I'm also wondering why this CCI as cause of CFS and surgery to cure for CFS, is being allowed to be pushed as real and accurate and anything contrary is seen as a crime against the board?
CCI is extremely rare.
You have no symptoms (of CCI).
I have severe head and neck pain , arm and hand weakness , hands go completely dead, neuropathy , when I turn my head I get more confused , constant tinnitus, vertigo, severe headaches , breathing issues etc etc but I also have eds, I also have been very inactive , I also might have issues with the carotid arteries .
I personally wouldn't send my images and symptoms to one of these "CCI literate" neurosurgeons because fusions don't have a good track record .
I'm also curious why they all have the same dr who told them they have MCAS and pots, and what tests were used to conclude they had these disorders .
The neck symptoms are real but CCI is extremely rare and even then , the surgical outcomes might be something to reflect on.
I’m excited to find that some people with EDS do apparently exhibit PEM , or exertion intolerance in general, through searching the beyond the measurement group.
After my skull to C2 fusion, I went from being profoundly disabled to getting my life back. I have literally been going to the gym and pumping iron!
My best guess is that it could effect global metabolism a LOT. If you have brainstem compression, you likely also have vagus nerve compression and dysfunction (long implicated in ME/CFS). And the vagus nerve provides nerve energy to literally every major organ/endocrine system in our bodies, including the entire GI tract.In that sense I wonder what the effect of brainstem compression and inflammation could be on metabolism globally
That’s my guess too but I’d still like to see some papers connecting these things. Henderson and bolognese have published lots of detailed stuff that goes into the diagnostic imaging and treatments of this issue , and clinical presentation , but there’s not much there about the molecular aspect of the compression and how that influences stuff like metabolism, immunity, etc. of course mcas is even talked about as a comorbidity but not as something possibly downstream of neural injuryMy best guess is that it could effect global metabolism a LOT. If you have brainstem compression, you likely also have vagus nerve compression and dysfunction (long implicated in ME/CFS). And the vagus nerve provides nerve energy to literally every major organ/endocrine system in our bodies, including the entire GI tract.
I wrote the will before I had surgery. I wouldn't be able to do it right now. I've just been through the most difficult and painful experience of my life on the heels of a grueling 18 months. My first surgery was November 28th. I only got home two weeks ago. Many of my systemic symptoms are all over the place. I am still tapering off medications. I wake up every morning at 4 or 5am in terrible pain. I've already said that the surgeries went well and cured my apnea and peripheral neurological symptoms. I have nothing to say about the long-run outcomes of these surgeries on my systemic symptoms, positive or negative, because they haven't happened yet. I will update folks further when I am ready. It would be deeply irresponsible to write about my current health status with respect to ME and POTS: it's far too early and frankly, I don't think I have the cognitive ability at present to take the care I would need to take.
If anyone is actually planning on having surgery, I'm happy to chat re: anesthesia, medication, post-surgical care and recovery. DM me here.
EDIT: Hello everyone. It's nice to be able to be here again. This is my first time even lurking on PR since December. I'm sorry that my first post is a defensive one. The emotions this topic evokes have surprised even me. I cannot speak for Jeff but I am definitely not promoting surgery to anyone. I'm completely aware of the responsibility I have given the number of patients I can reach. I do think it was important to present my diagnosis publicly as a) I could have died and b) I did end up disappearing for two months. The speculation would have been endless had I not told people what was going on. I did it with as much care and as many caveats as I possibly could. The "hype" is that some people saw their own symptoms and experiences in mine and Jeff's stories. That was inevitable as there is no way we are alone in our experience. And I do think diagnosis is important: I wish I knew I had CCI before my thyroidectomy. By sharing my story, maybe others having totally unrelated surgeries will now take care to protect their necks.
I do think this is one of the most important area of research receiving zero research attention. (Not that the other important areas of research are getting nearly enough attention!)
I never knew I was hypermobile until I was examined by a ME/CFS specialist (two have DX'd). Now, hypermobility seems obvious...lot's of signs throughout my life that I just thought meant I was extra flexible. My sister is this way too, so I didn't realize it was a "thing." I would love to get a straight answer on an EDS DX. I have been DX'd with CCI by Dr. Bolognese and my PT concurs with "loose ligaments" and seeing signs of CCI in my extension MRI. Right now, I'm doing the best I've been in three years with manual traction therapy, but I'm on lots of prescription interventions too. It's hard to tell what has made the ultimate difference, or just a combination of it all. I'm not normal (i.e. recovered), but I've had major improvements that have lasted for weeks. I do believe there is major overlap in the co-morbid DX's. Maybe it's all just the same thing that presents differently in different people. Or, a susceptibility for ME that occurs in EDS. These overlaps have been observed clinically for decades, only now are some researchers starting to notice and get curious.I’m excited to find that some people with EDS do apparently exhibit PEM , or exertion intolerance in general, through searching the beyond the measurement group. Not saying it’s the same diseases , but PEM was in my mind the missing thing in @jeff_w ’s mechanical paradigm, because I wasn’t sure why some people with even a large degree of instability didn’t get diagnosed w me/cfs and/or have exertion intolerance. But it seems possible that a decent portion of eds patients DO have exertion intolerance. I wonder what would it look like if eds or cci patients took a 2-day invasive cpet with systroms lab
I know that @jeff_w spoke of having some mold sensitivity along with many sensitivities and allergies that improved after surgery. Jen also has discussed the possibility of mold sensitivity being related to mast cells, although many people think mold illness is more far reaching and complicated than simply mast cells/allergy, because of the various effects of mycotoxins that go beyond allergic-like effects. However many people with mold illness have benefited from mast cell stabilizers.