News Feed Discussions Surgery with Chronic Fatigue Immune Dysfunction

  • Surgery with Chronic Fatigue Immune Dysfunction

    Posted by bayblu on August 16, 2014 at 2:38 am

    Hello Dr. Towfigh,

    I’m scheduled for a consult on Monday, Sept 22 with you and if a hernia is found, I’m scheduled for surgery on Wednesday, Sept. 24. I have some concerns about surgery because I am mostly bedridden from Chronic Fatigue Immune Dysfunction Syndrome aka Myalgic Encephalomyelitis, and I also suffer from severe Fibromyalgia.

    The protocols for surgery are different for those of us with these chronic illnesses. i plan on bringing a card which will state my needs for anesthesia, but I’ve been reading that some anesthesiologists ignore this protocol and just do their usual procedure.

    This blog explains my situation: http://www.cortjohnson.org/blog/2013/08/17/three-months-three-surgeries-no-relapse-a-personal-guide-to-surviving-surgery-with-chronic-fatigue-syndrome-mecfs/

    It’s awesome that you have this forum, because it helps me to be able to inform you of this situation prior to flying in for my possible operation.

    I’m 99% certain that I have a right inguinal hernia. I was told my ultrasound was negative and 2 different doctors have told me they don’t believe I have a hernia. Well, we’ll see. I really am grateful that you are able to find hidden hernias in women.

    There are other protocols for surgery for Fibromyalgia as well, such as these: http://chronicfatigue.about.com/b/2011/04/18/facing-surgery-with-fibromyalgia-chronic-fatigue-syndrome.htm

    It would be nice if the anesthesiologist is able to follow all that I may need, but I can’t necessarily expect that. The biggest concern that I have though, is that I’m not given any kinds of Opiates, Epinephrine, Benzos like Klonopin, and probably all other sedating meds, Neurontin, Antidepressants, oral or intravenous antibiotics as in the past I have had very bad reactions to those. It’s very important to note that I cannot handle micro-dose levels of these substances either. Also, I should not be given any steroids. Topical antibiotics are just fine for me though. I hope they will use the right kinds of drugs to put me under, and keep me under, without the horrible side-effects people with my illnesses tend to suffer from when these protocols aren’t adhered to.

    I realize that the link in the about.com article that states:
    “Request that you be given a pre-operative opioid pain medication – about 90 mins. prior to surgery. Opioids are morphine or morphine related drugs. The rationale for the pre-operative use of opioids is to minimize “central sensitization” – as this inevitably worsens the widespread body pain that you are already experiencing. Two to three grams of magnesium sulfate given intravenously over a period of 45 – 60 minutes has also been recommended to minimize central sensitization.”

    is recommending opioids, but that is for Fibromyalgia-only patients, NOT patients like me, who also have ME/CFS. I cannot handle opiods.

    I’m sorry my situation is so freaking complex.

    Thank you so much.
    bayblu

    bayblu replied 9 years ago 2 Members · 11 Replies
  • 11 Replies
  • bayblu

    Member
    March 26, 2015 at 1:28 am

    Surgery with Chronic Fatigue Immune Dysfunction

    Hi,

    Thanks for having Chris get back to me. I explained to Chris that Fibro may be the reason I’m still having hernia pain, because, for instance, if I have a mammogram, with the machine or manually, I have extreme breast pain that lasts for 2 months each time! After that, the breast pain disappears completely again until the next mammogram. That’s crazy, isn’t it? Fibro is super weird like that. I never had issues like this in the decades before I developed severe Fibro. Because of this, I haven’t had a mammo for the past few years, and I’ve had almost no breast pain like that again. I still get some stabbing pains or other pains there, which Fibro causes everywhere in my body, but that’s completely different from the continual post-mammo pain.

    Edited to Add (ETA): I just remembered that after I see doctors who palpate my abdomen (and this was also back when my fibroid tumors were only a couple of mm.) I also have all these strange residual pains throughout my abdomen for a week or more. I try to put this kind of pain out of my mind as soon as I realize it’s Fibro-related, so I forgot about this. So, healing from major surgery is, of course, going to cause extra pain and for much longer than would be expected, because of my Fibro.

    From what I’ve read, any old injury can act up again in those of us with Fibro as well. So we’ll wait and see with the hernia pain. It’s only gone up to about a 3.5 so far, on a scale of 1-10, but I haven’t been able to stay up in the kitchen longer than 10 min. or so, because of all my other issues and recuperating from my other surgery, so I’ll write again when I can actually try to cook and be in there for an hour or longer, because that’s what was causing the inguinal pain to go to 10 and beyond, pre-surgery.

    I plan on working out on my exercise ball like I used to starting in April, which is what the doctors in your office advised. I’ll start out slowly, of course. I really want to rebuild my core muscles and see how much mobility I can get back, in spite of all my other issues. Before surgery, the inguinal hernia pain on my right side prevented me from being able to stay on the ball for more than 10 min. at a time, but before I even had hernias, I could be on the ball for three hours or more with no notable inguinal pain at all. I really hope I can have that again, and more, like riding my bike.

  • bayblu

    Member
    March 25, 2015 at 9:56 pm

    Surgery with Chronic Fatigue Immune Dysfunction

    Hi Dr. Towfigh,

    Well, just like you said, Cedars Sinai is top-notch in patient care and I had an excellent experience with my surgery. I’m back to the way I was before with my chronic illnesses and chronic pain, but at least I’m not worse than I was. The care I received was incredible and thank you so much for setting me up in such a beautiful room at Cedars. I couldn’t believe the gorgeous views, and my husband and I were very pleased with having such a nice room.

    I continue to heal well from the surgery. I do still experience hernia pain that comes and goes on both sides, but more on the right side, like before. The doctors I saw in your office assured me that was normal the third week after my surgery, so I’m hoping it’s still normal now, eight weeks post-surgery. The pain mostly comes on when I’m sitting on my chair with wheels in the kitchen, but it hasn’t become excruciating like it did before, although I haven’t been able to be up for very long yet. I’m still healing from the rest of the surgery as well, and I’m still experiencing pain from that, too, but I continue to improve every day.

    I’m really pleased with the fact that you were able to use the surgical opening from my hysterectomy to get to both hernias. Also, you did an awesome job sewing up my surgery wound. The nurse I saw at our hotel told me that it looked like the handiwork of a plastic surgeon, and she said, she should know because she used to work at one of the top plastic surgeon’s offices in Beverly Hills. I’ve also compared it to surgery scars I’ve seen on the web, and yes, you did a beautiful job. Thank you so much.

    I feel very fortunate that I was able to have my surgery done by you and Dr. Aliabadi.

    Sincerely,
    bayblu

  • bayblu

    Member
    October 22, 2014 at 4:01 am

    Surgery with Chronic Fatigue Immune Dysfunction

    Thank you so much, Dr. Towfigh. I really appreciate all you’re willing to do for me. My husband says, “You’re the Best!” and I think so too. :cheer:

  • drtowfigh

    Moderator
    October 22, 2014 at 3:46 am

    Surgery with Chronic Fatigue Immune Dysfunction

    These requests are all doable. We will assign you to an anesthesiologist to make sure all protocols are followed. I’ll have my office set that up for you.

    No worries about Cedars-Sinai. With good communication, everything will be just fine. It’s a fantastic hospital with excellent nursing care.

  • bayblu

    Member
    October 17, 2014 at 11:07 am

    Surgery with Chronic Fatigue Immune Dysfunction

    Hi Dr. Towfigh,

    I’m sorry to bother you about this, but I was reading reviews for Cedars Sinai and I came across some that state that some staff at Cedars tells patients that there are no narcotics in their epidurals, but that there actually are, and that the anesthesiologist admitted their were.

    Here’s one part of a review I read:

    “Birth Plan Violation #1 (Do not offer me drugs) Requested No epidural- was literally convinced into epidural- was told epidural had no narcotics. By Nurse Violet and two other attending nurses, all with a dismissive “oh, no, of course it doesn’t!” No narcotics, ever! (While the MD Anesthesiologist) confirmed the fact that their particular epidural combination HAS and did in fact have a narcotic component which was in fact put into my clients body and was probably what was causing the itching and discomfort- allergic reaction.”

    You can read the rest here if interested:
    http://www.yelp.com/biz/cedars-sinai-los-angeles-2

    If you recall, after we cancelled the first operation, you told me not to worry about receiving narcotics during my aftercare because they were going to use an epidural in me. I read about it, and I was okay with the idea because I read they can just use a local anesthetic, maybe like Lidocaine, which I know I tolerate well, and a nerve blocker.

    Well, now I’m very afraid that they are going to put narcotics in this epidural. I’m not just concerned about a rash, or itching. From past experience, I cannot handle medications like narcotics, even in minute doses, they are a nightmare for my body and mind. I wonder if they just told you that it will be fine, but it really won’t.

    I’m not sure if there’s anything even you can do about this. The review above was written by a birth doula, and she was overruled by the nurses and doctors at Cedars Sinai.

    I’m quite worried now. I wish I didn’t have a major drug sensitivity, but I do.

    Update: I’m editing this to add that I just read this article and parts of it sound like a good plan for someone like me:

    http://uvahealth.com/about/news-room/archives/helping-abdominal-surgery-patients-recover-sooner

    I’d rather drink coconut water which is better than any sports drink and works really well for me, also it’s identical to human blood plasma. They used it in WWII when IV solution was in short supply. I realize I’ll be drinking it, not having it injected, of course. My husband was planning on bringing coconut waters to my hospital room anyway. We found that Wholefoods bottled it fresh for me when we were down there before and thought I was having surgery then.

    The above article states: ” Opioid pain medications have largely been replaced with non-narcotic medications such as acetaminophen.” I’m all for that. 🙂

    Then the article states: “Patients are required to get out of bed and move around. Patients need to be out of bed for six hours on the first day following surgery and eight hours on the second day.”

    I am totally fine with having to get up and move around even though I’m already in chronic pain and mostly bedridden, because with my particular illnesses, exercise and eating well helps me feel better, however I may not be able to be out of bed for six to eight hours, but I’m willing to try. I may just have to take more breaks and lie down at times, just like I’ve had to do for the past 14 years. We’re bringing my exercise ball and I can sometimes sit on that for a few hours at a time. It’s the largest ball they make and half deflated, which is why I do so well on it.

    Another important key to this protocol is that it allows you to eat sooner, and I need to eat every few hours or I start feeling very sick, plus I have low blood sugar, and I get worse and worse the longer I go without eating, so this seems like a definite benefit for me.

    This article is making me feel very optimistic. I do great with natural remedies. I hope I can do this. Please tell me if you think I can. However, Dr. Aliabadi said she thought I should be in the hospital for six days, and one reason I think that would be good for me is because we are coming in from out of town, and so far, all the hotel beds are very high and difficult for me to climb into. The beds at Serenity have memory foam mattresses and those set off my fibro when I try to move on them in any way, so a hospital bed would probably be best for me while I recover.

    Also, I was reading that sometimes other types of meds are given during or after surgery, and I cannot handle Neurontin or antidepressants.

    And, I was wondering if I’m going to be having general anesthesia now, or if I’m going to be awake with an epidural during surgery.

  • drtowfigh

    Moderator
    October 13, 2014 at 3:55 am

    Surgery with Chronic Fatigue Immune Dysfunction

    Of course.
    So glad things are movingbalongvtowards a cure to your pain.
    Looking forward to your operation.

  • bayblu

    Member
    September 30, 2014 at 7:02 am

    Surgery with Chronic Fatigue Immune Dysfunction

    Thank YOU, Dr. Towfigh. I’m back home now, but I’ll be back down there for surgery soon, I hope. I really appreciate your help by recommending the high-resolution, dynamic MRI with the valsalvic maneuver. When I came down to see you, I thought I just had a small right-sided inguinal hernia, but the MRI showed 2 femoral hernias, one on each side, which are the kind that are most likely to strangulate, and the biggest surprise is that I have a huge uterine fibroid that ha stretched my uterus up into my liver. It’s now the size it would be in an 8 month pregnancy.

    All of my doctors completely missed diagnosing any of this in me. A couple of them blamed me for gaining so much weight, and one thought that my hernia pain was from nerves stemming from my sprained low back.

    My husband and I are very grateful to finally have a diagnosis that explains so many of my odd symptoms. In 2008 I went to my doctor because I was concerned about a new lump that had grown under my left rib cage. She couldn’t find it but she palpated the spot I told her it was at, and then she explained to me that the only thing they could do would be exploratory surgery to see what was wrong, and that once you cut the abdomen open, a whole host of health problems can emerge, so the best thing to do was to just ignore it.

    A few years later, I noticed another lump under my right ribcage, and I did what she said, I ignored it. It is possible that those lumps are just lipomas from my fibromyalgia, but now I wonder if they’re from the fibroids. .

    During the last few years my gynecologist was just amazed at how big and hard my tummy keeps getting. He would palpate it in wonder and look very perplexed. He said he was amazed at how hard my tummy is.

    Over the last 6 years, I have been in more and more pain, especially when I lean into the counter or anything presses on my belly, as I’m going about my day. I kept thinking it was just the fibro, and maybe it is, but maybe it’s part of the fibroid.

    I also have this odd-shaped, pooch-like thing at the top of my tummy when I lay back on my exercise ball to do crunches. I showed it to my husband last year, and said I thought I should bring my ball to the doctors and show it to them, but he said I shouldn’t, so I didn’t. I’m curious to know now if that’s part of the endo. I know my body, and I’ve done crunches all my life – my belly never had that extra pooch-like thing before.

    I really want to thank you for getting me right in to see Dr. Aliabadi, the gynecologist, the next morning after my MRI. She gave me real validation for my health situation instead of shaming and blaming me for gaining so much weight. I can’t tell you what a relief that was.

    I’m grateful that you were both so understanding about me needing to cancel my surgery at the last minute this time. I need time to get my aftercare in place because, this is a whole new ballgame, and with my disabling chronic illnesses, there’s a lot we have to plan for.

    My husband and I visited Serenity when we were down there and we think they can probably meet my needs, but we’ll definitely have to modify the bed in some way. I can’t handle memory foam with my fibro and low back pain, but maybe we can put some kind of mattress padding on it. They were very willing to try to make it work for me, so I’ll be calling them and working that out as soon as I’m able, and I’ll be calling your office and Dr. Aliabadi’s as well.

  • drtowfigh

    Moderator
    September 23, 2014 at 5:51 am

    Surgery with Chronic Fatigue Immune Dysfunction

    Such a pleasure to have seen you today. Hope to be able to help you.

  • bayblu

    Member
    September 1, 2014 at 11:35 pm

    Surgery with Chronic Fatigue Immune Dysfunction

    Thank you so much for your reply to my posts, Dr. Towfigh. I am relieved that you understand the complexities of operating on people who suffer from chonic illnesses like mine, and I am truly grateful. I need to explain, although you likely already know, that I do not appear to be as sick or in as much pain as I really am. I keep a sunny disposition as much as possible. I stay as upbeat and as positive as I can, and I look much younger than my age, and I look and present well, according to others. Also, once I’m out and about, and especially around other people, my adrenaline shoots through the roof, and I become super-energized and chatty. This often ruins my credibility, but I just keep chuggin’ along…what else can I do?

    I look forward to meeting you as well. Doctors like you are rare, precious gems in this world.

  • drtowfigh

    Moderator
    August 31, 2014 at 10:50 pm

    Surgery with Chronic Fatigue Immune Dysfunction

    Thank you for your post and details and links provided.

    Chronic fatigue and fibromyalgia are certainly under appreciated as an important syndrome that should be treated with caution and quite differently than other diseases. The possibility of imparting chronic pain on such a patient after an operation is very high.

    I am experienced with this and so I am keenly aware. We can discuss your possible diagnosis and treatment plan when we meet. I look forward to seeing you.

    In the meantime, I hope others can get information from your post to help them with their peri operative care.

  • bayblu

    Member
    August 16, 2014 at 3:00 am

    Surgery with Chronic Fatigue Immune Dysfunction

    Oh yeah, after rereading the first blog and comments, I think I would do better with about a liter of saline pre-op and probably one liter of saline post-op. One of the commenters below the article stated that we shouldn’t have too much saline either. I do know that many people with CFS/ME feel much better after being given some saline, even without surgery.

    I just found the protocol I’ve seen for years about surgery for us. It says:

    “Anesthesia has adversely affected patients with CFIDS. Some anesthesiologists have had success blocking the sodium channel during anesthesia for CFIDS/ME patients.”

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

    That’s the protocol that patients with ME have said for decades has helped them.

    Just read this comment from the about.com article in the post above:
    ” The tip about the IV arm is so true, my arm pained me for over a week and kept me awake nights – just one of the many things I would have done differenty had I known.” – Sue

    So I think that’s probably important for me too. Sigh….

    I also have some questions:

    Questions:

    1. Will I be able to be in a lounge-chair position while they perform surgery on me?

    2. Will I be able to be in a lounge-chair position during recovery? I do not do well at all when lying flat.

    When I say “lounge chair”, I really mean, I need the back of the bed raised some, so my head is elevated from the rest of my body.

    3. Can I recuperate for longer than a few hours if I need to?

    4. Am I having local or general anesthesia? (I believe I’d do much better with general – see below)

    Sue Newell says:
    “I have spent 6 years slowly improving from debilitating fibromyalgia Two weeks ago I had a femeral hernia repair under local anaesthetic. The operation was not pain free and I had to be repeatedly injected. I found this traumatic and although the actual surgery has been successful I have regressed in terms of my fybromyalgia. It has been a nasty shock. I think I should have been more aware of the effects that the surgery has had on me!”

    http://chronicfatigue.about.com/b/2011/04/18/facing-surgery-with-fibromyalgia-chronic-fatigue-syndrome.htm

    Sorry my situation is so complex, but I noticed on the about.com link that they suggest monitoring my magnesium and potassium for surgery because of the Fibromyalgia, but I don’t think I can handle them giving me magnesium and maybe not potassium either, because of my severe life-long IBS that has been set off by magnesium supplements, and I’m guessing potassium may be bad for me as well. I can only handle substances like that in foods and teas.

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