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Going to have surgery, where is the National CFIDS protocol for Anesthesia?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by *GG*, Feb 29, 2016.

  1. *GG*

    *GG* Senior Member

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    Looking into having the anesthesiologist take this into consideration. Looking for something to print, no printer at home, so PDF would be good. Can go to library and have it printed.

    Surgery is for umbilical cord hernia. FYI

    GG
     
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  2. Denise

    Denise Senior Member

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  3. 5150

    5150 Senior Member

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    My understanding of anesthesia & its' effects on our patient group, is that Propofol is better tolerated than Versed, and in my case I can verify that.

    Best wishes for getting that hernia fixed. It seems to be a pretty common problem with us. I had it / SIBO related, and beating constipation helped me. Probiotic VSL#3 has aided my gut issues, and now the umbilical cord hernia has pretty much gone away.
     
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  4. *GG*

    *GG* Senior Member

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  5. perrier

    perrier Senior Member

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    Interesting info about anaesthesia.

    What is the impact of major surgery and the ME population?

    Yesterday, we were told that the doctors recommend surgery to explore her gut. She has now hemorrhaged for the 6 th time, and non of the scope or scans, and there have been many have located the source of the bleed.

    A video capsule showed blood in the upper bowel, in what the doctor called no man's land.

    So, he's suggesting surgery.

    We are in Canada where the services are so abysmal it's frightful. No one even took her vitals yesterday at emergency.

    Is it worth going to the Mayo?

    I'm beside myself with this nightmare. As if ME were not enough, now these bleeds and surgery.
     
    Billt likes this.
  6. Sing

    Sing Senior Member

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    Surgery has become normal for so many people and different problems, but based on my own experience and some anecdotes from others with ME, it can lead to serious worsening. My view is that first of all our patient population needs a big research project to see what the aftereffects of surgery are for us. My other opinion is for myself, I am never going to have surgery and full anaesthesia again if I can avoid it.
     
  7. perrier

    perrier Senior Member

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    Please let me know what happened to you?

    My daughter is having hemorhaging requiring multiple transfusions,she can't go on like this. I don't want the surgery for her, but she's in a serious situation.

    And I'm grateful for your response.
     
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  8. Sing

    Sing Senior Member

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    I was once told by a retired nurse friend that full anaesthesia damages the nervous system. I was surprised by this as I had never heard it. I had started a gradual onset of ME at that point. I did have some short minor surgical procedures earlier on, which did not seem to have any unexpected bad effects, but when in my early 60's, choosing to have a full hip replacement to deal with arthritis, went into serious orthostatic hypotension afterwards which never cleared up. Before that I had had only had a slight tendency to low blood pressure. I did have some other autonomic nervous system symptoms. But after that surgery seven years ago I have a semi-disabling problem with low blood pressure.

    I have also heard of those with ME developing unexpected infections after surgery.

    I know surgery can be helpful if not life saving depending on the problem, but think it may be helpful to pass the word along to consider your options and be careful.
     
  9. Kati

    Kati Patient in training

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    Sending best wishes for your surgery @*GG*. Anesthesiologists do this all day long. Surgeons do this all day long. Hopefully it is all straightforward. Follow the directions of your surgeon regarding post surgery activities, and do make sure you move around a bit (move legs) to prevent blood clots..
     
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  10. *GG*

    *GG* Senior Member

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    Thanks, had the surgery mid-March and gave the info to the anesthesiologist. Believe it was considered in my procedure. The surgery went well and I am all healed now!

    GG
     
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  11. Kati

    Kati Patient in training

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    Glad to hear Gg. If only we could have access tot the he same kind of treatment for the ME ;)
     

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