Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Thoracic Outlet Syndrome - just diagnosed

Discussion in 'General ME/CFS Discussion' started by ScottTriGuy, Mar 1, 2017.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Spoke briefly with my doc and he said the vascular ultrasound on my arms showed Thoracic Outlet Syndrome (TOS). I have an appointment with him on Monday to get more info.

    So I checked out wiki - I don't seem to have any of these symptoms:

    From wiki: https://en.wikipedia.org/wiki/Thoracic_outlet_syndrome

    "TOS affects mainly the upper limbs, with signs and symptoms manifesting in the shoulders, neck, arms and hands. Pain can be present on an intermittent or permanent basis. It can be sharp/stabbing, burning, or aching.

    TOS can involve only part of the hand (as in the pinky and adjacent half of the ring finger), all of the hand, or the inner aspect of the forearm and upper arm.

    Pain can also be in the side of the neck, the pectoral area below the clavicle, the armpit/axillary area, and the upper back (i.e., the trapezius and rhomboid area). Discoloration of the hands, one hand colder than the other hand, weakness of the hand and arm muscles, and tingling are commonly present."

    My experience is that lifting things or raising my arms above my head causes me to be light headed, nauseous with a great need to be horizontal until my body stabilizes. I don't have pain.

    I also don't have delayed PEM. Mine is immediate or within minutes of exertion. In spite of my protestations, testing doesn't show memory impairment, but perhaps my brain fog is not in the memory part of my brain.


    But I thought this part was interesting:

    "...If left untreated, TOS can lead to neurological deficits as a result of the hypoperfusion and hypometabolism of certain areas of the brain and cerebellum."


    Perhaps I've had undiagnosed TOS and its causing my ME symptoms via hypometabolism of certain areas of my brain and/or cerebellum?

    And surgery may set me free from ME?

    Really trying not to get ahead of myself so am tempering my hope.
     
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  2. Denise

    Denise Senior Member

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    I will keep my fingers crossed for you @ScottTriGuy .

    Interestingly (to me at least), I have heard of a few ME clinicians who are now routinely checking patients for TOS.
     
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  3. Old Bones

    Old Bones Senior Member

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    I'm keeping my fingers (and toes) crossed for you, @ScottTriGuy ! Thanks for letting us know the results of your vascular ultrasound.
     
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  4. adreno

    adreno PR activist

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    I have TOS. It started years before ME set in. I was able to exercise with TOS without PEM. I don't think it is a cause of ME, although I think it is likely to make it worse.
     
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  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks @Denise and @oldbones

    Since repetitive exercise may be a cause of TOS, my years of swimming may be to blame. However, I only experienced problems with my arms on my third, most serious ME relapse.

    Poor hunched posture may also cause TOS. And my posture has become very poor - its too much exertion to sit up straight, so that may be to blame and the timing makes more sense.

    Hopefully will get more details at my appointment on Monday but I'm not holding my breath that this will be my answer to ME.
     
  6. Mij

    Mij Senior Member

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    Best wishes @ScottTriGuy I hope you find answers and a surgery will cure you!

    One comment on not having delayed PEM, I've developed both delayed and immediate PEM over the years. The immediate type of PEM symptoms don't involve OI but seem to be related to an immune response, possibly due to a viral infection.

    The delayed PEM brings on OI symptoms, dehydration, heart racing when standing, dizzy, nausea, cognitive problems and puts me into deep distress- I just want to die.
     
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  7. Mary

    Mary Senior Member

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    @ScottTriGuy - wow - I hope this leads to some answers and help for you! Yes, I know you need to temper your hope ... Keep us posted - I'm so glad you have a doctor who thought to do this testing! :thumbsup:
     
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    To be honest, I was never convinced that TOS was a useful diagnosis. It is a rag bag of compression problems, each of which is different. And I am not sure I ever found the need to diagnose any of them thirty years. Lots of other things like cervical disc problems and carpal tunnel syndrome are much commoner.

    Feeling bad on lifting arms up would not seem tome to have anything to do with TOS. If you lift the arm up the compression is supposed to be relieved. Brain problems are not really part of TOS - the come from vertebral artery problems, which can also be in the neck but not the thoracic outlet. The Wikipedia article looks a bit of a jumble of Chinese Whispers to me.

    I find it hard to see how TOS could mimic ME.
     
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  9. Marco

    Marco Grrrrrrr!

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    Likewise. There should be some sort of joke involving PWME and lightbulbs.
     
  10. Butydoc

    Butydoc President

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    Having done about 20 of these procedure during my general surgery residency, I don't recall any of these patients having symptoms similar to ME/CFS.
     
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  11. daisybell

    daisybell Senior Member

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    How many people with ME does it take to change a lightbulb?
    None - we live in the dark.....
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    @ScottTriGuy I remember when you posted a few weeks ago re: having a vascular ultrasound but at that time you were not sure which type or what they were looking for. Do you know now what symptoms prompted your doctor to look for Thoracic Outlet Syndrome and which type of ultrasound you had? Although it is only one piece of my illness, I have read about TOC and it matches very well w/what I experience w/my right arm, shoulder, side of neck, etc, in regard to both pain and weakness. I've often wondered if this pertained to me but have never pursued it. Hoping you will keep us posted as you learn more!

    Even if the term "TOS" is a rag bag of compression problems, couldn't the compression problem be real and cause symptoms that could possibly be corrected? Am curious to hear your opinion of this (separate from Wikipedia LOL).
     
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  13. Shoshana

    Shoshana Northern USA

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    " Really trying not to get ahead of myself so am tempering my hope. "


    Yes, I suggest what you said.....

    Try not to get ahead of yourself,
    and

    try to temper your hope.....

    a bit.....

    but holding onto some hope is also important.
    And understandable.

    I hope for you, there will be some treatment that helps you overall.

    If this becomes NOT an answer for you,

    it will be disappointing of course...yet,

    try not to lose all hope then.

    Something else.....we will hope for something else.... soon.

    Shoshana
     
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  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    @Gingergrrl When I described my experiences when using my arms above me head to a new (functional) physician, he ordered the vascular ultrasound.

    Although I'll get more info and a copy of the report on Monday, I did also learn today that the artery and vein in both arms are completely cut off when my arms are parallel to the ground and above - which explains why I'm more comfortable driving with my hands at 5 and 7 (on the clock) rather than 10 and 2.
     
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  15. Strawberry

    Strawberry Senior Member

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    Hmmm, that is exactly how I drive. I can hold my right arm at 2 oclock (or 3) for a short time (if driving at high speeds) but not long.
     
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  16. daisybell

    daisybell Senior Member

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    I drive like that too - I don't have the energy to hold my arms higher...
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    Thank you and that is so interesting. No Neuros were interested in this symptom in my case but raising my arms above my head is the absolute hardest thing for me to do, and even harder if I were to attempt to do it while standing (which I wouldn't dream of doing at this point although I do believe it will be possible in the future). I am certain it is an autonomic issue for me but now hearing about TOC and your vascular ultrasound it's making me wonder.

    When you say a "functional physician" what would that be called in the US vs. Canada? (re-reading that last sentence sounds like a joke waiting for a punch-line but am actually being serious)! Would it be like a Naturopath or Osteopath?

    So the Ultrasound showed that the artery and vein in both arms were completely cut off?!!! Does that mean that you have TOC on both sides of your body vs. just one?

    Also, were your arms in different positions for the ultrasound to capture it (like supine, sitting, arms raised above head, etc).

    I am still not well enough to drive but if I ever did, I am 100% certain that my arms would be at 5 and 7 as well (but first I'd need enough arm strength to move the gear shift LOL). I actually believe that day is coming just not yet.
     
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  18. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I had an appointment today with the heart doctors about my OI symptoms - I mentioned about the vascular ultrasound at the same hospital and they accessed the results (yet couldn't print me a copy because their computer is not connected to a printer, and gawd forbid a patient should see or have a copy of their test results) and if I recall correctly he said both arms - on Monday when I see the functional doc I'll get the complete low down.

    I didn't know what, or that he was a functional medicine physician until he told me. I only booked the appointment because an acquaintance said he prescribed dessicated thyroid hormone - and presto-mundo!, 15 months later my appointment date came.

    He's a certified Canadian physician, but seemingly approaches health care differently - I just found this definition which reflects my experience:

    "Functional Medicine addresses the underlying causes of disease, using a systems-oriented approach and engaging both patient and practitioner in a therapeutic partnership. It is an evolution in the practice of medicine that better addresses the healthcare needs of the 21st century.

    By shifting the traditional disease-centered focus of medical practice to a more patient-centered approach, Functional Medicine addresses the whole person, not just an isolated set of symptoms.

    Functional Medicine practitioners spend time with their patients, listening to their histories and looking at the interactions among genetic, environmental, and lifestyle factors that can influence long-term health and complex, chronic disease. In this way, Functional Medicine supports the unique expression of health and vitality for each individual.
    "

    - See more at: https://www.functionalmedicine.org/What_is_Functional_Medicine/AboutFM/#sthash.D4S0eV3g.dpuf

    I was only sitting and she had me raise my arms in front, parallel to the floor, and also straight up above my head.

    Hope you get some investigation happening for your symptoms.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    That is so interesting and here most doctors and hospitals use the "My chart" system so patients often log-in and see the test results before the doctor even does (which is not necessarily good either).

    This sounds great in theory, if it were really practiced that way vs. just words on paper, and I'm hoping that your doctor puts the entire puzzle together for you.

    Thanks! Did the ultrasound of your arms have a name besides "vascular ultrasound"?

    Thanks and your post has been very helpful to me and I look forward to hearing Part 2 after your appt on Mon!
     
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  20. Hutan

    Hutan Senior Member

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    I like to drive with my hands at 10 o'clock and 2 o'clock. But if I'm driving for more than 15 minutes, I get pins and needles in my hands. So then I have to drive mostly one handed, resting the other hand on my knees for long enough for it to feel normal again. I've never mentioned it to a doctor - maybe I should.

    I get the same thing happening when I sit at a table to eat.

    Good luck @ScottTriGuy, I am looking forward to hearing how you go with this.
     
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