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

[xrayspex]

thanks. i looked up that device. jeff says it did not work for him, yet the surgery did.... have you tried it out yet? if so. how was it?

so...i was thinking....now lets say we have inflammation from an unknown source (According to KDM's team, it seems to be eminating from the plasmacytoid dendritic cells in the gut) and this inflammation is causing the swelling in the brain stem, which, in turn, is causing at least some of our symptoms. now, if we have surgery to create more space for the brain stem, it will decrease intercranial pressure, pressure on the spinal cord/brain stem, etc....and eliminate some of the CFS symptoms. ...but the inflammation will still be there....so we havent taken care of the original problem, right?

this is all so confusing. the tissue study clearly showed the inflammation coming from the gut....how can cci surgery fix this??

thats what Dr Cheney speculated about my cervical stenosis and CFS....that inflammation made neck issues worse and chiari in chiari folks worse (this was in 2008)

 

[Daffodil]

i was thinking....the last several months, my voice has become hoarse...sometimes very hoarse. i think it is probably peri menopause since i am almost 48 but...hoarseness is also a symptom of CCI. i dont have trouble swallowing though and the voice gets back to normal in humid environments....so maybe the dryness is just menopausal....

i dont know...i cant wrap my head around the idea of CCI causing so many downstream affects such as active infections, inflammation throughout the body, such extreme fatigue, etc. and not everyone benefits from the surgery either.

just something else that makes no sense

does anyone have this and no headaches? it seems i should be having headaches if i had this

 

[Rlman]

another question for those who know: would it be possible to see if I have this problem by using a neck traction device before going to all the trouble of getting an MRI and trying for surgery?

can I rent a halo and use it on myself? or some other contraption? I saw one that hangs from a doorknob.

i wonder if this might be another piece of the puzzle for me. i have to admit it seems like a longshot but even my doctor is stumped regarding my severe brain fog.

thanks a lot for any suggestions

on the btm fb group a person said that the doorknob contraction and hard collar can be a test but the risk is that the traction from them can stretch ligaments and turn a nonsurgical case of CCI a surgical case, or even possibly cause CCI in a person who didnt have it. but for people who are in really bad shape then its a temporary help till surgery, ppl on the btm group use them, though they may get worse if they take it off, im not sure. I dont know if the opinion of the person on BTM is fully accurate, but just want to share just in case.

btw upright mris are even cheaper than $600 at the place that dr henderson in maryland does it for his patients, but he also orders a rotational ct scan in addition to an upright mri so the total cost is over 600 i think.

 

[Daffodil]

@Rlman that is very helpful info, thank you. looks like flights to maryland are cheaper than where i was going to go!

i did have some worries about the doorknob contraption myself....

i saw a link to a video on youtube where dr. henderson talks about headaches but i dont really get headaches :-/

one more interesting thing is, many years ago, in one of my MRI's of the head, a radiologist caught sinusitis. again, i just figured the tissues in my sinuses were inflammted from the disease - like everything is inflammed....but the doctor i was seeing at the time wanted me to look into it. i ended up seeing a prominent ENT doctor in manhattan who said that he felt the problem was from "trigger points in my neck". i had told him about the neck issues i was having back then.

do you see dr. henderson? do you have CCI?

do you think the rotational CT is necessary? i told my doctor to ask for neutral flexion extension and rotation for the MRI.

oh...do you know the name of the place that does the imaging in maryland?

i am so glad you messaged me!
xoox

 

[Daffodil]

@Rlman sorry forgot to ask....is the CT with contrast or without contrast?

is this an upright CT??

i was reading a forum where someone said this is the only test Henderson ordered for her...

thanks!

 

[Daffodil]

so there is a group for people who are interested in this or have had the surgery right? someone mentioned btm fb group? can I join this group? anyone have a link or something ?

someone mentioned that Yolanda foster had some kind of surgery and is better now.....does anyone know if it was neck related?

thank you!

 

[rel8ted]

so there is a group for people who are interested in this or have had the surgery right? someone mentioned btm fb group? can I join this group? anyone have a link or something ?

You have to ask to join. @jeff_w said they were falling behind approving people. I am still waiting....

 

[Daffodil]

You have to ask to join. @jeff_w said they were falling behind approving people. I am still waiting....

thank you!

 

[Rlman]

the rotational ct is used to rule out Atlanto Axial Instability.

 

[Malea]

someone mentioned that Yolanda foster had some kind of surgery and is better now.....does anyone know if it was neck related?

Google says it was breast implant removal

 

[Daffodil]

Google says it was breast implant removal

oh. that was a long time ago. i thought she had another one....

 

[mattie]

Upright Mri on a bad day with POTS through the roof is no fun at all. One 35 minutes session and after a short break another 50 minutes.

CCI detected by radiologist.

He told me to try manual therapy / osteopathy first,
and no way jump into cci surgery straight away.

Sending scans to Barcelona today.
Will post updates in this thread.

 

[bjl218]

Very interesting @Wayne. Do you use DMSO alone or combined with something else?

This is the primary reason I regularly apply a DMSO mixture to my neck area. All indications are that it reduces inflammation in that area, and surrounding areas as well. This mixture keeps my neck pain and stiffness at bay, and has almost completely eliminated my many years' experience with feeling an uncomfortable pressure in my brain/head.

 

[Binkie4]

Upright Mri on a bad day with POTS through the roof is no fun at all. One 35 minutes session and after a short break another 50 minutes.

CCI detected by radiologist!
@jeff_w

He told me to try manual therapy / osteopathy first,
and no way jump into cci surgery straight away.

Sending scans to Barcelona today.
Will post updates in this thread.

@mattie
Glad you are making progress with a diagnosis.
Can I ask if you have an Ehlers Danlos diagnosis, and how car travel is progressing? PM me if you prefer.

 

[mattie]

@Binkie4
No Ehlers Danlos diagnosis, no hypermobility.
ME and POTS.
Car travel is extremely difficult for me. This trip today will surely crash me. Not even driving myself.
Why are you asking about car travel?

 

[Binkie4]

@mattie
I remembered you posting about your real difficulty with car travel, either here or on the other board. I have had some difficulty for a while but had a real deterioration last summer after a 270 mile car trip ( over 2 days), such that I was dizzy and lightheaded for the first 2 weeks of a 3 week holiday. I was sofa bound. Could not face car journey so flew home leaving husband to drive car back.
Beginning to plan for the same journey this summer but I will have to fly.
Am wondering about any possible linkage between CCI and car travel intolerance. Pure speculation on my part. I have hypermobility.

 

[mattie]

I remembered you posting about your real difficulty with car travel, either here or on the other board. I have had some difficulty for a while but had a real deterioration last summer after a 270 mile car trip ( over 2 days), such that I was dizzy and lightheaded for the first 2 weeks of a 3 week holiday. I was sofa bound.

Wow you have a good memory. I have had the same experiences. Maybe it's all the little bumps and dents in the road that worsen whatever is wrong in CCI area. Lots of little shakes and movements of head and neck...
Last trip to Germany (360km) left me completely bedbound for 2 weeks.
For MRI today I did 2x200 KM (2x 5 hours because of countless traffic jams) in two days including 2 very bad nights of sleep and of course the MRI itself. Chances of crashing hard in the next day(s) are very high. But it was worth it.

 

[Binkie4]

@mattie
Hope your reaction to the test and the travel is less than expected. Good wishes for future progress.

 

[Wayne]

Do you use DMSO alone or combined with something else?

I first dilute 100% DMSO: -- 2 parts DMSO to 1 part purified water (creates a warming sensation of the mixture for a few minutes). I then mix this diluted DMSO mixture with magnesium oil (1:1). I think both the DMSO and magnesium oil are really good for all kinds of muscle aches and pains, and the inflammation that generally acompanies those pains. I believe that same combo has been responsible for some improvements in my POTS / OI, probably mostly from relieving inflammation in my neck,and my cranial nerves as well.

 

[Gingergrrl]

CCI detected by radiologist! @jeff_w

He told me to try manual therapy / osteopathy first, and no way jump into cci surgery straight away. Sending scans to Barcelona today. Will post updates in this thread.

Thank you for the update @mattie and best wishes with sending your scans to Barcelona. Please keep us posted.