• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

rainbowbluebells

Senior Member
Messages
248
Ah, I see the challenge now. A rotational CT would be much easier on your body, for sure.

To get a doctor to order it for me, I gathered all the info I could about how to actually do it, including one of the EDS neurosurgeons' rotational CT form letter so my doc would know exactly what to ask the radiologists. Then I gave her the medical papers and a short summary explaining why it's a medical necessity. And some examples of what it looked like in axial and 3d views for the radiologist to reference. Would you like me to send that to you?

I'm going thru billing/medical coding classes and could probably find the codes needed to order it too, since you're already dx-ed with CCI. The only thing your doc would have to do is check my notes and order it. The info might be enough to prove medical necessity to your insurance too.

Hi @GypsyGirl please would it be possible for you to send me all that info too? I need to have a CT scan as Dr Gilete won’t accept just a supine MRI scan. However every doctor I’ve asked here in the UK has no idea about this, and even if I do get someone to write flexion extension on the instructions, I doubt they would do the specific imaging I need or know what exactly to do or why I need to do it!
 

GypsyGirl

Senior Member
Messages
165
Location
North Carolina
Hi @GypsyGirl please would it be possible for you to send me all that info too? I need to have a CT scan as Dr Gilete won’t accept just a supine MRI scan. However every doctor I’ve asked here in the UK has no idea about this, and even if I do get someone to write flexion extension on the instructions, I doubt they would do the specific imaging I need or know what exactly to do or why I need to do it!

Sure! PM-ed info.
 

Daffodil

Senior Member
Messages
5,873
@JenB thank you, you have made my day.

you can answer this later but i was wondering if you had any thoughts about why this happened after your "flu". I wonder if EBV or some other virus can actually attack ligaments in the neck. I had a lot of neck issues after my infection but they did not feel like bone problems...more like cramping..

what does dr. H think of why this happens after the flu sometimes?

oh also do you have EDS? a foot doctor once told me i had hypermobility but thats it

lol ok sorry i have too many questions

xo
 

Daffodil

Senior Member
Messages
5,873
@StarChild56 @mattie @jeff_w @JenB i notice most people are having 1 or 2 level fusions. i wonder if you all have any issues showing up lower down in the cervical spine at all...like some disc herniations or something. or...is your whole neck totally OK except for the upper levels?
thanks:)
 
Messages
13
Hi everyone,

First time poster here from Toronto, Canada. I am new to this world after a strange downhill spiral following a very unusual adverse reaction to b6 vitamin supplements, which left me with pretty terrible peripheral neuralgia and an intense burning sensation at the base of my skull. Since then, I’ve experienced more illness (strep, flu, HFM disease) in 6 months than I have in my previous 31 years. Along the way, I’ve collected symptoms such as a stiff neck that simultaneously felt/ feels like is no longer able to support my head, a feeling of increased laxity around my sacrum/pelvis (I can sometimes feel it sublexing), significant sleep disturbances, lack of stamina, tachycardia, loss of ability to read more than a paragraph at a time, pressure headaches, short term memory loss, confusion, crackling sensations in neck, sensitivity to sound/light/smell and other neurological symptoms like muscle spasms and fasciculations. I do not have “fatigue” in the typical sense. Actually, I’m more much more wound up and seemingly incapable of resting. MRI came back clear according to the radiologist and Neuro testing ruled out neurodegenerative conditions.

I do not have any diagnoses yet; the wait time for CFS/ME specialists in Toronto is excruciatingly long. That said, I now suspect that for me, my CFS/ME symptoms may in fact be rooted in a CCI issue. No tendency for hyper mobility previously, so a hEDS diagnosis doesn’t feel like it would fit. Like many of you, what I’m curious about is how someone with no previous hyper mobility issues might develop them. (Though it feels as though mine are limited to my neck and pelvis.)

I just wanted to extend my gratitude to everyone on this forum. I am in absolute awe of all of you. If it weren’t for your exhaustive research and willingness to share your experiences, I would have been left completely, painfully, and frustratingly in the dark - undoubtedly, much like many of you were when you first became ill. It is only because of you that I may have some small clue as to what might be going on, allowing me to avoid doing anything that may make me worse (overexertion, moving my neck around too much) and pursuing avenues that even a visit to a CFS specialist may not help with. (This week, I’ll be making a trip to Buffalo to pay out of pocked for a 3T supine MRI, which is unavailable in Ontario.) So much love and gratitude to all of you. Thank you in particular to @jeff_w @JenB @mattie for what you’ve shared so far regarding your surgical experiences.
 

Daffodil

Senior Member
Messages
5,873
@Lesm i am in toronto too. welcome to the forum. there actually is a way to get a 3T MRI here but i think you have to wait over a year.
 
Messages
13
@Lesm i am in toronto too. welcome to the forum. there actually is a way to get a 3T MRI here but i think you have to wait over a year.

Appreciate the info! I’m fortunate enough to be able to afford the $600, so I think I’m going to give it a shot in Buffalo and send the results off to Dr. B, given that - from what I understand based on this thread - he’s the only one that currently accepts (3T) supine imagery. Anyone know if Dr. Henderson will even entertain these types of scans to review for a fee?
 

frozenborderline

Senior Member
Messages
4,405
Anyone know if Dr. Henderson will even entertain these types of scans to review for a fee?
Doctor Henderson reviews imaging for no fee if he takes your insurance, but not remotely, only in person, I believe. And he needs upright mri w flexion and extension plus rotational ct.
Appreciate the info! I’m fortunate enough to be able to afford the $600, so I think I’m going to give it a shot in Buffalo and send the results off to Dr. B, given that - from what I understand based on this thread - he’s the only one that currently accepts (3T) supine imagery
Dr B also will accept upright imaging even tho he prefers supine, so if you want to be able to send the same set of images to multiple specialists, I’d go with upright mri w flex ex and rotation, that way you could at the very least send it to gilete and bolognese, who both do remote consults. There’s an upright mri place in Albany that would Be the same cost as the supine mri you’re talking about.
 
Messages
13
Buffalo NY in the US? Or in Canada somehwre?

Awesome - thank you. Buffalo NY. It’s actually a pretty quick drive from Toronto and allows me to get a 3T MRI done within a week at a private clinic. (I’m a big supporter of Canada’s universal healthcare system, however the wait times and sometimes inferior imaging systems leave something to be desired.)
 

frozenborderline

Senior Member
Messages
4,405
Capital region upright mri is what I used for my upright w flexion and extension. One pitfall is the ordering form for physicians has no box to check specifically for rotation although they do do it, so you have to write it in on the form. So I had an upright mri with flexion and extension and now I’m going back For rotation at additional cost unfortunately. Other than that it was fine.
 
Messages
13
Capital region upright mri is what I used for my upright w flexion and extension. One pitfall is the ordering form for physicians has no box to check specifically for rotation although they do do it, so you have to write it in on the form. So I had an upright mri with flexion and extension and now I’m going back For rotation at additional cost unfortunately. Other than that it was fine.

Super helpful! Thank you!
 

Daffodil

Senior Member
Messages
5,873
so I have been reading some stuff and it appears that I might have to abandon the ides of surgery. If we take out a loan and I get surgery done, there a large probability I will need revisions or more surgery on adjacent joints, which there is no way I will be able to afford. One person needed additional surgery in as little as 6 weeks!

I might have to just hope that prolotherapy might help....I just don't know.

Someone here said prolotherapy did not help them but I ran into 2 people in a facebook group that said it helped them a lot. It appears it might not have the best track record for severe cases...but it is my only option by the looks of it...

If anyone has tried it, I would appreciate any feedback
Thanks:)
 

Strawberry

Senior Member
Messages
2,079
Location
Seattle, WA USA
Someone here said prolotherapy did not help them

I believe @Learner1 told me a while back that she had prolotherapy (and a few other things) that helped her immensely. Maybe she can chime in for you? I know it is something I do intend to look into, but I have not yet had time to get the MRI. (all I have ever had on my neck is an exray, so I want the MRI before I make any treatment decisions as all "treatments" have failed in the past based on xray)
 

Murph

:)
Messages
1,793
so I have been reading some stuff and it appears that I might have to abandon the ides of surgery. If we take out a loan and I get surgery done, there a large probability I will need revisions or more surgery on adjacent joints, which there is no way I will be able to afford. One person needed additional surgery in as little as 6 weeks!

I might have to just hope that prolotherapy might help....I just don't know.

Someone here said prolotherapy did not help them but I ran into 2 people in a facebook group that said it helped them a lot. It appears it might not have the best track record for severe cases...but it is my only option by the looks of it...

If anyone has tried it, I would appreciate any feedback
Thanks:)

I'm sorry the cost of surgery is out of reach but I think it's very smart to choose this lower-risk procedure first before proceeding to a series of surgeries
 

Daffodil

Senior Member
Messages
5,873
@Strawberry thank you for that info:)
@Murph yes who knows maybe it will be a blessing in disguise. scared to hope though

i've had a lot of imaging so i guess i may as well look into going to colorado sooner rather than later. i assume most people go to the regenexx people. the woman i met on FB didnt even get stem cells..she got the cheaper PRP locally and was still very pleased with the results. and hers didnt even sound like a very mild case either. she also swore by osteopathic manipulations.
 

rainbowbluebells

Senior Member
Messages
248
Hi,
I have good news! Well, I think it’s good news. I sent in my supine 3T MRI scan to Dr B. However I haven’t been able to try traction since I live in the U.K. (have written a post explaining a few posts back).

Your MRI imaging is quite normal in appearance.

Try cervical traction with your local physical therapist.

If you obtain dramatically positive results with the traction, then email me back about your feedback, and we will select you for a visit or a videoconference.

If the traction does not provide dramatically positive results, then proceeding with the next steps is not indicated.”

My question is, if the MRI looks normal, why would I try traction? Its made me confused and panicky :/ (i have severe anxiety and ocd so.. yeah).

Edit: but I’m so happy my MRI results are normal. As I’ve been very mentally unwell from this as well as very physically unwell (I have severe M.E) from the stress. Let alone the fact I can’t travel to America now or the fact I don’t have any money for surgery either!! I’ve got a lot of other issues anyway which I want to address. Copied from another thread where I posted: I have severe M.E btw, and I don’t have EDS. I don’t have normal PoTS, I have the hyperadregenic type if I have it. No hypermobility except the absolute slightest in my elbows which may not even be enough to say elbow hypermobility. I was however born with nervous system “fight or flight problems”, autism which requires a lot of daily reassurance (which wasn’t diagnosed until I was 27) and severe sensory processing difficulties which I never had help for. Just Incase anyone’s interested. :) )
 
Last edited: