Will your medical insurance cover this surgery? Curious
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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.
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But we are thinking about doing the Trendelenburg-Position, Traction Test and buying a neck brace/neck stretching device. What would you suggest to do first?
Has the Traction Test to be done by an expert (which one?) or can I do it? Which neck device did you use first to get out of the severe condition?
were you able to determine what the cause of your cervical instability was? Was it some sort of connective tissue degeneration?
Also despite your fusion have those processes of degeneration stopped yet?
I ask because since my onset I have been experiencing almost a type muscle/tissue wasting in my head and neck region it seems. Lots of weakness in all those supportive structures when I had super sound stability and structural integrity before onset.
It would be great if some sort of pathological process were identified and treated rather than what seems to be the downstream structural issue months/years later.
I'm asking this from the Point of view that maybe chiari isn't necessarily a cause but a symptom along the trajectory of whatever triggers me/cfs
I went to my GP with this information and he said he couldn't and I should write to my CFS infectious disease specialist. I wrote to them and included a bunch of reference to back up this CCI/IIH angle but they said they don't think its that.
I then sent an email to my POTS specialist (neurology) and met with a different doctors at my appointment in London 2 weeks ago. I explained to her the possibility of this CCI and how easy the test would be. She said it's pointless as I already have a diagnosis of POTS.
I explained to her that my 3 diagnosis (POTS, CFS, Gastroparesis) are all idiopathic yet CCI isn't and has treatments that work. She said that a whole group of specialist looked at my Tilt Table Test results and nothing suggested spinal involvement.
I told her that you couldn't determine that from those tests and it needed to be an upright MRI with flexion/extension viewed by specialists in this disease to make the diagnosis and she brushed it off saying again that the specialist team saw nothing to indicate spinal problems.
Have to say I'm pretty disappointed. I thought I might be able to convince 1 of the 3 especially as what I am asking for isn't going to bankrupt the NHS.
I find, however, that almost all of my suggestions get blow off by doctors so I sort of expected it.
In terms of the neck / structural abnormalities connection, have you ever come across in any reading in regards to whiplash and connection to CCI/Chiari/etc?
I only ask because I was involved in a car accident that induced severe whiplash days before I experienced my POTS and PEM.
Every test up until this point with my spine / brain hasn't revealed any abnormalities (MRI's and CT) but I've continued to wonder.
The emphasis here, IMO, is on consistently. Meaning that other specialists might not be able to identify the more "hidden" cases.
Upright mri's are not only pictures that are taken while the patients are sitting (instead of lying). They are also taken while the patients are moving their heads/necks into different positions.
So that means there are a lot of pictures taken, all have to be looked at very carefully, measuring a lot of different angles, etc. As I said above, even fractures tend to be overlooked quite commonly [in still pictures!].
So I really appreciate Jeff's recommendations of the most reliable specialists to diagnose/outrule Chiari and CCI.
I don't know if Jeff mentioned it anywhere. I do not know if this is even the case in most people with Chiari and/or CCI. It is something that I would expect, as I said above.
Imagine you'd have a prolapsed lumbar disc. It would hurt* pretty much all the time, but would inhibit you from standing upright, while would be better lying on your back with your legs elevated on a stool etc. Now imagine you'd have to cough or sneeze... [* there might be other symptoms as well, just focusing on pain here]
So I'd say symptoms would be dependent on what structure/s (brain? nerve roots? spinal cord?) being compressed at what length of time (permanently? intermittendly?). And also bearing in mind that compression would additionally lead to inflammation of these structures, leading to further and/or increasing current symptoms.
P.S. English is not my first language, so I'd like to apologize for any unprecise/wrong/funny wording.
And Hi @Wayne
Thanks for the link, interesting indeed!
Yesterday, I ordered a soft cervical collar, just to find out if certain symptoms might be related to my neck. I've had 4 whiplash injuries in the past and my neck is kind of my 'weak spot'.