Does Anyone Know Stats Or Personal Experiences

    • Anonymous
      September 22, 2010 at 6:09 pm

      Does anyone know stats or personal experiences with having a relapse of GBS or other complications after having surgury ?
      I asked my neuro & he said I can only be under general for 1 hour.
      And I was wondering about any good experiences as well , & if anyone else had a time limit for general anesthesia.

    • September 22, 2010 at 7:36 pm

      Not sure about a time limit personally, but I did have issues AFTER surgery in recovery room. Blood pressure would not stay up no matter what they did, and it dropped so low at one point it was a “coma/death” situation. Make sure EVERYONE who comes into contact with you at any point during your pre op and day of surgery knows details about your condition and any sensitivities to drugs that you are aware of, sleeping issues, breathing issues, etc. Have a meeting with the surgeon BEFORE you are to go in so you can cover all of the bases. This is the first time i have heard of limitation of being “under”….and if it is true it is very good info to have on hand.

      My surgeon said I was fine during surgery, no issues and was very surprised and concerned when he came to check on me in recovery to hear what was going on. So things can still occur even after being awake. Others have had no issues at all, as with everything and gbs/cidp, things vary with each person. Also, I was worried about a relapse as well but tried not to worry too much because that can make things worse while healing. I was glad when my “4 weeks” was up and nothing happened except a minor flare of residuals, but a lot was going on in my life at that time so that was no surprise.

    • Anonymous
      September 23, 2010 at 12:27 am

      I’m not sure why the time limit was given. I have had several surgeries since being dx with CIDP 7 years ago. All happened to be about an hour, but I had no relapse at all.

      Recovered from the anesthesia and the surgeries well.

      I was warned about potential relapses though.

    • Anonymous
      September 23, 2010 at 7:46 am

      [SIZE=”2″][COLOR=”Teal”]Good morning.
      I had a triple bi-pass and was under 5-6 hours and had no problems.I did make sure everyone knew about my GBS and the antithsiaoligst (Wrong)She said she had to change one of the drugs she planned to use. Once you are under they us mostley Nitrusoxide to keep you asleep. (called laughing gas)[/COLOR][/SIZE]I would probe deeper why the 1 hr max. You are in my prayers. Lakoda

    • Anonymous
      September 23, 2010 at 4:54 pm

      I was thinking of asking my dr about a surgical procedure to eliminate a problem I’ve been having. My aunt reminded me about possible reaccurences. So she suggested I put this on to get more info. I had a severe case a nearly died, therefore i’m very concerned about having a relasp.I’m still going to talk with my dr ,but I don’t know about a surgical option, I think I’ll see what they think. Howevere the more info I have the more educated I’ll be.
      Are you always at risk for the rest of your life after having GBS ? I was left with disabilities , that this is how I’ll be.

    • September 23, 2010 at 6:17 pm

      They say that a second time with GBS may not be the same as the first. Less severe, more severe, the same, they of course can’t predict what it would be like or if it would even happen at all. The chances of a relapse are small, like 3% or so…but I figure the chance is larger considering the number of people who actually get it in the first place, but that is just me. If the number of people that possibly get GBS is 1000 per 100,000 (1 in 100,000) (still seems like it should be higher than that) then the risk of relapse rate is 30 of those people. Some get it more than twice. Not trying to scare anyone, just stating what I have ‘learned’ so far.
      But, you may also have to factor in the simple cold, the stomach virus, etc. Come cold and flu season, I am armed with bleach and lysol and clean EVERYTHING thoroughly. Plus I am careful of where I go and definitely use those wipes at the store, wiping the entire cart, and my hands while shopping and wash after I get home. Can’t be too thorough because there are some nasty scary bugs going around now, and our bodies do need to set up their own defensive lines. Just be mindful but dont let it drive you crazy nor let it become an obsession.
      Oh be sure that you insist anyone who comes into contact with you at the hospital, even if is seems innocent, wash their hands in front of you! It isn’t rude to ask, it is about your health.

    • Anonymous
      September 23, 2010 at 6:42 pm

      Quickly [in 30 seconds or less-docs have short attention spans in OR’s] imply that you have a serious demeyelinating condition that affects ALL peripheral nervous systems. Different from MS only in that MS demeyelinates in the brain. MS somehow? Docs can really relate to, not sure why, other than there are either more people affected, or their advocacy is louder and stronger.
      MS folks have suffered long and hard from anathestics, and, have done a lot of research along the way to find anasthetics that cause less harm in the long run. And they’ve been successful in this area.
      IF you do see the lightbulb? You are going to be treated super-well. If not, cross your fingers?
      I’ve had five+ hospital surgeries since I’ve gotten CIDP [can’t remember them all]. Three of these required overnight or extended hospital stays. I’ve come out of them all quite well tho. No complications on any so far!
      IF you are on IVIG, try and schedule the surgery about 10 days after your last infusion, that way you get full benefit of the IG for YOU and you’ve still got enough IG to help keep complications down and heal faster.
      I truly hope this helps!
      PS: 3 of those surgeries lasted 3-6 hours, with little or no complications to speak of.
      Good luck with yours!

    • Anonymous
      October 12, 2010 at 9:16 pm

      thanks for your imput. talked to dr. & i decieded to go with a less evasive proceedure. i’ll be awake but sedated enough to be comfortable..
      let you know how it goes. probably won’t be till nov. sometime.