New, so forgive me

March 9, 2007 at 1:58 pm

My mom was diagnosed with GBS almost 4 weeks ago. From what I’ve read on this thread, it sounds a lot like the axonal damage has happened to her too, but I’ve never heard her doctor say that word or use AMAN. I’ve been there almost every day, but I suppose I could have missed it somehow.
She is paralyzed up to her neck/upper shoulders. She has been on a vent since her 2nd day and was just given a traech 4 days ago. She was given IVig for 5 days, with her last dose 3 weeks ago yesterday.
The doctors have all told us that her nerve damage goes way beyond the sheath and her actual nerves were completely damaged. We got the same explanation of a copper pipe with insulation around it and usually with gbs the insulation gets nicked but heals rather quickly. All of her neuro docs tell us her “copper pipe” was cut in half as well as the insulation.
Her blood pressure goes from 250/144 (sometimes even higher than that!) to 40/? (it couldn’t even read her bottom number). Her heart races even completely sedated up to 150-160 bpm. It’s scary.
We keep praying and waiting for the good news to come. It did in a small form yesterday when we had a family meeting and thought from other docs that they were going to recommend taking her off life support, but they suggested we wait 3 -6 months for any sign of improvement. If I hear one more doc or nurse say to us that this is one of the worse cases of GBS they’ve ever seen, I might scream.
Does what I have described sound like axonal damage to you?? I know so little, even 4 weeks in. If I posted this in the wrong place, forgive me for being a newbie and maybe a moderator can move this to where it should be.
Thanks for your time.