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

[Dakota15]

@debored13 - Can I ask what a "POTS neurologist" is?

 

[Mary]

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

So are you saying that Susan Levine is the one who won't order the MRI because she would have to get pre-authorization? But that your PCP will do things based on her recommendations? If this is the case, maybe you could argue to Levine that since she was originally willing to order the MRI but won't now because of the pre-authorization requirement, that she recommend that your PCP order it.

And I may have misunderstood the situation here and if so, ignore what I just said!

You do sound like a candidate for CCI - there's got to be a way to get an MRI. You said there is a chiropractor who can order it. Would your insurance pay if he ordered it? I can't imagine the chiro would require you to get an adjustment before having this test since you are in such a fragile state.

I wish doctors had an inkling of what patients are going through in trying to get medical care!

 

[toyfoof]

So are you saying that Susan Levine is the one who won't order the MRI because she would have to get pre-authorization? But that your PCP will do things based on her recommendations? If this is the case, maybe you could argue to Levine that since she was originally willing to order the MRI but won't now because of the pre-authorization requirement, that she recommend that your PCP order it.

I agree, this sounds like a good way to proceed. This way Dr. Levine doesn't have to worry about the insurance hassle and all your doctors will be in the loop. Good luck!

I am still waiting both for the report from the imaging center, and from Dr. B's office, on my MRI results. It's been one week so I figure it could take some time.

 

[frozenborderline]

So are you saying that Susan Levine is the one who won't order the MRI because she would have to get pre-authorization? But that your PCP will do things based on her recommendations? If this is the case, maybe you could argue to Levine that since she was originally willing to order the MRI but won't now because of the pre-authorization requirement, that she recommend that your PCP order it.

And I may have misunderstood the situation here and if so, ignore what I just said!

You do sound like a candidate for CCI - there's got to be a way to get an MRI. You said there is a chiropractor who can order it. Would your insurance pay if he ordered it? I can't imagine the chiro would require you to get an adjustment before having this test since you are in such a fragile state.

I wish doctors had an inkling of what patients are going through in trying to get medical care!

. At this point I can cover it out of pocket and would expect it to get denied and I know Albany can squeeze me in by next weekend if they get an order soon and only costs 600$. But Susan Levine hung up on my sister today and seems very annoyed. I don’t know that she is willing to work with us on this.
It’s so insane to me that I’m thiissss close to getting it done, all details figured out , and the doctors just won’t pull the trigger on it. Don’t feel I have time to switch doctors at this point. Maybe my best bet is the chiro but I’m already thinking that travelling for the upright mri will be super tough, that makes two trips, I don’t know if he can be convinced to order it regardless of what he finds in his observation, he doesn’t take insurance, etc
Susan Levine has done some good things for me—good labwork and ordered saline, but I really think she needs more staff in her office and to not have such a dismissive attitude. I feel strongly that there are cfs doctors out there that would not only do the order but do the research on all of the details and push it through insurance. I largely went with dr Levine because she took insurance. Well I guess I’m paying the price in a sense

 

[frozenborderline]

I have talked to people about this and really don’t feel like letting the chiro do even small manipulations is a good idea. It’s a lose lose. Either he makes me worse or doesn’t help or his manipulations are good and in the latter case might cause the issue to not show in an mri. He’s a nucca chiropractor that does small amounts of force and not supposedly a real backcracker but still

 

[Mary]

This is crazy (as you know!) One thought - I can see it's getting difficult to work with Susan Levine (and I'm so sorry to hear this! It's just not right), but since you can pay out-of-pocket for the MRI, can you just tell her that you will pay cash for it, so she could order it without having to deal with the insurance?

Or could your PCP just order it on his own? though I'm sure you've looked into this already.

Re the chiro - since you would be paying out-of-pocket for him, he would not be bound by any insurance requirements so it might be possible that he would order it for you, but absolutely without making any adjustments. I would definitely make it clear to him that he cannot touch you. I know what you're saying about making 2 trips though . . .

 

[toyfoof]

This is horrible! I wonder if the MRI place would be any help, maybe they know docs who will help you order it, especially since you could pay out of pocket. I am so frustrated for you! I don't see any negative to getting an MRI (I mean, it's better on your body than a blood draw!) so I don't know why docs are being so obstinate about it.

 

[Gingergrrl]

@Gingergrrl, I assume that your MRI was only in one position? That is, you didn't do the flexion and extension positions.

That is correct and it was a regular supine MRI in one position (not upright and no flexion/extension positions). We do not suspect in my case though that I have CCI vs. excruciating neck and arm pain (just on the right side) for other reasons.

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...

Definitely anything done at a hospital is ALWAYS more expensive than if it is done NOT at a hospital. Hospitals tack on all kinds of extra charges and "facility fees" etc. For example (at least in my area) if you have blood tests at an outpatient hospital lab, it can be 3-4x the cost of the same blood test at a non hospital lab (like Quest or LabCorp). The same thing for hospital based infusion centers, imaging centers, etc.

I had my MRI at a free-standing imaging center that had nothing to do with any hospital. Vs. I had my (prior) IVIG and (ongoing) Rituximab at a hospital based outpatient infusion center b/c this was much safer and necessary in my case.

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.

No worries, Mary, and I totally understand! Yes, my car accident was horrific and my dog was in the car (she was a 10-month old puppy at the time) and thank God, I had her strapped into a seatbelt harness in the backseat which literally saved her life. From the point of impact, I was told that if I'd had a passenger in the front seat, they would have been killed (but luckily I did not)!

I was very lucky to have survived and once my car flipped upside down and landed at a diagonal on the opposite side of a very busy street, if another car would have hit me while I was upside down, I think I would have been killed. But no one else hit us and I was able to release the seatbelt and crawl upside down out of the broken window and some amazing bystanders helped me get my dog out of the car.

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

Thank you and my doctor has the results now but I have not had the opportunity to connect with him yet. I had to contact his office for a new Auth for PT (b/c I have new insurance in Jan) and med refills and his nurse told me that the MRI results arrived but he hasn't had a chance to look at them yet. I totally understand with the holidays and everything is about to shut down. I was able to get a copy of my MRI results from 2010 (which I think I summarized in an earlier post)?

My PT said that bulging discs can improve depending on the reason for them. It's possible I had so much inflammation (this might not be the right word) from the car accident and neurotoxic reaction to Levaquin 4 yrs later, that has now improved (vs. if due to other reasons, the bulging discs might not improve). My neck and arm pain is drastically worse (which is also why I wasn't able to type a lot this week) but it may not be due to bulging discs. I have no idea what this MRI will show.

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.

Wow, I am sorry that happened to you and I would think it could be a contributing factor!

I ended up going to see a chiro who specializes in upper neck issues. He found my atlas vertebra was out of place

How did he determine that your atlas vertebra was out of place? Was it from an x-ray or MRI or just by feeling it?

Then when she realized she would have to call to do a preauthorization and maybe an appeal she again refused to do it

Pre-Auths are required for so many meds, infusions, procedures, etc, I don't see how a doctor could just refuse to even attempt to get one. This is horribly bad practice. I understand that sometimes you do multiple appeals and there is just nothing further that can be done but we are talking about an MRI here! (The situation makes me and my rant is NOT directed at you)!

I don't shed a tear for insurance companies.

This is my quote of the day. Well said.

I wish doctors had an inkling of what patients are going through in trying to get medical care!

Agreed

But Susan Levine hung up on my sister today and seems very annoyed. I don’t know that she is willing to work with us on this.

Wow, that is horrible that she hung up on your sister! I had heard great things about her but this is not good. I had a thought and please disregard if not helpful. Since you are willing to pay privately for the MRI, what if you offered to pay Dr. Levine for her time that she works on the Prior Auth? Meaning if she spends two hours on it, you would pay her for those two hours (which I assume is still cheaper than the MRI itself and then there is a chance of the Auth being approved)?

 

[Mary]

How did he determine that your atlas vertebra was out of place? Was it from an x-ray or MRI or just by feeling it?

He took x-rays. And then he measured weight distribution on my feet, and there was a variance of maybe 35 lbs. or so between one foot and the other - he uses two scales for this. And he also measured my leg lengths, one was an inch or so longer than the other. After the adjustment, he re-measured everything and both weight distribution and leg length were improved. I followed up with 3 or 4 return visits and the adjustment held. Although I had this done some 8 years ago by a different chiropractor, same experience. And the adjustment did not hold for 8 years.

I had been hoping to see improvement in my ME/CFS symptoms, but there were none.

 

[Malea]

Update for the Facebook Group:

@JenB mentioned in the group that people are waiting to get accepted. An admin answered that there has been a big problem with fake profiles in the group. So they have to check every profile personally before accepting it. Which takes a huge load of time when there are a hundred people asking to get in the group every week.

 

[Malea]

Question. Do others with (suspected) CCI experience an extreme tightness of the throat, too?

It was one of my first symptoms of (suspected) CCI along with a „wobble“ and too heavy head half a year ago.

I than started using a neck collar some months ago because I wasn‘t able to be upright without it anymore. Now, if I‘m upright only seconds without the collar the tightness is worsening extremely. It feels like my trachea is squeezed permanently. This lasts for 1-2days and makes sleeping impossible.

 

[Wayne]

Question. Do others with (suspected) CCI experience an extreme tightness of the throat, too?

Aye, that and any number of other pain/tenderness, etc. symptoms

 

[frozenborderline]

He took x-rays. And then he measured weight distribution on my feet, and there was a variance of maybe 35 lbs. or so between one foot and the other - he uses two scales for this. And he also measured my leg lengths, one was an inch or so longer than the other. After the adjustment, he re-measured everything and both weight distribution and leg length were improved. I followed up with 3 or 4 return visits and the adjustment held. Although I had this done some 8 years ago by a different chiropractor, same experience. And the adjustment did not hold for 8 years.

I had been hoping to see improvement in my ME/CFS symptoms, but there were none.

This sounds like what the NUCCA chiro that I may have to see to get the mri does. I still don’t want him to touch me , esp given my awful experience with a PT today, but maybe could get him to do mri first anyway

 

[frozenborderline]

He took x-rays. And then he measured weight distribution on my feet, and there was a variance of maybe 35 lbs. or so between one foot and the other - he uses two scales for this. And he also measured my leg lengths, one was an inch or so longer than the other. After the adjustment, he re-measured everything and both weight distribution and leg length were improved. I followed up with 3 or 4 return visits and the adjustment held. Although I had this done some 8 years ago by a different chiropractor, same experience. And the adjustment did not hold for 8 years.

I had been hoping to see improvement in my ME/CFS symptoms, but there were none.

This sounds like what the NUCCA chiro that I may have to see to get the mri does. I still don’t want him to touch me , esp given my awful experience with a PT today, but

 

[Mary]

This sounds like what the NUCCA chiro that I may have to see to get the mri does. I still don’t want him to touch me , esp given my awful experience with a PT today, but maybe could get him to do mri first anyway

Absolutely. The chiro who treated me did do an adjustment on my Atlas vertebra, but you don't want that (as you know!). You are much more severe than I was and if you have CCI or something similar, the last thing you want is someone messing around with your neck. Plus CCI is not the same thing at all as what I had.

 

[Malea]

Aye, that and any number of other pain/tenderness, etc. symptoms

Such a nasty symptom

Do you have any theory what that is or have you found anything helpful for it?
My only idea is that it is because of irritated muscles/ ligaments/ nerves in that area..

 

[Gingergrrl]

He took x-rays. And then he measured weight distribution on my feet, and there was a variance of maybe 35 lbs. or so between one foot and the other - he uses two scales for this. And he also measured my leg lengths, one was an inch or so longer than the other. After the adjustment, he re-measured everything and both weight distribution and leg length were improved. I followed up with 3 or 4 return visits and the adjustment held.

I'm sorry for my slow reply and thank you for that detailed description @Mary! I have never had a chiropractor or PT take any measurements like that and it sounds really interesting.

I had been hoping to see improvement in my ME/CFS symptoms, but there were none.

The chiro who treated me did do an adjustment on my Atlas vertebra,

Do you remember what the Atlas adjustment specifically involved? I don't think it pertains to my neck and arm pain but I am still very curious!

 

[Mary]

I'm sorry for my slow reply and thank you for that detailed description @Mary! I have never had a chiropractor or PT take any measurements like that and it sounds really interesting.







Do you remember what the Atlas adjustment specifically involved? I don't think it pertains to my neck and arm pain but I am still very curious!

Hi @Gingergrrl - I've been crashed today and just starting to recover, so I'll reply to this later after Christmas - I just wanted to say I hope you have a good holiday!

 

[Daffodil]

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

i am thinking of traveling to Latham NY for an upright MRI. I just called them and without contrast, it is $600USD. With contrast, it is $800.

 

[brando]

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.

A wee update for you, I got the evaluation from Dr Gilete today confirming the AAI and Chiari and adding CCI, suggesting a few more scans including angiogram to get more detail. I'm in the UK and am going to take the evaluation (as well as the report from the clinic professor neurologist) to an NHS neurologist and/or neurosurgeon and see how far I get. Going to update my (mercifully helpful) GP tomorrow hopefully. Not to get ahead of myself but after 12 years of searching and this is the first thing that fit's the bill, I'm feeling a huge release (not relief), cried for ages - really scared!
Would *really* love to get accepted to the Beyond The Measurement group right about now!

ps: Somewhat strangely after the scans got done I've gotten a bad ear infection, wondering if the head movement has messed something up, I've had hearing loss/tinnitus in that ear for 2 weeks now.. or maybe I was run down with all the action. My allergies seem to have went into overdrive too.

@jeff_w if you are still keeping a tally, you can officially add another to the list of people diagnoses with CCI/AAI and Chiari because of you!