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

Rlman

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@jeff_w I have been offered a trial of a halo brace in order to help determine if surgery will benefit me. Do you know, or was it discussed with you at the time, if having your head pulled up invasively could potentially cause or worsen vertical instability if this turns out not to have been your issue to begin with (ie if the halo didn't improve symptoms)?
on page 87 (i think) of this thread there are posts saying there is risk of making the instability worse (due to stretching the ligaments, especially a problem for people with EDS i think?)
 
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Would a chiari malformation show up on a standard brain MRI?
Or do they need to look closer to rule this out?
They need a Cine MRI or "MRI showing flow of celebrospinal fluid". Because Chiari can be non-pathological as it is my case. My fluid ariubd brain does not get blocked anywhere and my Chiari is innocent. The doctor from Harvard said so and it was crystal clear in the MRI. The Cine MRI is a video of your brain...
 

Rlman

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does manual cervical traction making a person feel better mean that the issue is CCI or are there other medical conditions that would feel better upon getting cervical traction?

btw, i remember a lady on BTM wrote she didn't feel better with traction but the surgery still helped her with some symptoms.
 

Daffodil

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*****omg******* someone just told me that dr. B recommends dr. Atul Goel in India for Australian patients to go to. Does anyone know a way to verify this??

this could be a game changer for many of us...it would be 1/2 the price of Spain there..or less maybe!

I mean..if one gets desperate enough.....
 
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PEM seems to be a clear differentiator
This is what I keep coming back to myself, but I wondered about this. I have several friends that believe that I am sick but that the doctors just haven't found the reason yet. But I fall squarely into the diagnostic criteria for ME, in part because of the PEM. So the fact is, no other illness causes PEM? Is that so?

Hope this isn't hijacking the thread, sorry.
 

Daffodil

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This is what I keep coming back to myself, but I wondered about this. I have several friends that believe that I am sick but that the doctors just haven't found the reason yet. But I fall squarely into the diagnostic criteria for ME, in part because of the PEM. So the fact is, no other illness causes PEM? Is that so?

Hope this isn't hijacking the thread, sorry.
i think there are other illnesses.....adrenal issues and others....
 
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This is what I keep coming back to myself, but I wondered about this. I have several friends that believe that I am sick but that the doctors just haven't found the reason yet. But I fall squarely into the diagnostic criteria for ME, in part because of the PEM. So the fact is, no other illness causes PEM? Is that so?

Hope this isn't hijacking the thread, sorry.
There are many auto immune illnesses that speak of payback: lupus, MS, etc. EDS patients describe a PEM without using the term. But how many of these patients will continue to get worse & worse & worse until they are bedridden if they repeatedly put themselves in payback like what happens w PWME? EDSers are encouraged to exercise even if they get payback bc it helps them get better. The opposite happens with us. That is where the the difference lies IMHO.

Keep in mind tho, that Jeff, Jen, & Julia all experienced remission of classic ME-style PEM following their fusion surgeries.
 
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*****omg******* someone just told me that dr. B recommends dr. Atul Goel in India for Australian patients to go to. Does anyone know a way to verify this??

this could be a game changer for many of us...it would be 1/2 the price of Spain there..or less maybe!

I mean..if one gets desperate enough.....
As someone from India with a suspicion of CCI, this interests me greatly.
 
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Currently my suspicion of CCI is nothing more than a hunch. Dr. B recommended cervical traction as the first diagnostic step. If only I get dramatic results with that am I supposed to proceed to other steps.

But IIRC at least one person on this forum said that traction made them worse. I read somewhere that traction can make you worse if you have hidden tethered cord syndrome.

This all makes me really concerned. How safe is it to do traction with a PT without previously having looked for contraindications or attempted any other form of diagnosis?
 
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Currently my suspicion of CCI is nothing more than a hunch. Dr. B recommended cervical traction as the first diagnostic step. If only I get dramatic results with that am I supposed to proceed to other steps.

But IIRC at least one person on this forum said that traction made them worse. I read somewhere that traction can make you worse if you have hidden tethered cord syndrome.

This all makes me really concerned. How safe is it to do traction with a PT without previously having looked for contraindications or attempted any other form of diagnosis?
I don’t think Dr B would recommend cervical traction if it can make you worse if you have occult tethered cord. He is well aware that the same patients who are likely to have CCI would likewise have tethered cord & he treats both conditions.

But the importance of finding a good physical therapist specializing in the cervical spine, (ideally EDS-literate) someone who knows what they are doing, cannot be over emphasized. I have read of some patients feeling worse from going rogue & pulling on their own neck or having a friend pull “as hard as they could” on their neck- this is not be confused for manual cervical traction performed by a competent PT.

Even when done properly & even when there is a positive reaction it can sometimes lead to a rebound effect, this is not the same as making them worse. This effect is temporary.
 
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bread.

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@jeff_w

hi jeff,

you mentioned eds and cci groups on fb, could you point me there with links?

so far the only post surgery cci stories I have found (patients with comorbid eds or eds without me/cfs but would fit the diagnosis of it) are very bleak.

(at least 7 blogs, all negative outcomes or had to fuse more and more vertebrae with time)

I am aware of Karen, Jen and you who had a very good outcome.


Thank you!
 

Daffodil

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@jeff_w

hi jeff,

you mentioned eds and cci groups on fb, could you point me there with links?

so far the only post surgery cci stories I have found (patients with comorbid eds or eds without me/cfs but would fit the diagnosis of it) are very bleak.

(at least 7 blogs, all negative outcomes or had to fuse more and more vertebrae with time)

I am aware of Karen, Jen and you who had a very good outcome.


Thank you!
search for CCI, CCJ, ME/CFS and you will find the groups. there is one just for CCJ patients who are pursuing stem cells, one for CCJ + EDS, one for CCJ + CFS etc
 
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Hope this is appropriate question for this thread. Had ME/CFS many years. Main symptoms are nausea, bloatedness, tiredness migraines. I have a neck problem too when I turn my head. Crunching and cracking type sound. Saw a Dr. Weir who did certain movements with my head, e.g. turning my head and also lifting head upwards. And asking me at each stage if I felt any different. Can't say I noticed any change so nothing was then said about a scan. Does anyone think I should have still requested one? I am in UK. Thanks in advance.
 

Daffodil

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Hope this is appropriate question for this thread. Had ME/CFS many years. Main symptoms are nausea, bloatedness, tiredness migraines. I have a neck problem too when I turn my head. Crunching and cracking type sound. Saw a Dr. Weir who did certain movements with my head, e.g. turning my head and also lifting head upwards. And asking me at each stage if I felt any different. Can't say I noticed any change so nothing was then said about a scan. Does anyone think I should have still requested one? I am in UK. Thanks in advance.
yes I think everyone should explore this possibility thoroughly If possible
 
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I don’t think Dr B would recommend cervical traction if it can make you worse if you have occult tethered cord. He is well aware that the same patients who are likely to have CCI would likewise have tethered cord & he treats both conditions.

But the importance of finding a good physical therapist specializing in the cervical spine, (ideally EDS-literate) someone who knows what they are doing, cannot be over emphasized. I have read of some patients feeling worse from going rogue & pulling on their own neck or having a friend pull “as hard as they could” on their neck- this is not be confused for manual cervical traction performed by a competent PT.

Even when done properly & even when there is a positive reaction it can sometimes lead to a rebound effect, this is not the same as making them worse. This effect is temporary.
Well Dr B did recommend over email to try cervical traction as the first diagnostic step without doing any scans first. It does seem relatively safe but I'm still doubtful.

I don't really know whether I have tethered cord or CCI or anything. So I'm really not sure what the first step should be.