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

[Gingergrrl]

Am tagging @Strawberry into this thread (b/c you have another similar thread re: CCI/AAI which I also want to respond to shortly) but I was not certain if you have seen this thread? I think this could be a good thread to pose your questions re: traction as well.

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.

This makes sense and sounds like a good plan.

I’m concerned that a supine mri might not show this issue even tho one of the five neurosurgeons accepts or prefers it.

My MRI was supine and both the technician and my PT felt that a supine MRI can actually show a lot and is a good starting point. Although I know we are looking for different things in my case.

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

Thanks, Mary, and I will definitely post them here and hope to have them next week. I spoke to my PT about it this morning (today was my last session with her b/c she is leaving this clinic ) but she gave me her cell ph# and said that she'd love to see my results once I have them.

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

It's hard to know for sure but I have no doubt that the car accident in 2006 played a major role. My car was hit at a high impact and flipped upside down and I had major whiplash from the impact and being hit in the head with the airbag, plus bruises and I got cut by the glass of all the windows, windshield, and sun-roof shattering.

My PT told me that bulging discs can be temporary (in some cases) and it is possible that my recent MRI looks very different from the one I had in 2010. She thinks the area causing the radiculopathy down my right arm is now C5-C6 (vs. on the MRI from 2010, the worst area was C4-C5). She is also going to document (for my new insurance) that 100% that I need to continue with PT in the new year both for my neck pain and to continue to gain overall core/ muscle strength.

I almost ran out of gas in my car on the way to PT and hadn't pumped gas by myself in over 4 yrs b/c of the level of arm weakness. But today I had no choice and figured I'd try and I was able to do it with absolutely no problem! So that was good to find out and proof that this PT is strengthening my muscles.

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/

Thank you for explaining that and I read your link last night (but didn't get a chance to reply until today). I also asked my PT this morning about lordosis and she said that it can be from an injury but there are also some people who are just "born with it" and it causes no problems or pain.

Do you do anything to treat your lordosis? I can't remember if you still see your chiropractor?

CCI could be a dead end, or an answer.

I think that is a really good way to view it and my entire illness has been like this. I continued to test and treat everything that was potentially relevant and that I had access to (even though I never found a Neuro willing to help me). I think if someone has symptoms of CCI, there is no harm in getting an MRI to rule it in or out.

 

[bjl218]

@Gingergrrl, I assume that your MRI was only in one position? That is, you didn't do the flexion and extension positions. I'm guessing that one of the reasons an upright MRI is more expensive is that there aren't that many of them around and/or it's the cost of multiple head positions which effectively means multiple MRIs.

I had a brian and c-spine MRI a few years ago and was shocked to find out that an MRI at a hospital typically costs much more (at least they charge insurance much more) than at an imaging center that is not affiliated with a hospital. I was pretty naive about how medical care/insurance works in the US back then and this sort of thing no longer amazes me...

 

[mattie]

Hi @brando @Yuno @toyfoof , @Malea

I have contacted the mods at Beyond the Measurement. They told me that they're backlogged but are letting people in -- it's just slow.

I'm going to see if I can become a mod or somehow make the approval process faster. I'll keep you updated on this.

Any news there @jeff_w ?
Still no access...

I’d really like to have access to this group before moving forward..
Did anyone from this forum get access to this facebook group in the last couple of weeks?

 

[brando]

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.

I’m basically in the same boat as you. I had my MRI at Medserena London last week and am waiting on Dr Gilete’s evaluation. In the middle of the scan is when I was faced with the reality of the situation, holding my head all the way to the side does NOT feel good, at all. It was like being tortured.
Medserena’s Professor Smith’s evaluation shows “significant” AAI but doesn’t mention CCI, but of course the scans were for Dr Gilete as he’s the specialist. I’ll post in this thread once I have his diagnosis.

Btw, for me there was some confusion with the sending scans to Dr Gilete - to save time, if I were you I’d have the evaluation purchased and questionnaire filled out and just upload all the scans to wetransfer as soon as you get the CDs. You need to explicitly ask Medserena to send your scans to Dr Gilete, I did both for the avoidance of doubt.

 

[Mary]

It's hard to know for sure but I have no doubt that the car accident in 2006 played a major role. My car was hit at a high impact and flipped upside down and I had major whiplash from the impact and being hit in the head with the airbag, plus bruises and I got cut by the glass of all the windows, windshield, and sun-roof shattering.

Hi @Gingergrrl - sorry to take so long to get back to you here - I've had a lot going on personally and otherwise. Anyways, that accident sounds horrific! I've never been in a major car accident. I just can't imagine it, it sounds like you were lucky to survive Yes of course I'm sure it played a major role in your neck issues.

My PT told me that bulging discs can be temporary (in some cases) and it is possible that my recent MRI looks very different from the one I had in 2010.

I hope your new MRI shows improvement! I didn't know that bulging discs could improve, that's good to hear!

I almost ran out of gas in my car on the way to PT and hadn't pumped gas by myself in over 4 yrs b/c of the level of arm weakness. But today I had no choice and figured I'd try and I was able to do it with absolutely no problem! So that was good to find out and proof that this PT is strengthening my muscles.

Do you do anything to treat your lordosis? I can't remember if you still see your chiropractor?

Mine could have been caused when I was about 11, and the trunk lid of one of the old cars - when they were made of steel and very heavy - the lid fell on top of my head. It stunned me, literally. Though I never told my parents (, ) there were 10 of us kids so unless you had a bone sticking out or something, you didn't bring it up. And what could they have done anyways?

I ended up going to see a chiro who specializes in upper neck issues. He found my atlas vertebra was out of place - I may be saying this wrong I don't know how else to describe it! He took a lot of measurements - e.g., my weight was unevenly distributed on my feet, also my legs were different lengths, and after the adjustment, these resolved. However, in general I felt no better or different after the adjustment. Actually, one thing happened - the constant tightness in my neck eased about halfway. It's still there, but half as bad as before.

My original chiropractor gave me a neck brace (soft) to try wearing maybe an hour or 30 minutes a day. I've worn it some, but didn't feel any different. But I haven't been regular about it either.

 

[Malea]

Did anyone from this forum get access to this facebook group in the last couple of weeks?

Yes, I got accepted some time after I wrote an admin a pm and asked her for access.

 

[toyfoof]

I still have not been accepted.

 

[Diwi9]

Any news there @jeff_w ?
Did anyone from this forum get access to this facebook group in the last couple of weeks?

I did. It took a few weeks. I followed up with a personal message to one of the administrators.

 

[frozenborderline]

My CFS doctor is not really pulling through on this. First she called the cci stuff a “bandwagon”. Then when she realized how sick got quickly at the beginning of December she agreed to order the mri. Then when she realized she would have to call to do a preauthorization and maybe an appeal she again refused to do it
I think she has a very small staff in her office. I am not really even getting any meds that help with symptoms in the meantime

 

[Diwi9]

My CFS doctor is not really pulling through on this. First she called the cci stuff a “bandwagon”.

That sort of attitude is really unhelpful. I have a CCI DX...do I know if it is legit? No, I'm going through steps now to determine that. When a specialist in ME/CFS makes this sort of statement, it's no different than a GP dismissing ME/CFS as a "wastebasket" diagnosis. Damn...we are not our diagnoses. If a physician can't determine what we have with confidence...they need to keep looking.

 

[frozenborderline]

That sort of attitude is really unhelpful. I have a CCI DX...do I know if it is legit? No, I'm going through steps now to determine that. When a specialist in ME/CFS makes this sort of statement, it's no different than a GP dismissing ME/CFS as a "wastebasket" diagnosis. Damn...we are not our diagnoses. If a physician can't determine what we have with confidence...they need to keep looking.

The attitude is insane bc it’s a diagnosis that is more verifiable and simple than me/cfs. Not that me/cfs is not a legitimate dx but all that’s needed to dx this is the right kind of mri ...

 

[Diwi9]

The attitude is insane bc it’s a diagnosis that is more verifiable and simple than me/cfs. Not that me/cfs is not a legitimate dx but all that’s needed to dx this is the right kind of mri ...

It's a freaking diagnostic, it's not the end or the world. Too many hang ups in medicine. If someone is sick and you don't understand why...rule as much as you can out. I don't shed a tear for insurance companies. You are young and have much more benefit to life, family, and society, if you can be improved. I hope you are able to continue with diagnostics. It's a shame that sick people are forced to have to go into battle with people who are supposed to be helping.

 

[frozenborderline]

It's a freaking diagnostic, it's not the end or the world. Too many hang ups in medicine. If someone is sick and you don't understand why...rule as much as you can out. I don't shed a tear for insurance companies. You are young and have much more benefit to life, family, and society, if you can be improved. I hope you are able to continue with diagnostics. It's a shame that sick people are forced to have to go into battle with people who are supposed to be helping.

At this point I would pay for the mri too. But the doctor not even willing to TRY to get a preauthorization

 

[frozenborderline]

It's a freaking diagnostic, it's not the end or the world. Too many hang ups in medicine. If someone is sick and you don't understand why...rule as much as you can out. I don't shed a tear for insurance companies. You are young and have much more benefit to life, family, and society, if you can be improved. I hope you are able to continue with diagnostics. It's a shame that sick people are forced to have to go into battle with people who are supposed to be helping.

Chiari is part of the listed differential diagnosis for ME by at least one source I think. Maybe I will be able to make this case to my doctor

 

[Diwi9]

Chiari is part of the listed differential diagnosis for ME by at least one source I think. Maybe I will be able to make this case to my doctor

I don't think there is any official diagnostic rule-out list of differential diagnoses...the CDC has not been interested enough. But within the community...certainly Chiari is one known that can mimic ME/CFS presentation. The big problem for PwME is that so few practitioners are educated about Chiari, let alone ME/CFS. It's a black hole. MEAction discussed this at NIH. No one is this stupid...it's willful ignorance at this point...and happens at multiple levels of medicine, science, and government. Apparently, it is easier to blame the individual for their health problems (i.e. the British BPS group, brain-rewiring gurus, and the positivity movement). I once again challenge if anyone actually has normal blood tests?

Can we do one test and affirm someone is sick with ME/CFS? No. Can we watch people over a course of time and observe through clinical presentation AND diagnostics that something is wrong? Yes.

Sadly, we are not the only illness to suffer this fate, but we are the most underfunded and likely the most stigmatized.

 

[Mary]

At this point I would pay for the mri too. But the doctor not even willing to TRY to get a preauthorization

I'm sure you've thought of this and I know good doctors are scarcer than hen's teeth, but have you thought of or are you able to get a different doctor? That's unconscionable that she won't even try, especially after first agreeing to do it - there's no excuse!

 

[toyfoof]

I'm sure you've thought of this and I know good doctors are scarcer than hen's teeth, but have you thought of or are you able to get a different doctor? That's unconscionable that she won't even try, especially after first agreeing to do it - there's no excuse!

@debored13 My CFS doc was also really reluctant about the CCI thing and, while he didn't use the word "bandwagon," he implied it. My primary care physician (a different doc, who I basically see for migraine meds), however, was happy to put in the MRI order and open to the idea. Do you have a PCP or NP or someone who might be more willing to advocate for you?

 

[Wayne]

It's a black hole. MEAction discussed this at NIH. No one is this stupid...it's willful ignorance at this point...and happens at multiple levels of medicine, science, and government. Apparently, it is easier to blame the individual for their health problems (i.e. the British BPS group, brain-rewiring gurus, and the positivity movement). I once again challenge if anyone actually has normal blood tests?

Can we do one test and affirm someone is sick with ME/CFS? No. Can we watch people over a course of time and observe through clinical presentation AND diagnostics that something is wrong? Yes.

Great post @Diwi9, I wish I had written that! -- BTW, I'll bet you're not a conventional health professional. You have too much common sense for that!

 

[frozenborderline]

I'm sure you've thought of this and I know good doctors are scarcer than hen's teeth, but have you thought of or are you able to get a different doctor? That's unconscionable that she won't even try, especially after first agreeing to do it - there's no excuse!

I’m seeing a POTS neurologist who from what I’ve heard will push for this imaging as well as other important stuff, but that’s not until March. I just can’t wait , I’m in more pain than I’ve ever been and also this past almost month (time has flown by I guess) I’ve been fully bedridden besides bathroom crawling for the first time in my life—not just spending a lot of time in bed but just really not being able to get out, and this is unacceptable to me. I know that being bedridden can be hard on your health and if the doctors could give me home saline or refer me to the MRI this ordeal could be over with faster.

In fact I’m fairly sure I have cci, not just because it may be common in cfs patients but because of very specific neurological symptoms I didn’t elaborate on earlier in this thread—some crashes, the worst one being the one I’m in, where I had strong dyspnea, very positional vertigo, worsened pots, and when standing felt neck/head sinking, all of the vertigo slightly alleviated by collar but not totally... get some relief from the fairly weak traction my mom gives. All of this makes me a strong candidate for this. For the first time in being sick I feel close to 100 % sure about something that could lead to a cure. Now dr is in the way

I live in rural Vermont. My cfs doctor is Susan Levine in Nyc. Now I wish it was Kaufman but he doesn’t take insurance. I don’t know that I can get a phone consult with a doctor that would be willing to order an mri just based on my symptoms. I don’t know about getting a new doctor while this sick. A chiropractor who doesn’t take insurance talked about being able to order upright mri but I don’t want an adjustment until I get the imaging. Money is tight. I am trying to fundraiser but these costs spiral.

 

[frozenborderline]

@debored13 My CFS doc was also really reluctant about the CCI thing and, while he didn't use the word "bandwagon," he implied it. My primary care physician (a different doc, who I basically see for migraine meds), however, was happy to put in the MRI order and open to the idea. Do you have a PCP or NP or someone who might be more willing to advocate for you?

My pcp is used to working with Levine and doing things based on her recommendations. He wants to wait for her approval