ARGH! Surgery fears and questions

Hi Lori, sorry to hear about your news. I have read that some patients recieve ivig immediately following surgery as a precaution. Also, is there any chance you could get twighlight? Will it be done laproscopically? My sister in-law just had this surgery 9 weeks ago, her cyst was the size of a softball and she had other complications, but is now recovered and back to work. She did rest and had to recieve iv antibiotics for an infection. Her other complications were a hysterectomy as a result of other issues. Had she just had the cyst removed she felt it would have been a much easier recovery. Good luck to you and I will say a prayer for you! Dawn Kevies mom 😮

lori,

make sure you personally tell ALL the docs involved that you have gbs & are not allowed to have lidocaine or any of its derivatives. take care. be well.

gene gbs 8-99
in numbers there is strength

I just had a D & C and I was concerned too and I told the Doctors and the anesthesiologist about the GBS and the lidocaine. They gave me a hard time at first….then called back after I guess they checked the internet LOL and canceled my surgery. I had to go get a release from my Neuro. He told me a few things that backed up what we have been taught here and in the release he told them something different. I was upset but everything went fine. Life is good! 😎

Here are some things that I have been told by doctors.

-I asked about the lidocaine and presented my doc with a study that was on this forum. He read it consulted w/ other neuros, anesth. they all came to the conclusion that it is one study and held no importance to it. Kevin has had lidocaine 6 times for ingrown toe nails and every time you go for an l/p they use lidocaine. Dental work as well I believe. There was another drug that was mentioned to replace it in the study I asked my docs and they said that drug was taken off market in us because of its side affects. Incidentally, the study was done in Germany I believe and that did not seem to impress the neuro regarding its relevance. Also, I believe some of the children on this site get lidocaine before ivig. Dell, I believe. This issue was brought up with Dell a few months ago, maybe his mom could give you better info regarding her search.

– I have no study to offer you regarding this comment, but two of our doctors did offer this as a reason surgery has a link to gbs. Perhaps when you get anesthesia and basically shut off the body, your immune system when turned back on gets confused when reconfigurating. Kind of like rebooting a computer. Being that you have gbs not cidp, perhaps it should not be an issue? Maybe inquire if it could turn your gbs into cidp?

– The way I see it, you have to have the cyst removed. Sometimes they burst and resolve themselves, but you run the risk of infection. I’m sure your doctor feels this is the best course for you or he would not put you through it.

– Twighlight is when you are given a local to the area of surgery and also give additional med to keep you totaly out of it but not all the way out. 16 weeks ago I had a foot surgery w/ twighlight, I do not remember anything after getting on the table. I do not know if the abdomen being filled w/air has anything to do w/ why you cannot have twighlight but ask, what could it hurt?

– I hope I gave you some info to look into that might help! I know that whatever you have done it will be ok, you are aware of your situation, your doctors are as well and you have God on your side! All of us too! Good luck in your decision! Love Dawn Kevies mom

Lori,

I have to admit to not reading everyones posts before replying (I am so exhausted today). I have been under general anesthesia a couple of times since GBS i.e. something similar to your soon to be surgery and my c-section. I have also had lidocaine a number of times, but have not been adversly effected at all by any of them. I totally understand your concern, and I hate the fear that we sometimes have to live with. Sometimes I try and burry my head, or try to rationalize how slight the possiblity is that something may happen, but it doesnt help most times, its just always in the back of my mind!

I am also concerned about surgery. Yesterday a spine surgeon told me I needed 3 discs worked on and it would be about a 3 month recovery from this surgery. I haven’t recovered from the GBS yet. He seemed very confident that he could fix my pain and I’m still getting a IVig the first monday of each month as a precautionary . I really know these doctors are smart but geeeezzzz. I’m trying to decide what I’m going to do. They said as any doctor would ” you can live with it or fix it” then they left it up to me. I’m so confused, sometimes I still don’t know what day it is ,much less make important decisions like this.
Confused