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Cervical spine stenosis as a cause of severe ME/CFS and orthostatic intolerance symptoms

Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Nov 11, 2016.

  1. anciendaze

    anciendaze Senior Member

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    Note that I said "a central problem", not "the central problem". Not all ME/CFS patients put OI high up on the list, though some, including myself, do. In these patients it was called "refractory", which is enough to merit special attention.

    Having read the Fukuda criteria for CFS, I don't think these mean much. In particular, they don't mention orthostatic intolerance at all, and PEM is not required:
    It is even possible that CSS would be considered an exclusionary condition.
     
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  2. melihtas

    melihtas Senior Member

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    English is not my first language but Merriam-Webster says: "refractory= resistant to treatment or cure". I think it is the case for every ME/CFS patient. I haven't heard anyone successfully treated their OI.

    Yes, I think that is why the author felt the need to add "and orthostatic intolerance" after ME/CFS symptoms because it wasn't included in Fukuda criteria rather than because it was a central problem.


    Or, maybe a subgroup of ME/CFS is actually CSS.

    Bowel movement and bladder problems are some of the symptoms of CSS which most of the ME/CFS patients including myself have been suffering from. It may have been causing a lot of other autonomic nervous system problems too.
     
  3. anciendaze

    anciendaze Senior Member

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    The point I was making is that the authors felt the need to use this word, indicating that treatment had been tried and failed.

    Now, I'll contrast this with psychiatric treatment where it is not uncommon to find that the patient suffered from orthostatic hypotension, but a change of medication at least made the problem more tolerable. Orthostatic hypotension in response to antidepressants is very widespread. To a surprising extent, most psychiatrists never ask if the patient suffered orthostatic intolerance prior to treatment.
    ----
    On a separate note, I'll share a suspicion I'm developing that strange neurological problems in response to inflammation due to infectious disease are associated with preexisting conditions like a tendency toward spinal stenosis. Inflammation makes narrow passages of nerves through bone more of a problem. A parallel problem shows up in blood flow, and many problems can start with localized ischemia.

    Damage to nerves from problems largely unrelated to local infectious agents look like good hunting grounds for sterile cell death and consequent autoimmune response, as the immune system casts about for a foreign culprit which is not apparent.
     
  4. lansbergen

    lansbergen Senior Member

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    Treat the cause instead of the effect.
     
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  5. anciendaze

    anciendaze Senior Member

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    First, you have to find that cause. We are still at the stage of investigation where we accumulate clues, and this could be a good one.
     
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  6. lansbergen

    lansbergen Senior Member

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    yes
     
  7. dreampop

    dreampop Senior Member

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    I don't see this as a misdiagnosis at all, and I'm sure Rowe doesn't either. These people had acute (probably viral onset) and the most classical CFS symptoms. Possibly a subset, but I think its getting more at the root of CFS and where it is in the body that these symptoms come from - the spinal cord and the nerve cords. Reminds me of another cases report from Rowe, where he had a patient with acute viral onset and she recovered by having the Chiari fixed. The interesting thing is she had the Chiari BEFORE the CFS, like these patients had the stenosis before the CFS, but removing them led to recoveries. What researchers are looking at the spinal cord? None to my knowledge. I'd love to see some spinal cadavers.

    CFS patients respond less to placebo effects than in any other disease, right? Seems to me a structural problem in the spine wouldn't respond very well to placebo compared to say, MS or Parkinsons. The body can't fix those things itself. I'd love to hear others explanations of the low placebo finding in CFS. Of course, expensive surgeries have the highest placebo response (its thought, its not well researched) so maybe that's what Rowe encountered. I'd love for people to look at the spine, the spinal cord, the nerves and the brain stem more.
     
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  8. sue la-la

    sue la-la

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    this is me - narrow cervical spine (9-12mm) with osteoarthritis, and bony spurs jutting into the spinal canal - long term, and often quite painful - with loss of sensation in my legs and arms. i also meet every single criteria on the Canadian Consensus Criteria (diagnosed by an ME specialist), and am moderate/severely ill.

    thanks for the info & discussion - i'll be investigating the osteopathic and other suggestions (but not the surgery) - and will try to find a postural method to reduce the compression of the nerves / improve circulation.

    i'm curious about the trigger / causation here. perhaps there was a long-term infection of the spinal bones and/or the local nerves & tissues, that caused the osteoarthritis, AND triggered the ME/CFS and neuro-immune-mitochondrial dysfunction ... (as per @nandixon cytokine comments)
     
  9. xrayspex

    xrayspex Senior Member

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    We have written about this in the past on here---maybe search under Dr. Holman Seattle--someone had been to a conference with his presentation on fibromyalgia and cervical stenosis---he did research similar to that of Dr. Heffez

    my real problems started after injury to neck and eventually had cfs/fms diagnosis in pursuit of treatment. I do have immune irregularities too such as high elastase and low NK etc and Sjogrens.........I think my immune problems tho are related to the cervical stenosis and degenerative joint and disc disease and bulging discs I have....what has been really frustrating for me is not knowing what is more primary..... I had recurring mono-like illness as teen/young adult so there are risk factors for both.

    Dr Wood worked with Dr Holman and this facebook post of his offers good explanation of options if you do have cervical spine issues. Dr Dan Rosner in NC was another one besides Heffez who researched this. I have seen both Heffez and Rosner and also followed up with a neurosurgeon and PT in Seattle in 2015 who had worked with Dr Holman when he was there doing research on it.
    I haven''t decided to do surgery at this point because my fear is with my MCS coupled with it having been 26+ years now of dealing with this is that I may not recover well from the trauma and anesthesia etc of surgery. I have heard from people in midwest that some people were a lot were worse after surgery with Dr Heffez for stenosis or chiari. but then again some have felt better. Its a quandry..........

    https://www.facebook.com/IntegrativeHealthAssociates/posts/937844272909283
     
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  10. xrayspex

    xrayspex Senior Member

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    there was initially some good intrigue around 1998 when Heffez first started presenting his findings of fibromyalgia/cfs being related to stenosis or chiari for some subsets. my rheumatologist heard him talk at conference and was excited and explored it for me. Then there was a really negative article in wall street journal around 1999 that made it sound like neurosurgeon Heffez was operating on sole diagnosis of fibromyalgia and it was kiss of death because other neurodocs distanced themselves from exploring that even tho he would only operate if people met appropriate neuro criteria. I was hopeful to find out Holman reopened it up again and its good to hear torch being carried again now. I wished that there was someone doing the minimally invasive surgeries who would explore it and I also wish they had ways of individualizing anesthesia and medicine more than they do.
     
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  11. xrayspex

    xrayspex Senior Member

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    my primary doc did authorize for me to get an epidural of steroid into neck to see if that would lower inflammation etc I have been too afraid to follow up on it because of my sensitivity to invasive procedures and chemicals. It is an interesting idea but seems high risk too, for me. IF things got unbearable I might try it but I still have enough good moments that I would rue making it worse if that happened.
     
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  12. xrayspex

    xrayspex Senior Member

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  13. xrayspex

    xrayspex Senior Member

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    I did a search here and I think this first came up on this forum about Dr Wood not Dr Holman after Cort went to a conference in 2010, I recall someone else also took copious notes on Wood's presentation but I can't find that post, but here are a couple related, the one by Cort if you scroll down to "Dr Wood advances in FM" will be info related to spine and fatigue etc
    http://phoenixrising.me/archives/1794
    and this was another related thread
    Does anyone else have chronic pain at base of skull and neck?
     
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  14. ChrisD

    ChrisD Senior Member

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  15. xrayspex

    xrayspex Senior Member

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    wow! is that the Charles Edwards from this forum on the paper,collaborating with Peter Rowe too? I did not know this is in the works.

    Interesting timing, thanks for posting this, as I am revisiting the idea of surgery after bonking head and neck again and symptoms flaring again, although it has been 6 weeks and its calmed down quite a bit. I have been questioning what my life trajectory would have been like had I done the laminectomy and fusion that was offered me in 99.....was too controversial for me to go for it at the time. I am hesitant because of being older now and chemical sensitivities make me question how I will survive the anesthesia etc But maybe its time to gamble.

    I did end up trying and buying a frequency specific microcurrent (FSM)machine last year and I do think it is a valid and incredibly useful modality for just about any illness--refer to Carol McMakin research and books. I am debating trying to reduce bone spurs with focused use of FSM and see how far can get with that but on other hand don't want to waste more time if should just get on with the surgery and can then use FSM to recover from it. I don't easily tolerate FSM, just like everything else I try its tricky and have to baby into it and come from experimental homeopathicish angles. But a gentleman in Canada who healed himself from a horrid car accident with FSM and is quite methodical and informed has been encouraging me as he had to also baby self with using just single frequency pairs at first and going through some distress to better tolerance. but I do have some genetic abnormalities that not everyone has so its not like I was just some stout person who had an injury, even when I was heartier and more active could never tolerate coffee or alcohol and meds and certain vitamins well.

    anyway, hopeful that so much more research and info and options are getting out there but darn why couldnt it all have been there so maybe I could have figured this out and had a shot at more of a life in 1990 when had some youth in front of me yet!
     
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  16. xrayspex

    xrayspex Senior Member

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  17. Starsister

    Starsister Senior Member

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    I just discovered this thread but I have always been convinced there is a connection between my spinal problems and other symptoms. When I stand for 5 mins or more, I can feel the nerves pinch more in my lumbar and cervical..then my ears start ringing, I get lightheaded and know I need to get to the floor immediately. It's not enough pain that I would think would cause me to feel dizzy..I certainly have been in a lot more pain without the dizzy. It just feels like something is not able to get up to my brain, so it makes sense it's connected to OI, although When it occurs, I'm never where I can get my bp checked.

    Full exrays show severe scoliosis in big S shape, but spine dr just shrugged shoulders and said it wasn't a surgical issue and suggested it was my BP. I do know I have pots, but just learned about that on my own this year...The pain clinic the spine guy sent me to wanted to give me a shot in my back too, but I also am very sensitive to meds, chemicals and invasive procedures so I don't want to make things worse.
     
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  18. xrayspex

    xrayspex Senior Member

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    sorry to hear this....I think sometimes even if they suspect spine stuff they are afraid to completely open the door of investigation and really figure it out because of the risks and expense of surgery....i wish we were more evolved in healthcare to address these things in more scientific way then some of them do

    intermittent feelings of SOB came on after my stenosis got irritated/activated at the onset of all this--I don't always have it but every day do want to lie down every x number of hours or neck and SOB get worse. I was diagnosed 20 years ago thru tilt table with hypotension but I think my B/P was low and something went wanky with it after neck injury. It has felt like you said as tho something not travelling correctly thru c-spine to head the longer I am upright
     
  19. Starsister

    Starsister Senior Member

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    I'm really hoping to learn more about the connection. A recent chiropractor told me I had hypermobility, which I thought would explain scoliosis, my poor balance, but then I joined a pots FB page and learned there is a big correlation of pots and hypermobility. So was so glad to see these posts discussing both. I will avoid surgery like the plague, but it's frustrating when the drs say my back isn't the problem and nothing they can do, but it controls my life not being able to stand due to lumbar, or eat or have conversation at a table of work a jigsaw puzzle because it is excruciating to bend my neck at a certain angle, or even hold my head up straight.

    I have one chiropractor who has a mechanized table that stretches my lower half and I felt relief after the first time. And a different chiro who has diff kind of table that stretches my neck...sometimes it helps a lot,sometimes Not so much. When I get a headache that won't go away overnight, then I suspect neck cause so go in for adjustment which always helps....and I always have that soreness at the base of my skull. But the hypermobility group says the worst thing you can do us get chiropractic adjustments as it just makes joints looser in long run, so I'm baffled what to do. After an adjustment, I usually feel such relief through my whole body and can FEEL life energy flowing up and down from head to feet. What is SOB?
     
  20. xrayspex

    xrayspex Senior Member

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    yes I was told had hypermobility back after my neck got messed up--the main thing that seemed to mess my neck up was chriropractic, fast old school ones, back at the beginning of these problems. So I have avoided them like the plague but hey we are all different and it makes you feel better go with it as long as they seem competent and know your situation. Maybe some sort of strengthening while lying on floor would be good too though? I dont think I am as mobile anymore because of age and calcification etc

    i am starting to wonder tho if something controls our life this much if that isn't the time to consider surgery? If I do consider it I am going to see how well it works if I insist on some individualized consideration of how they do anesthesia and pain control afterwards given I have abnormal genetic tests that show my sensitivity.
     
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