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

[Daffodil]

You're welcome! There's an (unofficial) Muldowney group on facebook that shares tips. The book is about $50 from Amazon and even has a section for physical therapists to read (that might be useful to share with your chiropractor).

thank you! i will bring this up to my chiro. i did look it up and it looks interesting. i will admit i am sceptical that these conservative approaches can help me, but you never know. at least i am on to something here.!

 

[Daffodil]

Yes I gave up on treatment. I'm not sure what I'm going to do! I don't think I need surgery as I'm only mild-moderate CFS and still working full time (but unable to cook or clean for myself). But not sure what will help me, or even how much my neck is the contributor. Surgery is too big of a risk for me when I'm still functioning.

oh absolutely agree. i wouldnt have surgery either if i were you...at least not yet

 

[Daffodil]

Thanks for the replies. How is flexion and extension done with a supine MRI? I have had a few MRIs in the past and they always put a brace on my head to keep it from moving during the scan. Is there a chance of the upright scan picking up something the supine will miss? I guess I am confused what upright is used for if the same conditions can be seen in supine.

@GypsyGirl, I am planning to send my scans to probably two neurosurgeons to review. Since I likely can do a upright MRI locally I feel I probably should do that as I have never had one done, it may show things that were missed in my neck MRI years ago. Though if flexion and extension can be done supine then it may not matter.

personally i would think an upright would be better....and you are right...i dont know how they do flexion and extension while you are laying down.....maybe they reposition your head without that brace thing....i have one scheduled myself next month but i doubt i will be allowed to do it in the 3T machine

 

[GypsyGirl]

Thanks for the replies. How is flexion and extension done with a supine MRI? I have had a few MRIs in the past and they always put a brace on my head to keep it from moving during the scan. Is there a chance of the upright scan picking up something the supine will miss? I guess I am confused what upright is used for if the same conditions can be seen in supine.

@GypsyGirl, I am planning to send my scans to probably two neurosurgeons to review. Since I likely can do a upright MRI locally I feel I probably should do that as I have never had one done, it may show things that were missed in my neck MRI years ago. Though if flexion and extension can be done supine then it may not matter.

From what I've read and what others have told me, flexion/extension can be sort of done in the supine MRI by using padding. Many radiologists don't know how to do it (it's non standard), and it's difficult to show full range of motion this way. (But some have reported being dx-ed this way, so it's possible.) It's not going to show the full effects of gravity as it would if you were upright, and how big that difference is depends on your ligament laxity. Some people may have no difference in their supine and upright MRIs; for others, it will make the diagnosis that otherwise wouldn't have been made.

Upright needs to be done for Chiari (says Henderson). With instability, upright can make a difference for those with ligament laxity since their supine imaging is likely to come back normal, without significant findings. Upright is usually a lower quality picture (.6 Telsa) vs supine MRIs (lots of 1.5T machines, and some even better 3Ts). Upright for other things seems slightly less defined in general and more based on neurosurgeons' preference.

Severe instability might be seen on supine MRIs (or other imaging). Severe or mild instability doesn't necessarily mean severe or mild symptoms, that's another reason it's hard to guess what's appropriate. People can have disabling symptoms from very small Chiari or "mild" instability, and might be told over and over again that everything is normal. There are also different kinds of instability - vertical, horizontal, rotational. To catch ligamentous failure in imaging, you must take pictures to capture the instability (possibly on bones that look absolutely healthy, with no pathology). For example, a supine MRI in flex/ext might come back normal. But an upright MRI might show vertical instability not apparent without the effects of gravity/sitting up. Or an upright MRI might come back normal, but a rotational CT will show rotational instability that doesn't show up on an upright MRI. Etc.

Neurosurgeons have different preferences, so your best bet is to call your neurosurgeons and ask what's their standard so you can give them what they're best at reading. It's a start. You may need to get other imaging afterwards anyway, depending on what they see in your imaging or find out in your exams.

I hope that helps. I'm writing up a paper for myself and other doctors as a crash course in imaging for EDS; it's not quite finished but I'm glad to send you a copy of the draft to your email if you'd like. It expounds on the things I'm saying here in a more orderly fashion.

 

[frozenborderline]

Bolognese will also accept upright with flex ex wven tho it’s not what he prefers. So if you are looking to do one mri that you send to multiple neurosurgeons you might wanna do upright. I wish I’d flexed and exed a little harder but apparently if bolognese needs additional imaging he’ll order it himself.

 

[Daffodil]

[

You're welcome! There's an (unofficial) Muldowney group on facebook that shares tips. The book is about $50 from Amazon and even has a section for physical therapists to read (that might be useful to share with your chiropractor).

hi gypsy so i was looking up the reviews of the book by muldowney...some have given bad reviews of the book, saying the exercise are too hard, can make you worse, and need to be done while seeing a PT very often. someone in the review section mentioned that the book was recommended to them by a neurosurgeon in DC...i wondered if it was henderson. anyway, there are a few videos on youtube featuring exercises to help hold the correction....but i had better ask the chiro before i do them.

anyway, thanks again for the info!

xox

 

[Daffodil]

Bolognese will also accept upright with flex ex wven tho it’s not what he prefers. So if you are looking to do one mri that you send to multiple neurosurgeons you might wanna do upright. I wish I’d flexed and exed a little harder but apparently if bolognese needs additional imaging he’ll order it himself.

hi debored13 so will you be sending your scans to dr. B? i am curious to see what diagnoses others get. i have to go to buffalo for a 3T MRI it looks like..we have 2 or 3 machines in Toronto but they are restricting what they can be used for ! ugh canada

 

[GypsyGirl]

[

hi gypsy so i was looking up the reviews of the book by muldowney...some have given bad reviews of the book, saying the exercise are too hard, can make you worse, and need to be done while seeing a PT very often. someone in the review section mentioned that the book was recommended to them by a neurosurgeon in DC...i wondered if it was henderson. anyway, there are a few videos on youtube featuring exercises to help hold the correction....but i had better ask the chiro before i do them.

anyway, thanks again for the info!

xox

I know some folks in my local EDS group are working with the same PT I am, doing the Muldowney protocol while under Dr. Henderson's care. I can't afford to see a neurosurgeon and travel at this time. But a friend bought me the book - I find it useful to refer to and think it's sound theory, the best I've seen for EDS, and I've had a lot of mostly unsuccessful PT before. The book is easy to follow with clear instructions. I see a PT every 6 weeks; I simply can't afford more. Despite all that, I do his (the PT) exercises and am working doing the Muldowney protocol in order too, and do them most days, though I can't everyday. My PT has adapted some exercises so I can do everything on the floor since I have trouble being upright. The bulk of work is on me.

I haven't gotten worse. My neck hasn't gotten better, but I haven't started the neck exercises yet, still working my way up. There is some soreness in working weak muscles, but not the "bad pain" I get from overexerting. My shoulders, pelvis, and hips seem to be subluxing less. So far, it's a good experiment, though inconclusive. Wishing you the very best as you experiment.

 

[Daffodil]

I know some folks in my local EDS group are working with the same PT I am, doing the Muldowney protocol while under Dr. Henderson's care. I can't afford to see a neurosurgeon and travel at this time. But a friend bought me the book - I find it useful to refer to and think it's sound theory, the best I've seen for EDS, and I've had a lot of mostly unsuccessful PT before. The book is easy to follow with clear instructions. I see a PT every 6 weeks; I simply can't afford more. Despite all that, I do his (the PT) exercises and am working doing the Muldowney protocol in order too, and do them most days, though I can't everyday. My PT has adapted some exercises so I can do everything on the floor since I have trouble being upright. The bulk of work is on me.

I haven't gotten worse. My neck hasn't gotten better, but I haven't started the neck exercises yet, still working my way up. There is some soreness in working weak muscles, but not the "bad pain" I get from overexerting. My shoulders, pelvis, and hips seem to be subluxing less. So far, it's a good experiment, though inconclusive. Wishing you the very best as you experiment.

wow thanks again! do you think you will have surgery? do you have CFS/ME? are the people who are under Henderson's care, doing the PT, post surgical patients? or are they doing this in an effort to avoid surgery?

I was looking at some videos about how to hold your correction but it is so hard for me because I lay down most of the day these days...the CFS seems to be a lot worse. so I often spend long periods with my neck too forward while on laptop.

that is great that they are adapting the exercises for laying down..that is what I need lol

it seems like the chiros say that once you hold the corrections and keep correcting, the whole body aligns and then its like...permanent sort of? I don't know

xoxo

 

[Rlman]

Muldowny's website sells a pdf version of his book for much cheaper than amazon

@Daffodil there are many 3t machines in the gta. @ScottTriGuy is getting a 3t mri with flexion extension done at st michael's i believe he wrote, thiugh they never did one before i think

 

[ScottTriGuy]

Muldowny's website sells a pdf version of his book for much cheaper than amazon

@Daffodil there are many 3t machines in the gta. @ScottTriGuy is getting a 3t mri with flexion extension done at st michael's i believe he wrote, thiugh they never did one before i think

Yes, I had to push very hard to get the proper positions, and will have to push to get the 3T before my appointment in a couple of weeks.

If my GP (who I like) was not at St Mike's, I would avoid that hospital if possible.

 

[Rlman]

Yes, I had to push very hard to get the proper positions, and will have to push to get the 3T before my appointment in a couple of weeks.

If my GP (who I like) was not at St Mike's, I would avoid that hospital if possible.

btw Henderson doesn't do rotational mri i believe, rather rotational ct. in europe they do rotational mri in the upright machine but for some reason Henderson patients dont do such from what i have read. i dont know why that is, ct is probably more radiation than mri so mri preferable probably though new research also shows it can have genotoxic effects.

 

[GypsyGirl]

wow thanks again! do you think you will have surgery? do you have CFS/ME? are the people who are under Henderson's care, doing the PT, post surgical patients? or are they doing this in an effort to avoid surgery?

I was looking at some videos about how to hold your correction but it is so hard for me because I lay down most of the day these days...the CFS seems to be a lot worse. so I often spend long periods with my neck too forward while on laptop.

that is great that they are adapting the exercises for laying down..that is what I need lol

it seems like the chiros say that once you hold the corrections and keep correcting, the whole body aligns and then its like...permanent sort of? I don't know

xoxo

I have no idea if I'm a candidate for surgery but if conservative treatment fails, I'd consider it. I have ME/CFS, though ME/CFS greatly improved from treating mold illness (a huge onset trigger) and the viral aspects.

Some local patients are post surgery (or multiple surgeries) and others are managing without surgery, and the reported results for EDS-appropriate PT are favorable within the (small) group. Doing PT to avoid, put off surgery, or as part of recovery from surgery seems standard as conservative treatment per the EDS neurosurgeons.

Improving resting posture helps since ME/CFSers have to rest so much. Crash ergonomically! 😆 (But seriously.)

There are multiple chiropractic theories; most theorize that correcting vertebrae to make room for the brain/spinal cord/nervous system to operate should create a self regulating cycle where the body can repair itself and you won't need regular chiropractic care unless there's another upset. (Ie, If you bring the nervous system to optimal function, it should be able to tell your muscles how to hold, your bones where to go, recovery from minor traumas, etc etc.)

It's a good theory, though I wonder how incomplete, as the body is a complicated ecosystem with variation and not necessarily so straightforward. It's NOT a panacea, but brainstem & spinal cord compression CAN cause terrible problems, there's just not much literature to what degree it's correctable, especially considering ligament laxity. I worked for a chiropractor a long time ago and have seen how it can put some people back into place (literally!) even where medicine has failed. So I'm interested, hopeful, with a big streak of healthy caution & skepticism for self preservation. (Aren't we all.)

 

[Daffodil]

@Rlman thanks for that info!
@GypsyGirl thank you too. you are a great source of info about this. very hard to navigate a brand new theory after so long. i had all but given up on research but this has really piqued my interest

 

[Daffodil]

hi all. about dr. B's imaging requirements..i know he wants supine 3T MRI flexion, extension, rotation?....but does he also want any imaging specifically of the craniocervical junction?
thank you

 

[Sparrowhawk]

Before I figured out that I had CCI, I spent years bedbound in a dark room. But now, my PEM and POTS are gone, my brainfog is gone, my light and sound sensitivity are gone, my neck pain and vertigo are gone, my headaches are gone, my MCAS is gone, and my breathing issues are gone.

I'm back to living my life! I'm socializing again. I'm leaving my house again on a regular basis. I'm even working out on a treadmill and pumping iron.

I've been away from this thread for a while and just catching up today. Hooray for you Jeff! So happy for you. Fantastic to hear this.

 

[hezza]

hi all. about dr. B's imaging requirements..i know he wants supine 3T MRI flexion, extension, rotation?....but does he also want any imaging specifically of the craniocervical junction?
thank you

I spoke w Dr B 2 weeks ago & he said supine MRI without contrast, no special views 1.5 Tesla or higher was sufficient. This is helpful bc many of us have had this type imaging done already. He said mine from 2014 would be fine since I was already severely ill by then. Just trying to get all the online paperwork filled out so I can send the discs.

 

[Daffodil]

I spoke w Dr B 2 weeks ago & he said supine MRI without contrast, no special views 1.5 Tesla or higher was sufficient. This is helpful bc many of us have had this type imaging done already. He said mine from 2014 would be fine since I was already severely ill by then. Just trying to get all the online paperwork filled out so I can send the discs.

I spoke w Dr B 2 weeks ago & he said supine MRI without contrast, no special views 1.5 Tesla or higher was sufficient. This is helpful bc many of us have had this type imaging done already. He said mine from 2014 would be fine since I was already severely ill by then. Just trying to get all the online paperwork filled out so I can send the discs.

thanks for that info. I have been trying for days to get someone to let me use the 3T machine. and no flexion extension views either?? wonder what has changed

 

[Rlman]

thanks for that info. I have been trying for days to get someone to let me use the 3T machine. and no flexion extension views either?? wonder what has changed

@Daffodil, maybe your upright mri would be enough for dr B?

 

[Daffodil]

@Daffodil, maybe your upright mri would be enough for dr B?

hi ron. yes i called a few months ago and they told me to just send that...but then the chiropractor said those images were garbage. totally unclear. i also thought they were awful but figured that is how they are supposed to be lol the problem is, my neck and head wouldnt stop wobbling - another indication i have problems there perhaps. anyway, i thought i would just get the supine MRI anyway and send both.