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

Daffodil

Daffodil

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@Wayne aww thanks:) you made me smile.

dreampop said:
Daffodil, it's important to remember that CCI's et al. relationship to ME/CFS is unclear. It may be that there is a relatinship, but not a linear one. That Rowe case report on stenosis leaves out plenty of people have stenosis, get the surgery and it has no impact on their ME/CFS. That may also be true for CCI.

Thus, if you're having no symptoms of CCI, I'm unsure why you would feel the need to rush through this stuff. Maybe it's just ME/CFS. Take your time and consult the doctors you need to first.
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you are right and its just so incredibly frustrating. i would love to hear from people who had the surgery and still had all the neuro problems. that is a very good point i can't let myself forget.
xo
 
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StarChild56

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Daffodil said:
ps can you imagine ?? C0-T1 fusion?? thats my whole neck! and i was worried they would find nothing hah. be careful what you wish for, as the say
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No, I can't. But I do know that the lower levels are in danger of needing fusions due to the upper level fusion. I also know that the better your postural/structural base is the more successful your surgery and recovery will be...one PT and Osteopath basically says you can't have a successful surgery if you don't work on those issues.

Someone else posted this...not sure if in this thread but here is the video, it is long but well worth it and he discusses structural issues at about the 20 min. mark.

And all of my discs in my neck are shot, really bad so I know I will face further fusions. Determined to support my neck as much as possible though.
 
Daffodil

Daffodil

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so I was doing some reading...even if I were to marry an American, I would have to wait 2 yrs to get a green card and then apply for insurance....OR I think I can be added as a dependant on the man's insurance plan? not sure

and my idea of marrying my ex who is in prison wouldn't work either because I think the man has to fit certain criteria...they do background checks and such
 
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Daffodil

Daffodil

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@StarChild56 thank you I will watch..even though manual manipulation scares me to death lol

it would be nice if brain stem compression was visible on the imaging so I could see if the things I am doing is making a difference ...

xo
 
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StarChild56

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Daffodil said:
@StarChild56 thank you I will watch..even though manual manipulation scares me to death lol

it would be nice if brain stem compression was visible on the imaging so I could see if the things I am doing is making a difference ...

xo
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Oh I do NOT recommend any manual manipulation nor does this PT/Osteopath. My own PCP told me I could be paralyzed and NEVER to have any manipulation on my neck and that was before my latest and worse MRI. And the PCP was very pro-Chiropractic for my other back issues.

I feel - for me - that I don't need to see the brain stem compression because I know what my symptoms are that are caused by it and I just want it fixed...but also because all the ultrasounds I've had with 3 pregnancies, all the x rays, MRIs and CTs I've had - they are all just about indecipherable to me even when docs point things out to me so I am hopeless in that regard.

No matter what - my brain stem being compressed is dangerous and it needs to stop. I guess that is the bottom line for me. I'd love it if I could be like Jeff and resolve my POTS and MCAS but I have no idea if it will. I have autoimmune issues so my POTS may not change at all (and it is one of my 3 or 4 most debilitating issues). But it will help my excruciating neck pain, migraines, pain at the base skull/top of neck. That alone is a huge deal.
 
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ashleyO

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i am not very good at reading these threads/using forums so sorry if this has already been covered, but does anyone think that vestibular therapy is helpful to address or at least decrease some of the symptoms of potential CCI? i have chronic vertigo and have heard that vestibular therapy can help that, but am afraid to do much without the imaging/diagnosis or knowing what the cause of it is
 
Daffodil

Daffodil

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@StarChild56 if you have headaches and neck pain then you will indeed be helped, i am sure.

do you have brain fog?

so if not manual manipulation, what was the doctor in the video talking about? i watched about 15 min of it started from the 20 min mark

i would be so happy to just be able to read a book before i die :-/
 
Gingergrrl

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Daffodil said:
@StarChild56 @Gingergrrl a DMX is a digital motion x-ray. sort of like a short movie...so they can see the bones as you move. i believe henderson asks for this as well
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Thanks for explaining and I had not heard of a DMX before.

Daffodil said:
so I was doing some reading...even if I were to marry an American, I would have to wait 2 yrs to get a green card and then apply for insurance....OR I think I can be added as a dependant on the man's insurance plan? not sure
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I hate to be a downer but the situation in the US is completed f*cked up right now and there is no guarantee, even if you married an American, that you would ever get a green card or medical insurance. I would honestly eliminate this as an option and don't think it is viable. I do, however, think it is very possible that you could do a private consult with an American doctor similar to what you did with KDM in Belgium (except more expensive).

StarChild56 said:
Oh I do NOT recommend any manual manipulation nor does this PT/Osteopath. My own PCP told me I could be paralyzed and NEVER to have any manipulation on my neck and that was before my latest and worse MRI. And the PCP was very pro-Chiropractic for my other back issues.
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I agree and even in my case (which is very different and I do not have CCI), I am not supposed to do any manual manipulation of the neck. I have cervical radiculopathy (basically a fancy way of saying that I have neck pain that shoots down my right arm). I have done manual traction of my neck, ultrasound on my neck, etc, but absolutely no manipulation and if this is done incorrectly, it can lead to someone being paralyzed. Please be careful!
 
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StarChild56

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Daffodil said:
@StarChild56 if you have headaches and neck pain then you will indeed be helped, i am sure.

do you have brain fog?

so if not manual manipulation, what was the doctor in the video talking about? i watched about 15 min of it started from the 20 min mark

i would be so happy to just be able to read a book before i die :-/
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I have severe and debilitating brain fog. I can't load my own med boxes without making bad mistakes - every time. My family has to do it for me.

He talks about a lot - the structure of the body and how all the things relate (like low back pain and neck pain, which I have both, severe and never knew) - about what CCI is...and about the importance of fixing your posture/structural support in order to have a good result with surgery and many other things.


Daffodil said:
i would be so happy to just be able to read a book before i die :-/
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I used to be an avid reader. I could demolish a book in a night or two. I can not read books any longer and it is one of the worst things for me, too.
 
Gingergrrl

Gingergrrl

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ashleyO said:
i am not very good at reading these threads/using forums so sorry if this has already been covered
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Hi Ashley, I wanted to let you know that your friend @debored13 tagged me last week (two weeks ago?) to see if I could give you some referrals in LA and I tried to send you a PM (private message) but it did not go through. I gave the info on my doctors to him so that he can give it to you. But if you still need it or have other questions, can you send me a PM or ask the moderators to check why they are not going through? I noticed that you started some other threads and will reply to you there as well (if I can find them again)!
 
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ashleyO

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Gingergrrl said:
Hi Ashley, I wanted to let you know that your friend @debored13 tagged me last week (two weeks ago?) to see if I could give you some referrals in LA and I tried to send you a PM (private message) but it did not go through. I gave the info on my doctors to him so that he can give it to you. But if you still need it or have other questions, can you send me a PM or ask the moderators to check why they are not going through? I noticed that you started some other threads and will reply to you there as well (if I can find them again)!
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thank you so much!
 
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ashleyO

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does anyone have advice of how to convince a doctor to order CCI imaging for you? my current PCP told me he would not order the MRI for me in spite of my showing him @jeff_w 's website. also is an upright MRI of the cervical spine and skull with rotation, flexion, and extension the best imaging to determine if one has CCI?

the reason i think i may have it are mainly the following symptoms: i have trouble lifting/raising my head up and it makes sitting upright and standing very difficult, my neck always feels to be drooping; i have chronic vertigo, dizziness, and a sense of confusion/disorientation; i get close to blacking out frequently which seems to correspond to movements of my head; i have elevated heart rate from sitting or standing and even sometimes while laying down, seemingly at random; i have trouble breathing and heaviness in my chest; i have severe nerve pain, weakness, and discomfort in the back of my neck/upper spine. also, a few years ago on a CT scan it was found that i have tarlov cysts (ruled benign but i wonder if there is an association).

i am absolutely open to seeing another PCP in my area (los angeles CA) but have no idea where to start. i am seeing a rheumatologist in a couple weeks and wonder if he could possibly order the MRI for me? should i bother to ask? and is there a way to try to get insurance to cover it? i'm worried that, even if a supine MRI is more easily covered, it would not show the presence of CCI as easily. i appreciate any advice anyone has to offer, thank you!
 
frozenborderline

frozenborderline

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used_to_race said:
It seems like people are getting diagnosed using supine MRIs? Is that now considered to be just as good for diagnostic purposes as the upright MRI with flexion/extension?
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there are some supine mri places that can do flexion and extension. Bolognese also wants a supine 3T mri specifically. But I decided to go with upright mri with flexion and extension despite bolognese sayin supine, and he said he’d look at whatever I got. I was just worried about supine not being as good. Seems like bolognese thinks he can read supine just as good but uh, gravity seems like a big part of this whole thing. So I got an upright mri w flexion and extension and fucked up by not also getting rotation but I think bolognese has enough to work with and is telling me to now get cervical traction as part of the diagnosis process. I will say, very few people have been told they didn’t have this on this forum, and one of them was via a supine 3T mri
 
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MEPatient345

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@debored13 Will Bolognese not accept 1.5T supine at all for consult? I saw a surgeon today and he insisted 1.5T was better than 3T for spine and has ordered that for me... sighh..
 
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scisolver

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jeff_w said:
So, if structural compression is causing POTS by disrupting the autonomic nervous system, the immune system could try to "solve the problem" by over-producing POTS-related antibodies. See peer-reviewed research on the connection between the autonomic nervous system and the immune system.
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This is exactly what I was thinking. Everybody produces some level of antibodies I believe for most things, or they are detected as such. However, it is only when they are elevated beyond some determined point it is considered to be pathological.

Thus, the compression may be trying to compensate for some reason, or perhaps even outright malfunctioning by telling the immune system to produce those antibodies.

I still don't have an expert to know what images to order though and you said not to rely on the MRI place.

I tried contacting Myles Koby and they said he would call me back which seemed really nice, however I never received a call. So, as far as I know there is no neurological familiar with which scans to get and the neurosurgeon won't see you without a referral. So, I think not even with just a scan.

My dysautonomia specialist is a cardiologist and is familiar with Myles Koby. However, he said to hold off on doing imaging and try some of these medications like Florinef.

I think I can still get upright flexion and extension of cervical spine. I think that would be the one to start with. I already called the upright MRI place and they said they can do skull or cervical spine in one scan, not both.
 
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