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

debored13

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Sorry if this is earlier in the thread but I couldn't find it. I
There is a lot of discussion on this earlier in the thread. Bottom line is it’s not really diagnostic the way invasive traction might be. I would just search “cervical collar” or “aspen” or “Philadelphia” to find more discussion though
 

jeff_w

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Has anyone who is interested in this theory but waiting to get their MRI, bought a cervical collar to see if it helps? Sorry if this is earlier in the thread but I couldn't find it. I don't currently have severe symptoms like Jeff or Jen did when they got their diagnosis so I'm wondering what I would be looking for in terms of relief when I put on the collar.
When I put on the cervical collar prior to my halo, it didn't help my ME symptoms at all. I didn't get enough lift from the collar alone to alleviate brainstem compression (POTS, PEM). The collar only took care of my overt CCI/AAI symptoms (dizziness, etc).

What did eliminate my ME symptoms was invasive traction from the halo, which provided enough lift to eliminate brainstem compression, and then after that, the fusion surgery.
 
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Silencio

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Has anyone who is interested in this theory but waiting to get their MRI, bought a cervical collar to see if it helps?
No.. i also don’t have the severe or life threatening symptoms that Jen described. I still have just classic ME symptoms (ha — “just”!). And I think same as @Strawberry.. seems that the collar can sometimes make things worse, or weaken muscles, from what other patients have said.
 

Wayne

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seems that the collar can sometimes make things worse, or weaken muscles, from what other patients have said.
My Physical Therapist tossed out the idea of me getting a "neck warmer", something she felt might possibly give just enough support to the neck to make a subtle difference, but not enough to create significant risks. I've still not done my homework on whether there are any that can maybe be adjusted by some kind of velcro. Will report back if I learn anything interesting.
 

jeff_w

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I think same as @Strawberry.. seems that the collar can sometimes make things worse, or weaken muscles, from what other patients have said.
Yes, definitely, long-term consistent collar use will weaken the muscles over time and is not recommended. The CCI-literate neurosurgeons will tell you this. Their recommendations are to wear the collar for only a few hours per day, to get a sense of how you feel in it.

Advice will vary a bit on a case-by-case basis, because some people are so severe that their lives are in danger without a collar. But for people whose instability has not progressed to breathing issues and other life-threatening issues, full time collar use is definitely not recommended.
 
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Silencio

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@Silencio I'm in the process of getting the MRI and they didn't tell me anything about 3D CT if I don't go to London. Can you please update this thread after you get the clarification from Gilete's office?
@talkinghead They clarified that it’s not needed if I go to Medserena Manchester. I think in their initial email that confused me, they meant that people who went to other imaging centers apart from Medserena, that then they would need the CT.
 

xrayspex

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My Physical Therapist tossed out the idea of me getting a "neck warmer", something she felt might possibly give just enough support to the neck to make a subtle difference, but not enough to create significant risks. I've still not done my homework on whether there are any that can maybe be adjusted by some kind of velcro. Will report back if I learn anything interesting.
what is a neck warmer?
 

Wayne

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what is a neck warmer?
I was going to ask my P.T. today for a little more information on that, but unfortunately, I forgot about it. My take is there are various kinds of neck wear that will keep the neck warm, and some have enough of a snug to them that they can very gently support the neck. But that's about all I know at this time. Wish I had more to offer!
 
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xrayspex

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some interesting info i found on the web (both by dr. Henderson):

1) this one lists symptoms commonly seen : https://www.ehlers-danlos.com/2015-annual-conference-files/Henderson_0.pdf (note: some graphic pics of surgery which some might find unpleasant to see but those pages can be skipped)

2)http://ihiwg.org/wp-content/uploads...-of-cranio-cervical-instability_san-diego.pdf
thanks for posting Henderson's papers, his stuff is very good. That one on CCI I could see handing to an MD, I did give my concussion physiatrist one of his papers....she was respectful to me but I could tell she doesnt want to open up that can of worms,she would have no support locally.

I am curious if you or others know what it means about "calcium influx" on page 14 of his doc on CCI?

actually if anyone ever felt energized to go thru and interpret most of that paper into laymens terms that would be helpful and any nutritional or behavioral treatment implications that come to mind with what you have learned--but I am curious about for example upreg of nmda....that sounds familiar!
 

GypsyGirl

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thanks for posting Henderson's papers, his stuff is very good. That one on CCI I could see handing to an MD, I did give my concussion physiatrist one of his papers....she was respectful to me but I could tell she doesnt want to open up that can of worms,she would have no support locally.

I am curious if you or others know what it means about "calcium influx" on page 14 of his doc on CCI?
Not sure what CSS or TXX is on page 14, but regarding calcium influx, I found this source easier to read than some:

https://www.frontiersin.org/articles/10.3389/fphar.2012.00060/full

It's about traumatic brain injury, but the mechanism seems as applicable (as CCI/AAI can be a traumatic OR non-traumatic, acute or chronic, brain injury).

"Cell death and dysfunction after traumatic brain injury (TBI) is caused by a primary phase, related to direct mechanical disruption of the brain, and a secondary phase which consists of delayed events initiated at the time of the physical insult. Arguably, the calcium ion contributes greatly to the delayed cell damage and death after TBI. A large, sustained influx of calcium into cells can initiate cell death signaling cascades, through activation of several degradative enzymes, such as proteases and endonucleases. However, a sustained level of intracellular free calcium is not necessarily lethal, but the specific route of calcium entry may couple calcium directly to cell death pathways. Other sources of calcium, such as intracellular calcium stores, can also contribute to cell damage. In addition, calcium-mediated signal transduction pathways in neurons may be perturbed following injury. These latter types of alterations may contribute to abnormal physiology in neurons that do not necessarily die after a traumatic episode. This review provides an overview of experimental evidence that has led to our current understanding of the role of calcium signaling in death and dysfunction following TBI."
 

debored13

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Perhaps off topic, but it would be good to know that ENTs and audiologists for the most part know very little about tinnitus. In fact, they cause a lot of tinnitus with some of their outdated testing procedures which are not only ineffective and unuseful, but very dangerous to someone with sensitive ears.
have you found effective treatments for tinnitus and hyperacusis. The tinnitus bugs me mainly because I used to be a musician and I love just listening to ambient sound. Do people ever reset their tinnitus ?
 

lafarfelue

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Not sure what CSS or TXX is on page 14, but regarding calcium influx, I found this source easier to read than some:

https://www.frontiersin.org/articles/10.3389/fphar.2012.00060/full

It's about traumatic brain injury, but the mechanism seems as applicable (as CCI/AAI can be a traumatic OR non-traumatic, acute or chronic, brain injury).

"Cell death and dysfunction after traumatic brain injury (TBI) is caused by a primary phase, related to direct mechanical disruption of the brain, and a secondary phase which consists of delayed events initiated at the time of the physical insult. Arguably, the calcium ion contributes greatly to the delayed cell damage and death after TBI. A large, sustained influx of calcium into cells can initiate cell death signaling cascades, through activation of several degradative enzymes, such as proteases and endonucleases. However, a sustained level of intracellular free calcium is not necessarily lethal, but the specific route of calcium entry may couple calcium directly to cell death pathways. Other sources of calcium, such as intracellular calcium stores, can also contribute to cell damage. In addition, calcium-mediated signal transduction pathways in neurons may be perturbed following injury. These latter types of alterations may contribute to abnormal physiology in neurons that do not necessarily die after a traumatic episode. This review provides an overview of experimental evidence that has led to our current understanding of the role of calcium signaling in death and dysfunction following TBI."
Yeesh, this is scary. I had 2 pretty bad concussions within the space of 1.5-2yrs, a little bit before/around the time I noticed I was declining (but before being diagnosed with ME/CFS or POTS).

Thanks for highlighting this section/information.
 

Daffodil

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When I put on the cervical collar prior to my halo, it didn't help my ME symptoms at all. I didn't get enough lift from the collar alone to alleviate brainstem compression (POTS, PEM). The collar only took care of my overt CCI/AAI symptoms (dizziness, etc).

What did eliminate my ME symptoms was invasive traction from the halo, which provided enough lift to eliminate brainstem compression, and then after that, the fusion surgery.
hi jeff. what did you mean by invasive traction? isnt halo non invasive?
thanks
 

xrayspex

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Not sure what CSS or TXX is on page 14, but regarding calcium influx, I found this source easier to read than some:

https://www.frontiersin.org/articles/10.3389/fphar.2012.00060/full

It's about traumatic brain injury, but the mechanism seems as applicable (as CCI/AAI can be a traumatic OR non-traumatic, acute or chronic, brain injury).

"Cell death and dysfunction after traumatic brain injury (TBI) is caused by a primary phase, related to direct mechanical disruption of the brain, and a secondary phase which consists of delayed events initiated at the time of the physical insult. Arguably, the calcium ion contributes greatly to the delayed cell damage and death after TBI. A large, sustained influx of calcium into cells can initiate cell death signaling cascades, through activation of several degradative enzymes, such as proteases and endonucleases. However, a sustained level of intracellular free calcium is not necessarily lethal, but the specific route of calcium entry may couple calcium directly to cell death pathways. Other sources of calcium, such as intracellular calcium stores, can also contribute to cell damage. In addition, calcium-mediated signal transduction pathways in neurons may be perturbed following injury. These latter types of alterations may contribute to abnormal physiology in neurons that do not necessarily die after a traumatic episode. This review provides an overview of experimental evidence that has led to our current understanding of the role of calcium signaling in death and dysfunction following TBI."
hey thanks so much! there is a current thread on here about limiting calcium.....you know how some folks with cfs do better on calcium channel blockers etc... Wondering if per the info from gypsygirl above one would interpret it to mean avoiding calcium a good idea at the very least and perhaps trying to reduce it in body?
 

debored13

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hey thanks so much! there is a current thread on here about limiting calcium.....you know how some folks with cfs do better on calcium channel blockers etc... Wondering if per the info from gypsygirl above one would interpret it to mean avoiding calcium a good idea at the very least and perhaps trying to reduce it in body?
I think there’s very very little correlation between dietary and intracellular calcium, which is tightly regulated via various ion channels.
 

GypsyGirl

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hey thanks so much! there is a current thread on here about limiting calcium.....you know how some folks with cfs do better on calcium channel blockers etc... Wondering if per the info from gypsygirl above one would interpret it to mean avoiding calcium a good idea at the very least and perhaps trying to reduce it in body?
Avoiding calcium in diet is not a good idea because it's only one step of a much bigger process to regulate intracellular calcium, unlikely to help, and more likely to do damage by eventual deficiency.

The negative intracellular effect isn't because of too much calcium, per se, but disrupted/altered calcium ion homeostasis. That article I posted has a diagram (figure 1) of factors of that contribute to intracellular homeostasis, and whew! https://www.frontiersin.org/files/Articles/25302/fphar-03-00060-HTML/image_m/fphar-03-00060-g001.jpg

Interesting about calcium channel blockers though - a possibly useful side effect for some.
 

xrayspex

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Avoiding calcium in diet is not a good idea because it's only one step of a much bigger process to regulate intracellular calcium, unlikely to help, and more likely to do damage by eventual deficiency.

The negative intracellular effect isn't because of too much calcium, per se, but disrupted/altered calcium ion homeostasis. That article I posted has a diagram (figure 1) of factors of that contribute to intracellular homeostasis, and whew! https://www.frontiersin.org/files/Articles/25302/fphar-03-00060-HTML/image_m/fphar-03-00060-g001.jpg

Interesting about calcium channel blockers though - a possibly useful side effect for some.
why thanks.....yea that chart is bit einstein for moi at this time of day but will recheck later ;)

here is one recent thread on calcium......
https://forums.phoenixrising.me/threads/intracellular-calcium-and-viruses.62083/