Post GBS Surgery?

    • Anonymous
      July 9, 2007 at 10:23 am

      Most of you know my story. I have recovered very well except most of the usual residuals , tingling ,itching,numbness,burning,sparking……etc. I’m trying to rehab so I can get my stamina back and build my strength so I can go back to work. My back has alot of pain that hinders my rehabing at my house aka treadmill and weight machine. I can’t stand very long before I have sit down and rest or take meds. There is a Spine Dr. that wants to do SURGERY on my lower spine and do a fusion of 4 vertabre and I’m really wondering if or how much of a risk there is for a GBS reoccuring due to the major procedure. I WANT to go back to work. I already have total disability and am getting my checks etc. My employer will hold my position until……. I am ready to return. I would really like some opinions on this because I do not want to come out of surgery with a vent.
      Thanks so much

    • Anonymous
      July 9, 2007 at 12:06 pm

      Nate has an orthopedic doc that is treating his equinovarus foot deformity. He told us that normally he would have repaired that deformity surgically but he will not take the risk of anesthesia with a post GBS patient.
      Anesthesia is known to have a large risk of relapse of your GBS, that being why Nate’s ortho will not put him under.
      He has had Nate fitted with an AFO with an ankle hinge to try to straighten nate’s ankle and foot.
      He knows it will take a long time to do that but for Nate, it is the only option.
      So far nate’s foot is starting to respond some. His heel is almost down now but the other deformities are still mostly the same.
      I would discuss the possibility of a relapse with your doctor before entering into any decision.
      Trudy, natesmom

    • Anonymous
      July 9, 2007 at 3:08 pm

      [QUOTE]Anesthesia is known to have a large risk of relapse of your GBS[/QUOTE]

      Where did you hear this from?? I am concerned now as I am supposed to have a gastroscopy in 2 weeks, if this is the case, I won’t do it. I had a colonoscopy in january, and afterwards, I thought I was off balance for a few weeks, and feeling crappy. hmmmmmmm………….. I wonder if they can do the gastro w/mri instead??

    • Anonymous
      July 9, 2007 at 5:06 pm

      I have/had a very severe case of CIDP & have been put under 3 times since my initial attack with no problems at all. I have also had extensive dental work done without any adverse consequences. But like everything else, I supose we are all different. I wanted an elective surgery done (breast reduction) before my husband retired, but he wouldn’t let me take the chance. I wish I would have now, as Medicare if now my primary. I am too borderline for me to qualify for that now.

    • Anonymous
      July 9, 2007 at 6:02 pm

      I was told there was a large risk by both Nate’s Neurologists and Nate’s Orthopedic.
      I have read it also before but I have not been able to find the website.
      I will post it when I find it.
      Trudy, natesmom

    • Anonymous
      July 9, 2007 at 6:38 pm

      Tim, have you looked into other means of relief for the back pain/problems? I have a lower back problem, I was getting injections when I first became paralyzed, it was my last chance before going under the knife. It didn’t help in the long run(the pain management injections) so I haven’t done anything as of yet. I have seen information about a non surgical treatment for all types of back problems, there are some drs who do it all across the country, it involves decompressing the spine. I will get the name of it and let you know in a pm. I wouldn’t go through the surgery for a few reasons, relapse possibilities are higher, surgery mess ups not worth it, and there is no gaurantee that the surgery will make that big of an improvement on your life afterwards. and then there is always the whoops-it didn’t work, chance. Once it is done there is no repairing or replacing if it goes bad. My surgeon wanted all other treatments tried before he would even consider to do a surgery that involved on someone younger then him, he wouldn’t rush into a surgery just because he could. Check out all avenues before committing to a surgery of that high of an importance-without a back you have nothing to stand on. Take care, hope things around there are going good for you and your family.

    • Anonymous
      July 9, 2007 at 10:14 pm

      about: 1-getting a second opinion, or a third or even fourth if necessary; and about 2- trying most other options before surgery.
      GBS and CIDP are mostly acquired auto-immune reactions [possibly with hereditary features, but most docs don’t test that aspect, just treat]. Treatment is still the same, the precautions are as well. You could probably find a lot of anathesia reaction documentation about the demeyelination aspect for MS sufferers…for them the nerves die in the brain, for us, ‘merely’ in the rest of the nerve system.

      BTW: I’ve successfully undergone two surgeries and two ‘test procedures’ under general…I just let them know about the demeyelinating thing first…I believe they treated me as they would one with MS…I Am fine for all of it…I think?
      Back surgery, tho, is usually a very long surgical procedure…the longer you are ‘out’ the higher the risks..I believe.

    • Anonymous
      July 9, 2007 at 10:46 pm

      Here is an article about a woman w/gbs that had surgery (there’s lots more to her story).


      She learned that surgery can have a severe effect for those who have relapsing/recurring gbs. I know you do not, but I also agree w/Angel/Cheryl to be very careful. Research all your options – mabe with a neuro (as opposed to a second opinion from another surgeon).

      Whatever the decision, I wish you all the best in your recovery.


    • Anonymous
      July 10, 2007 at 1:13 am

      I think I would be concerned about surgery because of the anesthesia. See if you can get a second opinion maybe from a pain management doctor. I wasn’t able to go back to work and am on disability since October 2004. Fortunately for me I hated my job and the people I had to work with.

      Cara, I also had a colonoscopy in January with just the opposite effect. In fact my wife was having problems with her contacts and I ended up driving home.

      Good luck I hope it works out well for you and your back pain gets better from what ever method you choose

    • Anonymous
      July 10, 2007 at 10:05 pm


      Could you please send Ben your phone number again? You two seem to have so many conditions in common, and I think it would help both of you to talk. He’s been sleeping a lot these days, but maybe he can call whenever he wakes up again. His e-mail is: [email][/email].



    • Anonymous
      July 11, 2007 at 8:11 am

      I also have a back problem. My Neuroligist said NO SURGERY. She said try deep massage therpy 1st. I have started that and in one session I feel 50% better. The therpist did deep tissue massage and it is very painful. but in the end it is worth the pain. I will see her once a week. My 2 nd choice is a cordizone shot. Too many doctors want to cut too fast. alot of people that have had back surgery have come back hurting more.I didn’t trust Chyropractors till I went to one. What a relief. you have many options. For me any type of surgery has to be cleared by my Neuroligist. Remember your Neuroligist knows more about you than most doctors. She says yes I do it she says no forget it (Steve)

    • Anonymous
      July 11, 2007 at 9:23 am

      I talked to my ex-wife and she said no way (obtw she works for my neuro). He called me last night and is getting me in for a second opinion today.He informed me that with my immune system I do not need any foreign things in my body. He also said it was irreversable and to cancel my appointment and we would look for other options. He told me he had seen disasters from this kind of surgery. Geeeeeezzzzzzzzzzzz I hate the pain !!! I’m a DA and all I can rely on is you all and my neuro.I would hate to have the surgery and it not work and come out with a vent again. Thanks for all the opinions and responses.

    • Anonymous
      July 11, 2007 at 10:39 pm

      My GBS was at its worst at the same time as yours. October 10 I fell down because my legs gave out and I had to crawl from then on. You did not mention if your four vertebrae NEED to be fused. Is there something wrong with them? IF not, I would leave that as a very last resort. I would not even get novocaine until I totally recovered. I think most of us have that fear of going back. There is a book written by the man who helped the golfer, Jack Nicklaus, get over his severe back problems. I can’t think of his name but I photocopied some of his back remedies. Theone I use the most is: lie on the floor with your legs on a table or chair making right angles – back/legs make a 90 degree angle and knees making a right angle. I stay like that for a half hour or more and it gives relief. I was lucky to skip most of the pain of GBS and I think that is due to my supplements. I give the body what it needs and let it do the healing. Perhaps MSM might help since it takes away pain from arthritis. I find when I cut back on my supplements, pain starts. I do not want to waste time here, so if you are interested in trying any of this, let me know. You just might be overloading your body in other ways like diet. When you fix the little things, the rest of the other systems in the body come into homeostasis/balance. I might ask you to describe your fingernails to me, or where in your feet/hands you have pain….many times the body is screaming to us what is wrong and we ignore it.

    • Anonymous
      July 12, 2007 at 3:06 pm

      I took my neurologists advice (as usual) and talked to my pain managment doctor and told him my reservations about all of this. He advised me to not take the discogram until it was 100% surgery time and if I even needed it then well ok. My neuro got me in to see a Neuro and Spine Surgeon that he said was the best available . I took my MRI disc and laptop and had it set up for him when he came in to save time. He still wanted X-Ray’s . He thinks intensive PT,of several types, he actually called a PT in there and showed her what he wanted to work on. He wants me to be as far away from my GBS in time as possible, before we even think about surgery. It seems I was born with a problem in my spine thats grown to cause problems. My sacrum has moved forward 1/2″ and there are 4 discs above that have paid a price over the years.
      As for my finger nails??? the only time I’ve had finger nails is when I was paralized in the CCU back in October (nail biter). My hands get numb and tingle and itch and burn , my feet do the same thing. Sometimes it’s just one and other times it’s all four.I can’t stand or sit upright for any length of time at all. If I’m sitting I have to shift from one side to the other and the same with standing. I have a foot drag that just happens at times and my balance is semi crossing the yellow line if you understand that. If I’m walking down a long hall I usually have to stop and put my back on the wall and extend my feet out to get relief.
      I start the PT Tuesday and it is in a brand new building they are moving into Friday. One good thing is (she’s kinda cute and it could have been a guy named Ahnold) lol. I’m willing to do anything to get better . It’s kinda like when I was working as a Diesel Mechanic , in order to repair something you always start with the less invasive and easiest thing before doing a total overhaul. Start trying to fix the small things first and see if it helps.
      Once again THANKS

    • Anonymous
      July 12, 2007 at 8:56 pm

      Tim, At least you got a cute pt, that makes all the difference in the world! 😉

    • Anonymous
      July 13, 2007 at 9:02 am

      Tim, Look into the DRX9000.:)

    • Anonymous
      July 14, 2007 at 8:40 am

      I had ‘minor’ vein surgery 2 1/2 years after dx with GBS. Had always had the risiduals and the surgeon felt there wouldn’t be any problem with the anesthesia. WRONG! Another case of an uninformed Dr. I was down for 10 days and back to PT for 3 months.
      Because I have continued to loose weight since the initial onset of GBS, my primary care Dr. suggested a series of gastric tests. I had some real concerns with a colonoscopy and so did this Dr. He said he would not do it or suggest it. We’ll take pictures first and any invasive procedure should be a last result.
      I’ve done a lot of reading and it does seem to follow that many of us have a hard time coming back after any invasive procedure.
      Take care and beware,

    • Anonymous
      July 14, 2007 at 9:32 pm

      Hmmmmm that sounds like a machine for two?;)

    • Anonymous
      July 15, 2007 at 2:11 am

      Thray and all,

      Thank you so much for this “informative” thread. I will most likely be encouraged by my primary Dr. to have ANOTHER colonoscopy performed soon, since my last was done 4 or 5 years ago. (Before GBS). But, now, I am VERY skeptical after reading these posts!!!! 😮

      I think I will seek the MRI method instead, don’t ya think??? Thank you for the “heads up” on the anesthesia threat to a relapse. I am like you Tim,…….don’t really look forward to coming out of the induced coma with a vent in my mouth!!!:eek: Wow, what a “permanent” scar this GBS has inflicted on all of us!! Aren’t we the lucky ones .

      God bless you all,
      Love ya,


    • Anonymous
      July 15, 2007 at 1:16 pm

      I have found that there are still a lot of doctors out there that do not know enough about GBS to keep GBS patients safe.
      Its scary.
      We have to be very careful how we or our family members are treated.
      I have heard some really ridiculous things come out of doctors mouths that it makes me want to spread the info about what GBS is to as many people as I can…….and I do.
      Anyone who asks what happened to Nate, I tell them as much as I can in as short a time as I can. Hopefully they go look it up and learn more.
      Trudy, natesmom

    • Anonymous
      July 15, 2007 at 2:24 pm

      It is a neat, non invasive machine. You lay on it, can even fall asleep during the treatment, it in not soo many words decompresses the spine. i see it as a stretching machine:D it doesn’t hurt, is very safe and only drs trained to use it can practice with it on patients. i haven’t tried it yet, that would be the next step after my University visits(if the insurance will cover it) The injections only worked for about 24 hours for me, i had 2 out of 3(thats all the dr would do) was supposed to get the last one on the day i ended up paralyzed in 05. so this machine would be my very last try at a treatment for my back. Have you tried hanging in a pool? it can produce a similar effect as a decompression machine-only it might take alittle longer to get the same relief. just a thought. before gbs/cidp i use to go to the park and hang upside down on the bars, it felt good just to relax for a while and let gravity do the work. i can’t do the bars now but i still like to play!;)

    • Anonymous
      July 15, 2007 at 3:01 pm

      I used to have a chiropractor that had a setup in his office for people to hang upside down. He did it himself.
      I never tried it but he said it helped his back feel much better when it was bothering him.
      He had some of his patients use it too to decompress their spines.
      Nothing like a non-invasive, simple, no extra charge method that works.

    • Anonymous
      July 18, 2007 at 9:11 am

      Well I went and saw the Surgeon my Neuro advised and he said I was too close to my onset of GBS. He want to do more therapy on my back so it will be stronger to rehab better. He’s saying at least 2 years. I guess I might as well get used to being retired. Retired at 48……maybe not all that bad.?!hmmmm,It just seems really strange because I was planning on working much longer but I’m really not the (Planner). I’m sure more will be revealed and there will be something in store for me to do or help someone else . I’m going to check on a few voluntering spots that may be able to use me.
      Thanks to all of you for your opinions and advice!