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CFS and anesthesia

Discussion in 'General Treatment' started by dsdmom, Feb 24, 2010.

  1. dsdmom

    dsdmom Senior Member

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    I've done a search on the forum and can't seem to find anything regarding CFS and anesthesia/surgery. If I am missing something and somebody knows where there is already a thread, please let me know!

    Otherwise, I am looking for information regarding having surgery with CFS. I am worried about a major relapse that may put me back to where I was when I first got sick 3 years ago - mainly with awful autonomic issues. Is this possible? What types of precautions need to be taken when having anesthesia? Does anybody have any good stories/outcomes they can share?

    Thanks!
  2. Lily

    Lily *Believe*

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  3. IntuneJune

    IntuneJune Senior Member

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    Anesthesia

    I have had two surgeries in the past two and a half years and two diagnostic procedures requiring anesthesia. Versed or similar anesthetic was used for conscious sedation.

    Anesthesia of course depends on the complexity of surgery, but if I can "get away with it" I opt for conscious sedation.

    June
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi dsdmom,

    I know you have autonomic problems and anesthesia can be an issue with this. One this is to make sure that really hydrate you first--my autonomic specialist used to say a minimum of 2 bags of saline. I was looking for something written on this--couldn't come up with it though I think there may be something on the PotsPlace site. I also remember that a central line was suggested. It is good to check this cause the wrong anesthesia protocol could set you back.

    Best wishes,
    Sushi
  5. Alesh

    Alesh Senior Member

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    If possible the epidural anesthesia would probably be a safer option. And my small conjecture is that some drugs used for anesthesia induction can have positive effect on ME/CFS, perhaps ketamine being an NMDA antagonist. Actually I am thinking about trying ketamine or MK-801 but of course much smaller doses than used for anesthesia and under medical surveillance.
  6. shrewsbury

    shrewsbury member

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    ME/CFS and anaesthesia

    hi dsdmom,
    Like Lily, I know I have something on this somewhere - but not sure where to find it. I remember that it's best to avoid it if possible, that we tend to be sensitive so dosing may be an issue + there were a number of pre & post steps to take. I will look for it, but in the meantime, found this for you, Hospital, anaesthetics, dental work and ME/CFS from ME CFS Australia (Victoria).

    Good luck.
  7. dsdmom

    dsdmom Senior Member

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    Thank you all for your help. I've found some info by googling and hope that if it comes to it, I can find an anesthesiologist who will listen. It's the relapse that I fear the most and yes, Sushi, you're right - the autonomic stuff is the worst for me.
  8. Hysterical Woman

    Hysterical Woman Senior Member

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    dsdmom/anesthesia

    Hi dsdmom,

    Sorry to dump one more thing on you regarding the anesthesia, but I read in the "Could It Be B12" book that B12 levels should be checked prior to surgery. This is especially true if some of the anesthesia is nitrous oxide based. Unfortunately, B12 levels can be hard to test and the serum level is not a good indicator. The book recommends having a MMA by urine and plasma homocysteine. Unfortunately you sometimes have to fight to get these tests run. Sigh.

    Good Luck,

    Hysterical
  9. FernRhizome

    FernRhizome Senior Member

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    Everyone may be somewhat different depending on mitochondrial disease....the most commonly used seadative, versid, causes a SEVERE relapse in me....! ~Fern
  10. shireheart

    shireheart

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    Page with Anesthesia Recommendations

    I used to sysop for the Chronic Illness Forum in CompuServe. We had some recommendations about this, written by doctors for doctors, and they are reprintable with attribution.

    Since that forum is no more, I dug the recommendations out of my library and put them up on a Squidoo lens. I added my own explanation of the reasoning behind them--I hope I translate them well enough from medical jargon into ordinary English. I also provide links to a few sites with further (especially technical) information. You can vote links up or down in the list, submit proposed additional links, subscribe to it via RSS or add it to your blog as a widget.

    The lens is at http://www.squidoo.com/anesthesia-with-CFS and I hope you find it helpful.
  11. leaves

    leaves Senior Member

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    I went under generl anasthesia a while back. Noticed ill effects for a week or so, but I guess this is personal. Make sure you receive at least 2 iv's one before and one after the procedure, and that you get enough of oxygen. I also received intraveneous antibiotics. Actually because of this I felt GREAT after the surgery... it was only later that I got worse.
  12. gracenote

    gracenote All shall be well . . .

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    shireheart,

    It looks like you've collected some useful articles here. Thanks for posting. And welcome to the forums.
  13. silicon

    silicon Senior Member

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    From the NCF website:

    "Some research has found that a substance, much like ciguatera toxin, is being produced in the body by a disease process in those with CFIDS/ME/CFS. Dubbed the “ciguatera epitope,” this research explains the danger of using any anesthesia that uses the sodium channel at the cellular level. Some anesthesiologists have had success blocking the sodium channel during anesthesia for CFIDS/ME/CFS patients."

    http://www.ncf-net.org/patient-physician.htm
  14. Athene

    Athene Never give up

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    dsdmom, you've already had good advice ad I'd like to add mine. I've had 2 operations in the past 5 years.

    1. You need to find out what they are intending to use for the pre-med and the anaesthetic - both of these could make you a lot iller than you are. You will find the best up-to-date information on the safest options by googling anaesthesia for autistic patients. Their methylation problems are the same as ours, usually worse, and anethesia tends to produce more dramatic results for them so that is where the main research has been done. If necessary you can skip the pre-med altogether. This is unpleasant but they do it for C-sections and I handled it without going hysterical.
    2. Get your cortisol measured. If it is low you will feel awful after the operation and recovery will be slow. If it is high, this is good for you.
    3. You need to get on a very high dose of vitamin C before the operation to help speed up healing. Vitamin A and E will also help as will essential amino acid supplementation. You need to start these before the op and keep going for at least 2 months afterwards.
    4. Do all you can to get your methylation cycle up and running effectively as this is what gets the anaesthetic out of you. Read the methlation threads and inject B12 if necessary.
    5. After the operation you can ask for breathing exercises with a physio. This helps you puff the anaesthetic out from deep in your lungs, which can otherwise stay there gently diffusing for weeks.
  15. MaryAnn

    MaryAnn

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    Hello All

    I am new to this Forum and greatly appreciate this information. My daughter (26 yrs old) needs surgery tomorrow. She has had CFS for 15 months. She has had a low grade fever today and her heart rate/pulse has been overly rapid (I took it today at 91). Her BP is 101/64. I am worried about her heart (EKG was done yesterday and came out fine as well as her blood work). However, reading on this Forum leads me to believe that there are many things that do not show up on usual tests. We will not get to talk to the Anesthesiologist until just prior to the surgery. I am scared to have her put under. I have not found doctors to be very sympathetic to CFS.

    Therefore: Should she load up on magnesium and potassium via pills today? Then tell anesthesiologist not to give Epinephrine-Histamines and Hepatoxins; also, block the sodium channel.

    Thanks you all so much...the surgery alone is enough to worry me without thiinking she will have problems with coming out of the anesthesia.
  16. glenp

    glenp "and this too shall pass"

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    I had an email from the group in Hawaii studying ciguatera, stating that most with CFS have ciguatera and that it is very important that a specific protocol be followed when administering anaesthetic - I would make sure that the anaesthetist is aware.

    glenp
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi MaryAnn,

    I know you are coming into this info on CFS and anesthesia just before you daughter's surgery, but...I would be very insistent about having a good talk with the anesthesiologist before your daughter's surgery. The right approach from the anesthesiologist is extremely important with CFS.

    So maybe you could take note of many of the notes here and discuss them with the anesthesiologist--with the knowledge that you are likely to know more about this (from what you have read here) than he/she will. And, you do have a say in this--make sure he/she takes you seriously.

    My doctor used to say that it was very important to get a couple bags of saline before surgery too (that has been noted, I'm sure--maybe even by me! :ashamed:)

    But just remember that that the anesthesia part of the surgery is critical in CFS. I don't want to alarm you, but please assert your "patient's rights" here!

    Best wishes for tomorrow!
    Sushi
  18. flybro

    flybro Senior Member

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    pluto

    Hi glenp

    I'm putting this link in from MSNBC for CIGUATERA, intresting that a fish poisoning can be confused for MS. PEM seems to be in there as well.

    I wonder what in the fish poison causes the neuro problems. anyway heres the link http://www.msnbc.msn.com/id/29392319/

    and this

    Symptoms
    Hallmark symptoms of ciguatera include gastrointestinal and neurological effects.[4][5] Gastrointestinal symptoms include nausea, vomiting, and diarrhea usually followed by neurological symptoms such as headaches, muscle aches, paresthesia, numbness, ataxia, and hallucinations.[1][5] Severe cases of ciguatera can also result in cold allodynia, which is a burning sensation on contact with cold (commonly incorrectly referred to as reversal of hot/cold temperature sensation).[4] Doctors are often at a loss to explain these symptoms and ciguatera poisoning is frequently misdiagnosed as Multiple Sclerosis.[6]
    Dyspareunia and other ciguatera symptoms have developed in otherwise-healthy males and females following sexual intercourse with partners suffering ciguatera poisoning, signifying that the toxin that produces ciguatera poisoning may be sexually transmitted.[7] As diarrhea and facial rashes have been reported in breastfed infants of mothers with ciguatera poisoning, it is likely that ciguatera toxins are also transferred into the breast milk.[8]
    The symptoms can last from weeks to years, and in extreme cases as long as 20 years, often leading to long term disability.[9] Most people do recover slowly over time.[10] Often patients recover but redevelop symptoms in the future. Such relapses can be triggered by consumption of nuts, alcohol, fish or fish-containing products, chicken or eggs, or by exposure to fumes such as those of bleach and other chemicals. Exercise is also a possible trigger.[1] The symptoms of ciguatera may vary with ethnicity with Filipino or Chinese people possibly being more susceptible.[1]
    Detection methods

    Modern scientific detection

    Currently, multiple laboratory methods are available to detect ciguatoxins, including liquid chromatography-mass spectrometry (LCMS), receptor binding assays (RBA), and neuroblastoma assays (N2A). Although testing is possible, in most cases liquid chromatography-mass spectrometry is insufficient to detect clinically relevant concentrations of ciguatoxin in crude extracts of fish.
    [edit] Folk science detection

    In Northern Australia, where ciguatera is a common problem, two different folk science methods are widely believed to be available for determining that fish harbors significant levels of ciguatoxin. The first method is that if a piece of fish is contaminated with the toxin, flies will not land on it. The second is that the toxin can be detected by feeding a piece of fish to a cat, as cats are allegedly highly sensitive to ciguatoxin and will display symptoms. There is a third, less common method for ciguatera testing that involves putting a silver coin under the scales of the suspect fish. If the coin turns black, reportedly, the fish is contaminated; but if it does not turn black then it should be safe. It is not known whether any of these tests produce results that are actually accurate.
    [edit] Treatment

    There is no effective treatment or antidote for ciguatera poisoning. The mainstay of treatment is supportive care. There is some evidence that calcium channel blocker type drugs such as Nifedipine and Verapamil are effective in treating some of the symptoms that remain after the initial sickness passes, such as poor circulation and shooting pains through the chest. These symptoms are due to the cramping of the arterial walls caused by maitotoxin[5][11][12][13] Ciguatoxin lowers the threshold for opening voltage-gated sodium channels in synapses of the nervous system. The effect of opening a sodium channel will cause depolarization, which could sequentially cause paralysis, heart contraction, and changing the senses of hearing and cold. Nifedipine is a calcium channel blocker.[5] Some medications such as the use of Amitriptyline may reduce some symptoms of ciguatera, such as fatigue and paresthesia,[14] although benefit does not occur in every case.[15] Also used are steroids and vitamin supplements, but these merely support the body's recovery rather than directly reducing the toxic effects.
    Previously mannitol was used for poisoning after one study reported the reversal of symptoms following its use.[5][16] Followup studies in animals[17] and case reports in humans[18] also found benefit from mannitol. However, a randomized, controlled, double-blind clinical trial of mannitol for ciguatera poisoning did not find any difference between mannitol and normal saline,[19] and based on this result mannitol is no longer recommended.[4]

    that was from http://en.wikipedia.org/wiki/Ciguatera
  19. MaryAnn

    MaryAnn

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    Thank you for your thoughts for tomorrow. I will be providing a copy of the information everyone provided to the anesthesiologist. I just hope that he/she is not as arrogant as the ER doc was a few weeks ago. I know that you all have experienced the 'unbelieving.'
  20. Wasbeer

    Wasbeer

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    Thank you very much Shireheart, this is something I can take with me to the hospital. Great job.

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