always the case for everyone though. One of my best friends was diagnosed with lupus (a very long time ago) but she is currently in remission from treatments (or good fortune?) and her diagnosis is now "mixed connective tissue disorder" b/c her lupus tests are coming back negative which is unbelievable. She wasn't looking for further diagnoses, and she even continues to lead a lupus support group, but her diagnosis, which was rock solid, has now been changed.

With now a substantial number of ME&POTS patients tested positive, and only a small number of PWME tested, I feel that I cannot afford not to rule out CCI / AAI.

I totally agree with this and see no downside to getting tested, especially if you have a long history of chronic neck problems/pain or a new onset acute neck problem (like what happened with Jeff or JenB).

I am going to post about my recent MRI in next post (although I still do not have the results and will add an addendum or a new post when they come in).

 

[Diwi9]

Quick surgery, how many people have managed to get an upright mri covered by insurance? Especially curious about in the US? Does it matter what the doctor writes in the order ?

I had to pay out-of-pocket for mine. It cost $600, which is amazing because when I've had simpler supine MRI's, I had a $200 co-pay. Sometimes facilities charge less for out-of-pocket. Unfortunately, my doctor now wants more imaging and I do not know what exactly...or what I'll need to pay.

 

[Gingergrrl]

@StarChild56 @toyfoof @Mary @jeff_w (apologies to anyone who asked about my MRI that I am forgetting to tag)!

I had the MRI of my cervical spine earlier this week and it was a regular supine MRI on a 3T machine, without contrast dye. The procedure went very smoothly with no issues and the technician was very nice. He said that they could either write up the report immediately (without having my 2010 cervical MRI as a comparison) or they could wait to receive my old medical records and write it up then.

I decided that it was better to wait (since it would hopefully only be about a week at most) and have the radiologist write the report with the 2010 imaging as a comparison. They gave me the image of my MRI on a CD when I left but I have absolutely no idea what it shows! But at least I have it for the future to show my doctor and PT (or other future doctors). It just isn't helpful yet until we have the written report that goes with it.

Today I finally got my medical records from 2010 e-mailed to me (just the written report) and the images on a CD will go to the Imaging Center and then they will mail them to me once they are done. I just read the report from 2010 (when my neck was not nearly as bad as it is now). I actually did the MRI of my brain & spinal cord in 2010 while I was in the hospital following a neurotoxic reaction to Levaquin which had injured my arm. Unfortunately, I no longer had a copy of these records and it took much longer to get them than I expected!

From my limited knowledge, it looks like the MRI of my brain from 2010 was completely normal . The cervical MRI from 2010 said that I had bulging discs at C3-C4, C4-C5, C5-C6, and C6-C7 with "minimal cord flattening" and "mild central narrowing". The worst one, per the report, was C4-C5 (vs. my current PT feels that the worst one is C5-C6 so something must have changed in the last 8 years). The 2010 MRI report doesn't mention C1 whatsoever (unless I am missing it)! It also says "loss of lordosis" in neck but am not completely sure what this means.

In any case, that was all from the report from 2010 and I suspect that this current cervical MRI (8 yrs later) will be much worse. I still do not suspect CCI/AAI (in my case) vs. bulging discs, stenosis, and radiculopathy. If my doctor wants additional images after we get the report, I am happy to do them. I will also show them to my new PT and see what he thinks. I've been working w/a great PT but her last day is tomorrow and she'll be gone before I get the write-up of this MRI. I am hoping this MRI will determine if I should get a home traction machine. Manual cervical traction helps my neck pain but I am not sure if the machine would be too strong or is indicated in my case?

 

[frozenborderline]

I had to pay out-of-pocket for mine. It cost $600, which is amazing because when I've had simpler supine MRI's, I had a $200 co-pay. Sometimes facilities charge less for out-of-pocket. Unfortunately, my doctor now wants more imaging and I do not know what exactly...or what I'll need to pay.

Wow!!! I suppose you’re probably not in the northeast US or I’d ask the specific facility I’ve been fundraising to be prepared to pay this if it’s rejected as I’ve deteriorated so much lately with vertigo and neurological symptoms helped by collar/positional, that this is the only thing I can think of. Assumed upright mri would b a lot more tho. I have enough to cover 600 But was thinking more like 1600 plus

 

[Gingergrrl]

I have enough to cover 600 But was thinking more like 1600 plus

Wow, I had no idea that an upright MRI was so expensive! Can your doctor do a Prior Auth and say that this test is medically necessary? I only had a regular supine MRI and it was covered by insurance without a Prior Auth but that was all my doctor asked for (and it has been eight years since my prior cervical MRI which was also with a totally different insurance company at the time).

Edit: I hope you will be able to get the MRI @debored13

 

[frozenborderline]

Wow, I had no idea that an upright MRI was so expensive! Can your doctor do a Prior Auth and say that this test is medically necessary? I only had a regular supine MRI and it was covered by insurance without a Prior Auth but that was all my doctor asked for (and it has been eight years since my prior cervical MRI which was also with a totally different insurance company at the time).

Edit: I hope you will be able to get the MRI @debored13

Well the insurance hasn’t denied it yet but I’m so sick that I figured I should plan for the worst hope for the best so I don’t have to fight with insurance for months or something while I decline. I’m concerned that a supine mri might not show this issue even tho one of the five neurosurgeons accepts or prefers it. If it was a matter of getting a supine quicker and then getting an urprignt as soon after if the supine doesn’t show this issue , it would be one thing but feel my doctor and parents may not support me as much in that if the supine doesn’t show this issue

So now I wish to push for upright , maybe it’ll go through

 

[Diwi9]

Wow!!! I suppose you’re probably not in the northeast US or I’d ask the specific facility I’ve been fundraising to be prepared to pay this if it’s rejected as I’ve deteriorated so much lately with vertigo and neurological symptoms helped by collar/positional, that this is the only thing I can think of. Assumed upright mri would b a lot more tho. I have enough to cover 600 But was thinking more like 1600 plus

I assumed that out-of-pocket would easily be over $1000, especially considering all the different imaging positions. Call around and find out if costs are negotiable. My insurance would only cover supine imagining. One note, my upright imagining did not have a radiologists review, which was unnecessary because the review was done by Dr. Bolognese through my CFS specialist.

The whole process has confused me and I live in a semi-rural area without access to great medical resources. I wish I could have one diagnosis that was better recognized and standardized. There are other diagnostics I would appreciate having performed (proper POTS evaluation, rheumatology, etc.)...but I just don't have adequate access with referrals and in-network providers with expertise.

 

[Mary]

Hi @Gingergrrl - thanks for all the info, I was wondering how your MRI went. Do post your results when you get them!

The cervical MRI from 2010 said that I had bulging discs at C3-C4, C4-C5, C5-C6, and C6-C7 with "minimal cord flattening" and "mild central narrowing".

do you know the cause of your bulging discs? Is it related to your car accident?

It also says "loss of lordosis" in neck but am not completely sure what this means.

Lordosis refers to the natural curve of the neck, which goes inward. Loss of lordosis is when the neck loses that curve. I have the same thing or possibly even a reversed lordotic curve. This article talks about this issue: https://www.regenexx.com/blog/regen...rmal-cervical-lordosis-can-it-cause-problems/

 

[mattie]

Assumed upright mri would b a lot more tho. I have enough to cover 600 But was thinking more like 1600 plus

It’s 1800 euros in the german clinic I mentioned earlier.

 

[frozenborderline]

I assumed that out-of-pocket would easily be over $1000, especially considering all the different imaging positions. Call around and find out if costs are negotiable. My insurance would only cover supine imagining. One note, my upright imagining did not have a radiologists review, which was unnecessary because the review was done by Dr. Bolognese through my CFS specialist.

The whole process has confused me and I live in a semi-rural area without access to great medical resources. I wish I could have one diagnosis that was better recognized and standardized. There are other diagnostics I would appreciate having performed (proper POTS evaluation, rheumatology, etc.)...but I just don't have adequate access with referrals and in-network providers with expertise.

I live in a very rural area and now I am thinking im. possibly too sick to travel for an upright mri. Closest supine mri is about 45 minute drive , closest upright mri is about 3 hours, second closest 5-6 hours (nyc). I am so sick with positional vertigo and pots that I probably would’ve gotten an mri or gone to ER even without having read Jeff’s story. I don’t know what to do really. Vertigo can be managed pharmacologically as well as pots, but I don’t know if we’ll enough/that would be safe.

 

[Diwi9]

I live in a very rural area and now I am thinking im. possibly too sick to travel for an upright mri. Closest supine mri is about 45 minute drive , closest upright mri is about 3 hours, second closest 5-6 hours (nyc). I am so sick with positional vertigo and pots that I probably would’ve gotten an mri or gone to ER even without having read Jeff’s story. I don’t know what to do really. Vertigo can be managed pharmacologically as well as pots, but I don’t know if we’ll enough/that would be safe.

I understand. I am familiar enough with your story that I know you don't have the familial support that I am fortunate to have. Maybe start by contacting https://csfinfo.org/ and seeing if they have some ideas/referrals...maybe a supine MRI can be good enough if done properly (different doctors seem to rely on different imaging). CCI could be a dead end, or an answer. If you can have scans and they are positive, perhaps you will receive more support from family.