Surgery suggestions?

    • Anonymous
      August 3, 2008 at 1:38 am


      I had GBS in 2002, approximately 2 weeks after some minor surgery. GBS began for me with progressively SEVERE pain in my hips, my arms and one vocal chord were paralyzed, and my legs were partially paralyzed.

      The neurologist at Johns Hopkins who finally diagnosed my GBS said there was no way to know if my GBS was triggered by the surgery, although surgery is known to be one trigger for GBS.

      Approximately 10 years previously, I had major surgery, and awoke from the anesthesia with SEVERE pain in my neck and shoulders (completely unrelated to the area where I had the surgery). Within 24 hrs. I also had partial paralysis of my arms, and some weakness in both legs. The paralysis and weakness resolved within 2 weeks, but it took nearly 2 years for the pain to go away completely. Despite lots of tests (xray, CT scan, MRI, blood tests), none of my doctors could find what caused these problems.

      As I look back, I notice similarities between the two incidents. I can’t help wondering if maybe the first time was undiagnosed GBS. The 2nd incidence was more severe, so possibly easier to diagnose. I also have to wonder if both incidences were triggered by surgery.

      If surgery was indeed the trigger for 2 bouts of GBS, is there anything I can do to help prevent this from happening again, if I need surgery in the future?

      Has anyone else here had GBS triggered by surgery? If so, have they had additional surgery later? What was the result? What type of anesthesia was used?

      I’d appreciate any advice on this, from anyone has with knowledge or experience about it.


    • Anonymous
      August 3, 2008 at 2:47 am


      I contracted GBS on Sept. 3, 2004. Totally paralyzed, etc……….recovered very well, thankfully ๐Ÿ™‚

      I had lung surgery in January of this year……………I informed Everyone on the surgical team of my previous GBS experience……………..everything went well.
      So, not to worry…. {too much…:)}….about surgery after having GBS. Just make sure everybody is informed, especially the Anesthesiologist.


    • Anonymous
      August 3, 2008 at 4:53 pm

      Hi! I have not been diagnosed with GBS but CIDP. Funny you mentioned surgery though. My first attack on my nervous system was during a nerve biopsy and I got the attack 2 weeks after my surgery. But have had other attacks. The last attack I had was after my surgery in April. I think the best thing is to mention to the doctors and surgical team about your illness so they can be on the watch and start treatments. It is a scary thing to think about especially when you have it happen and are afraid it happens again!

    • Anonymous
      August 3, 2008 at 5:26 pm

      I had a triple bi-pass and was under for over 6 hours. as has been mention let everyone know you have GBS or CIDP. I always asked after I told someone if they knew what it is. My anesthesiaoligist was very well versed in my GBS and she had changed one of the drugs she uses. I feel with surgery most of us do not have choices and we have to have the surgery. I turn it all over to the Great Spirit (God). I do know I have been told by several doctors not to take any immune shots. especially the ones useing eggs to make the serium. If someone on your surgical team doesn’t know about GBS or CIDP then make sure they know before your surgery.May Gods blessings be with you (Steve)

    • Anonymous
      August 3, 2008 at 10:35 pm

      Hi Suzanne, Now that you mentioned it, I had unexplained problems after my first knee surgery in 04. I had no problems except complete numbness of my abdomen, from just above the navel down to my hips/pelvis area, after my total hyst/ovarian cancer surgery. After my second knee surgery I had no problems(different dr then 1st). Then after my 3rd knee surgery, I had problems with an infection in the upper thigh and was put on an antibiotic and 6 days later I woke up after 2 hours of sleep, paralyzed from the shoulders down, with facial numbness and tongue numbness.

      I’ll have to look back over my records to see what anest was used.

      I did have an allergic reaction during 3 of the 4 surgeries, the only one not having any problems was the 2nd knee surgery. Which is rather an interesting piece of the puzzle for me.:eek: Thanks for the memory trigger there, Suzanne–Good question! Take Care.

    • Anonymous
      August 5, 2008 at 12:41 am


      I know what you are saying …… Patients who ‘come down’ with GBS because of a shot, sometimes get GBS again when having the same shot (flu or tentinis etc), so doc’s often say to stay away from shots, period, because of they may very well get GBS when having another shot again. (Boy, I’m sure there was an easier way of saying that!).

      You are worried that since you very well likely came down with GBS the pervious 2 times when having surgery, you could possibly get it again if having surgery. I think it was Dr. Steinberg (burg?), who said something along these lines …… If a certain incident has brought about GBS more than once, he certainly would be very wary of having done again – he was speaking about a tetinis shot and a patient who had it 3 times and contracted GBS all 3 times. ………….

      So I guess I’m saying that honestly, [B]I would worry[/B] because if the first case was GBS, then there could very well be something that is triggered by surgery. [I]I truly believe that your case could very well be different from those of us who contracted GBS another way and have had surgery in the past.[/I] Sorry SuzyQ, but a pattern is a pattern and one can never know if it will continue or not.

    • Anonymous
      August 5, 2008 at 8:30 pm

      I agree 100% with what Ali said and ditto to avoid surgery if at all possible. Why risk it unless absolutely necessary? If you have to have surgery, think and talk to the doctors about possibly small doses of steroids or another way to prevent any burst of inflammation. I would guess that this is the difference in AngelSecondClass22699. Allergic reactions are inflammatory reactions and if you are prone to autoimmune disease (which we all are now shown to be because we had one), an inflammation can precipitate it. In the same way that an immunization may not itself be the cause of the GBS, but in people prone to get one, when their immune system starts jumping up and down trying to react to the immunization (which are made to be very reactive), there can be cross stimulation of the immune response to myelin. (Of course, some people may react exactly to and only to a part of the immunization in combination with their own identifying proteins (HLA) such that their immune system thinks the immunization peptide and HLA combination is the same as a myelin and HLA combination). My guess is that most people are the type that the immune system when rev’ed up a lot for any reason have cross-talk and that those specifically reacting to an immunization are much less common. So, most of us want to avoid things that rev up the immune system a lot.

      On another thread there are comments about reduction of the inflammatory response with vitamins and herbals. I have been reading a lot about this as well regarding medicines and vitamins. It seems that there are effective ways to calm down the immune system and get it to be less reactive. I am not sure any way will work for everyone.

      Just a note, the medical equivalent of an “old wives tale” is that propofol anesthesia is calmer and less “stressful” to the immune system and therefore, potentially less inflammatory. This is what we suggest when one of the children with an autoimmune disease has to have surgery. There are no trials to prove it to be the case and never will be for children since autoimmune disease is so rare in them. Suzanne, if I were you, and HAD to have surgery, I would advocate for a few days of mild doses of steroids around the time of the operation, having everything as optimized as possible to not result in additional stress, and have the anesthesiologists use propofol if they can. The argument against steroids are a potential impact on wound healing (probably not that great at mild doses) and potential increased risk of infection (but steroids really predispose more to infections needing good lymphocyte function–like viruses and funguses–not bacterial infections that need neutrophils and monocytes).

      WithHope for a cure for these diseases and peace in our immune systems.

    • Anonymous
      August 10, 2008 at 12:29 am


      GBS found me in 2000 after I came out of surgery. I thought maybe someone gave blood that had GBS and I got it that way. I then heard that some have gotten it from surgery.

      I went to Milwaukee because I thought I was having an attack of GBS again. She said that I never had it because I didn’t have any dead bodies of the virus they say causes some GBS. Well I kept after her and she finally yelled at me that I wasn’t having a relapse at least. She didn’t even know the different ways and kinds of GBS. She was suppose to be the best. Yeah right.

      I still think the doctors don’t want to listen to us. I do know this for sure…..It is called French Polio. My friend’s husband died from it and she told me that is what they told her it was. I also posted it here and it was confirmed. So if they say polio is back in another form, wouldn’t there be a panic?

      The residuals do get worse but slowly. I know that for sure and there was a thread about it. Quite a few people with many years of GBS experience made different comments and agreed. So keep up the exercises because “If you do use it you will loose it.” I was told by my therapy people and I believe it to be true because I can feel it when I don’t keep moving my musles in shape.

      Now I am having surgery on August 14 and I am scared to death. I have to have the surgery otherwise I would not even think of it.

      Good luck and fight back,

    • Anonymous
      August 10, 2008 at 12:39 am

      Judy, good luck with your surgery. I will pray that the last time was a one time event and you will sail through this one with flying colors!

    • Anonymous
      August 11, 2008 at 10:16 am

      I believe my CIDP was caused in part by surgery. I had surgery on my foot where I had a lump of scar tissue, four weeks after the surgery I developed foot drop on that side which progressed up my leg. They thought I had a trapped nerve from the first surgery so did a second surgery to free the supposed peroneal nerve entrapment and that led to further progression of numbess and total paralysis less than four months later. I don’t have GBS, I have CIDP and apparently a fairly slow version at that, but my Hopkins neuro said it [U]can [/U]be triggered by surgery though like Suzanne’s doctor he says it is [U]almost impossible [/U]to know at this point. I dislocated my left shoulder more than 100 times in the first 6 months since total paralysis and while it needs surgery to make it stable it’s just not worth the risk to me. I’ve been making do on my own for two years now and I’ve reclaimed about 40% of the arc of rotation without surgery. That’s enough, it’s functional, it doesn’t pop out of the joint anymore so I’m staying away from the quick fix.

      P.S. I’m not thinking it was the anesthesia that whacked my nerves out – I had a colonoscopy recently and while I was more tired than usual after I woke up I wasn’t any more numb and definately didn’t relapse but my neuro says avoid surgery if possible since it might have been a trigger. I also had a flu shot before the initial surgery and had bronchitis afterwards so it’s only one of a couple of possible triggers but the fact that I got MUCH worse after the second surgery is a pretty big red flag.

    • Anonymous
      August 18, 2008 at 1:33 am


      I posted not too long ago that I was going to have surgery and that I was not too secure in the thought.

      Thanks Janet for the encourgement and thoughtfulness with your post.

      I told the anestesiologist (sp) that I had GBS and he explained what he was going to do different. He made me feel very safe. I made it through the surgery and they found a tumor instead of a hernia. I am good and sound now and not so scared of surgery.

      I hope anyone else with essential surgery will talk to their doctor and find out what can be done. I let my surgeon know that if it happened again, that they should do the PP or IVIG right away so I wouldn’t be so disabled. That gave me a sense of security too.

      Good Luck,


    • Anonymous
      August 18, 2008 at 5:32 am

      I too had a bout and the hospital diagnosed me having a stroke after I had the Hepatitis B Vaccine. But the strange thing too was in 1984 during the birth of my first child, I had partial placenta previa and stayed in the hospital over a month.Then ended up having placenta previa and was rushed from my hospital bed into surgery. Lost 5 units of blood and had blood transfusion. After that transfusion, I was telling doctors back then that I thought I was rejecting the new blood.
      Seems like everytime I have something done, I get the CIDP attacks. But I too was diagnosed with Lupus. That disease in itself can be a major pain having. I hate being sick! I really do, but just try to except it and go on with what life I do have. Excepting it makes it easier to handle the disease.

    • Anonymous
      August 18, 2008 at 9:55 am

      Judy, I am so glad your surgery went well. And also impressed with your doctors. They sound very caring and did everything possible to make it a safe procedure for you. We have some good docs out there who really do try to meet our needs. Glad you had them on your side!

      I hope the tumor was not anything serious. Keep us posted as to how you are doing. Do you require any further testing or treatment? Hope not!:)

      Take care.

    • Anonymous
      August 18, 2008 at 2:47 pm

      It sounds like you have done well. Thank God! I had surgery in Dec. just a D&C but it is scarry. Especially not knowing with the GBS.
      So glad things have gone well. Good Luck and keep us informed.

    • Anonymous
      August 24, 2008 at 10:43 pm


      Thanks for the good wishes. The tumor was 6 by3 by2 cm. I don’t know what comparison of inches and centimeters, but they showed my with their hands and it was about a medium orange. It was benign, thank heaven. They couldn’t see it on the CT Scan but I could show them the outline when I pulled my arms up and held my breath. I am very greatful it wasn’t that other stuff.

      What I forgot to tell everyone, about an hour before surgery, they put an antibiotic with my IV in my arm. I don’t know how much they gave me, but it does make sense if you want to prevent the virus from attacking.

      Take care and breathing much better now,

    • Anonymous
      August 24, 2008 at 11:03 pm

      Judy, great news. Glad you are doing well and that it was not cancer or something. Take care.

    • Anonymous
      August 25, 2008 at 12:32 am glad things went well for you can relax. I am having a little minor surgery on tuesday, having an infusaport removed. One more step towards being normal again. ๐Ÿ˜€ Just a little nervous about having it done but am sure it will go fine.

    • Anonymous
      August 25, 2008 at 8:47 am

      Glad they found that tumor and removed it. That was a good sized one too. And am grateful that it was benign instead of cancerous. Sometimes those tumors like that can go into cancer too. So you were lucky to get it removed. Glad everything went well for you and hope you recover soon! Good luck

    • Anonymous
      August 25, 2008 at 1:42 pm

      Thank God all went well. You just hang in here & get your strength back, surgery takes it out of all of us. ๐Ÿ™‚

    • Anonymous
      August 27, 2008 at 6:57 pm


      I’m so glad to hear that your surgery went well, and that the tumor was benign!

      You mentioned that the anesthesiologist make some adjustments, after you told them you had GBS. Do you recall specifically what changes they made?


    • Anonymous
      August 27, 2008 at 7:14 pm


      Thanks for all the helpful and interesting replies to my question.

      I guess I was hoping that I didn’t need to really worry about having surgery in the future, if I need it. However, many of you make a good case for avoiding it. Ali, what you said about a pattern is very logical.

      Based on what some of you said, I can’t help but wonder, if there are many more “mild” cases of GBS that have eluded diagnosis, because

      1.GBS is rare, so doctors are not looking for it,

      2.because there are so many possible triggers that seem unrelated, and

      3.because the disease presents in so many different ways that the symptoms
      are often attributed to other things.

      Ironically, I was was very scared about the 1st surgery (because I had never had major surgery before), and had never even heard of GBS. Afterwards, since the docs couldn’t find a cause for my “mysterious” problems post surgery, and the actual healing from the surgery went quickly and easily, I wrote it off to a fluke.

      I was not scared in the least, before the minor surgery I had 10 years later. Ha! Sometimes what you don’t know, CAN hurt you! :rolleyes:


    • Anonymous
      August 29, 2008 at 1:34 pm

      My son Nate is in need of foot and ankle surgery and already both his Orthopedic Doctors have consulted with his Neurologist about not putting him under general anesthesia. They both agree that it is too risky to even try that.
      They both say that the risk of relapse is very high.
      Nate’s Orthopedic Surgeon will be using nerve blocks and sedation, not general anesthesia.
      It surprises me that ANY surgeon would say that surgery has nothing to do with relapse. That is very well known.
      Trudy, Natesmom

    • Anonymous
      August 29, 2008 at 9:38 pm

      I had surgery on tuesday. I had an infusa port removed. The doctor chose to just numb the area and cut away..needless to say I was a little freaked out but came thru it just fine. Didn’t ask why she chose to do it that way but kind of glad she did.

    • Anonymous
      September 2, 2008 at 12:34 am

      Thank you Linda, Janet, Cathy, Sherry, and Suzanne for all the warm thoughts and wishes. It does really help to have support.

      No I can’t remember what he said. I do remember he was going to use a plain anesthesia but the rest was in doctor talk. You know words we can’t understand. I think the main thing was the antibiotic ( part of what he said). Make sure the anesthesia doctors know and your surgeon know how to handle GBS. I told my doctor and the anesthesia doctor that I was really afraid of a return of GBS.

      For this operation she (my doctor) said I HAD to be put under and couldn’t use a block and such.

      I also, to be extra sure, drank Dannon Immunity Yogurt 2 weeks before my surgery and made sure to take 1000 mg of vitamin C each day and then I added another 1000 mg the 2 days before surgery. I wanted to have all bases covered.

      Thanks for starting this thread, It really has helped me and I hope your thread will make it a lot easier for others.


    • September 2, 2008 at 7:54 am

      bromelain helps with pain and healing. Either in supplement form or from pineapple. Heard the canned stuff is not as good as a real one though. Dole puts out an awesome product in the produce refrigerated section…its a pineapple that has been cored but not sliced. I tell ya, it is addicting! Dont take vitamin E or motrin a couple of weeks before your surgery.