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Surgery and ME/CFS

Discussion in 'General Treatment' started by EMilo, Sep 6, 2013.

  1. EMilo

    EMilo Elizabethmilo.com

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    I don't know if this is the right section of the forums to post this thread, but I thought some people might be interested in this list I put together... Recently I had new, acute pain in my abdomen and I worried about having to have surgery and/or being incapacitated and what info I would want my husband to be able to produce for the doctors.

    Below is what I put together and I thought it might help someone out there. I wrote my own list and, afterwards, I read Dr. Cheney’s and Dr. Lapp’s advice online (to make my list more thorough). I would love to know if anyone has any more information for safe surgeries and/or hospital stays. I’m hoping preparing for emergencies can mitigate long-term crashes. If anyone is interested in reading my whole blog post, it is here.
    Here is Dr. Cheney’s advice for surgery and here is Dr. Lapp’s (they’re very similar). I also took Sue Jackson’s advice and made the first sentence: “The most important considerations are…”


    The most important considerations are IV fluids, avoiding vasodilators and histamine-releasing agents, and my hyper-sensitivity to medications.

    I have a history of hypoglycemia, idiopathic anaphylaxis, autoimmune urticaria and angioedema, Hashimoto’s, vasovagal syncope.

    I am allergic to NSAIDS and CODEINE/HYDROCODONE and have other presumed allergies which may have caused tongue swelling (see attached list).

    I have orthostatic intolerance (OI) and vasovagal syncope: low blood volume, low blood pressure, high heart rate when standing/moving. Please give me extra saline IVs. Care should be taken to give me adequate hydration prior to surgery and avoid drugs that stimulate neurogenic syncope or lower blood pressure. Syncope may be precipitated by cathecholamines (epinephrine), sympathomimetics (isoproterenol), and vasodilators (nitric oxide, nitroglycerin, a-blockers, and hypotensive agents).

    I am extremely sensitive to drugs, usually taking ¼ doses or children’s doses. Please use all drugs sparingly until my reaction can be assessed and do not over-medicate me.

    Vasodilators, such as nitrous oxide, should not be usedbecause of my history with autoimmune angioedema, anaphylaxis and orthostatic intolerance.

    Use anesthesia that does not release histamine: Histamine-releasing anesthetic agents (such as sodium pentothal) and muscle relaxants (Curare, Tracrium, and Mevacurium) are best avoided because of my history of idiopathic anaphylaxis and allergies.

    Use a non-hepatic anesthesia: Potentially hepatotoxic anesthetic gases should not be used, such as Halothane.

    BEFORE SURGERY: Serum electrolytes, magnesium and potassium levels should be checked preoperatively and these minerals replenished if borderline or low. Intracellular magnesium or potassium depletion could potentially lead to cardiac arrhythmias under anesthesia. A liver panel and a random serum cortisol should be checked prior to any general anesthesia. 24-hour urine cortisol is recommended before and after surgery.

    I have a sensitivity to Epinephrine. For local anesthesia, perhaps use Lidocaine with no epinephrine.

    I have a cervical spine injury. Please be careful and gentle when intubating!

    It would be wise to keep me on oxygen the entire time I am in the hospital.

    Prescription and over the counter medicines and supplements: Please see attached list.
  2. Raindrop

    Raindrop Senior Member

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    Elizabeth,
    Thanks for posting this. Very helpful ! Am perpetually frightened about having any type of sedation
    be that general anesthesia or other. Have a Gastroenterologist that wants to give me Propethol (sp?)
    (which I call the "Michael Jackson drug" although he took in extreme quantity) for a Colonoscopy.
    I haven't ever had it and I know that in the state that I live in that they require an Anesthesiologist.
    (kind of scary for an out-pt procedure) Wondering if anyone out there has had Propethol before for
    this type or procedure and how it went. I am super drug sensitive!
    EMilo likes this.
  3. EMilo

    EMilo Elizabethmilo.com

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    Seattle, WA
    In the link above to Dr. Lapp's recommendations, he says propofol is generally well tolerated. That's all I know. I have been refusing a colonoscopy for years because of fear but also because I am allergic to codeine-type drugs AND NSAIDS. It doesn't leave much. Good luck!
  4. minkeygirl

    minkeygirl Senior Member

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    Left Coast
    I had a colonoscopy in 2010. I wanted Propofol because I love benzos and didn't want the Versed and other stuff they give you. Because Propofol has to be administered by an anesthesiologist, I couldn't get it. You can ask for what you want re: codeine stuff and NSAIDS. Just tell them what you can't have and they should be able to accomodate you.

    But what is good about it vs. versed is that I believe it is in and out of your system really quickly, unlike benzos.

    I also had general in 2005 when I had lithotrypsy and had no problems with that. But I was also not this ill.
  5. dsdmom

    dsdmom Senior Member

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    I had propofol for an upper endoscopy. LOVED it. And I HATE drugs particularly sedatives because I am so sensitive. So I was nervous about the propofol but I did fine with it. What was really great is how quickly it wears off. So I really wasnt groggy even 15 min after administration when the procedure was over.
  6. Raindrop

    Raindrop Senior Member

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    I am happy to hear it went so well for you!! Versed and pain killers make me very sick. How did they administer the Propofol to you? By IV?? It would be helpful to hear from anyone out there
    who has had this drug for a Colonoscopy - Did they do a "general" or an IV of it? Also did you ask for
    a more modified (lesser) amount due to drug sensitivity?
  7. dsdmom

    dsdmom Senior Member

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    I did ask for a lesser amount but I'm sure they titrated to what they felt was appropriate based on my response. Pretty sure it was iv. I had a colonoscopy before w versed & other things and did not do great with those drugs so I was pleasantly surprised with the propofol. That said, we all react so differently. I guess I just wanted you to know that it is possible to do ok w it. If I had the choice I would take it over any other sedatives in the future.
    Raindrop likes this.
  8. Raindrop

    Raindrop Senior Member

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    OK......This is great news!! I have heard several comments about it being a "good" drug for this kind of thing.
    It's just seems scary because I have never had it and it *requires an anesthesiologist*. I have become much more
    fearful of new drugs over the last several years as have become severely drug intolerant to even very minor drugs.
    Thank you for reassuring me based upon your experience.
  9. WillowJ

    WillowJ Senior Member

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    WA, USA
    I had one kind of narcotic that was great and one kind that helped but made me dizzy (only in ER or for procedures like colonoscopy). I don't know the names of them. I actually need more of this class of medicine than expected, although I need less of other medicines.

    I thought it was the sedative that made me feel icky, but after having just the pain med, it may have been that.

    Either way, it was recoverable within days for me.
  10. Raindrop

    Raindrop Senior Member

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    I have had very bad nausea from the pain medication after a breast biopsy surgery and after my
    last colonoscopy. Have bad responses to all Rx'd pain meds too. I wonder if a lot of us do -?

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