AMAN Varient 7 weeks on vent
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November 3, 2015 at 11:07 am
Hello, my husband is diagnosed with AMAN variant of GBS and has been on a ventilator for 7 weeks. The full body paralysis has eased up some, and my husband is back to moving his head, eyes and can shimmy his shoulders. I’m looking for others with this variant and am wondering how long you or your friend, loved one was on a ventilator. How long did it take for your diaphragm to begin working?
My husband seems to be having all of the typical issues that present themselves when you are so trapped and needing such medical assistance. He has had pneumonia twice, a pulmonary embolism, he desaturates everyday, his ventilator settings fluctuate from 100% to 40% O2 and a peep of 18 to 10. He has delusions periodically. He’s been moved to a hospital room that has a wall of glass windows, so he is getting some natural light.
Within 36 hours of admission, he had his spinal tap and began 4 days of IVIG followed by 5 days of plasmapheresis. He’s medical care is spot on, they are all over him when his needs change and they are very proactive. Last week he received a 5 day course of Pulmozyme to break up the stuff in his chest.
What has been your experience? How long were you ventilated. I keep telling him he is one more day to being closer to rehab (were the real work begins). I know everyone is different and has different stories. This has been a lonely, sad road. I would do anything to have him back.
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November 3, 2015 at 3:14 pm
I really am starting to believe that this dot org is a hoax. Seriously. My mother came down with GBS in April, I contacted this group for help in understanding the syndrome and everything behind it. I got one email response with the name of my area contact – who never contacted me. I’ve called this organization and left messages, I’ve emailed the local area rep and this organization and never heard anything. And here I am, 6/7 months later and I can’t even get one person to comment on my post? I go back and see how quickly others have responded – seriously. Who are you people? And what a cruel means of dealing and “helping” others. What a waste.
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November 3, 2015 at 8:47 pm
It is definitely not a hoax, but this website unfortunately has few regular contributers. There used to be more, but when the site was redesigned, a lot of them left in a snit. Most of them weren’t that committed to the mission of the organization anyway, but just wanted a place to chat. I think they went to FB, but I’ve never been interested in that.
One problem is that these disorders are rare and there are many variants. So, for example, while I was completely paralyzed for a time I don’t have AMAN and don’t know anything about it, and I was never on a ventilator.
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November 3, 2015 at 8:50 pm
To continue, I don’t think it’s cruelty. Many of the people who work for the organization are volunteers, and it is difficult to get committed volunteers. Where are you located?
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November 3, 2015 at 8:54 pm
The quickest way to get an overview understanding of GBS, by the way, is to get a copy of Parry and Steinberg:
http://www.powells.com/book/guillain-barre-syndrome-9781932603569/61-0
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November 4, 2015 at 12:02 am
AMAN is quite rare and few forum members have experienced it. Some of us without a diagnosis of AMAN or some experience with the disease, may hesitate on offering advice to an AMAN patient.
You may find some useful info in the following topic thread:
https://forum.gbs-cidp.org/topic/axonal-guillan-barre-aman
Or in the this brochure:
http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2012/01/CIDP.pdfI wish your husband the best recovery possible.
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November 21, 2015 at 7:18 pm
If I haven’t mentioned it lately, I have acute motor axonal neuropathy. That’s a variant of Guillain-Barré syndrome. It’s so rare there’s no point in having our own Facebook page.
http://whatyourdonotknowbecauseyouarenotme.blogspot.com/2015/11/another-progress-report.html.
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February 1, 2017 at 9:34 am
Hi I was diagnosed in July 2015 and had PE (2weeks) in hospital followed by 1 month of acute rehab then 6weeks subacute rehab. I came home with a walker and after 2 weeks began using only AFO’s. Began riding my bike and walking unassisted late summer 2016. However my hands are not progressing as well. My dx is AMAN GBS which means I have axonal damage. I been told that my recovery is going well but, I have periods of anxiety. I’m curious to know how much you have recovered. I’m blessed to still be here.
RonSent from my iPhone
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February 1, 2017 at 3:57 pm
Hi Ron
We are very much alike. I was diagnosed it back in May 2014. I spent two months bouncing between hospitals and acute rehab and then another two months in subacute rehab. I came home when I was only a one person transfer between the bed and the wheelchair. Been in a few months I was using a walker and then a cane and two weeks ago I had no problem walking in the New York City Women’s March. It was only a mile, but I was on my feet for about eight hours. But round doorknobs and pencils are useless to me. Some places the damage was to the axons and in others it was the sheeths which are mostly healed by now
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February 2, 2017 at 11:24 am
Didn’t you forget buttons?
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February 6, 2017 at 4:43 am
I can relate to the posts from Ron. I had AMAN in April 2014.I was roughly four months in hospital mainly rehab learning to walk and gain use of my hands. Main advice I can give is dont give up. My hand use was very slow. I was told I would never have functional use of my fingers as damage was so bad. It took over a year but I regained almost complete use of both hands again.
Its a hard path to tread but every day seems to improve things. Important to have family or friends around you to remind you how far you have come.
I am currently fighting back from Millar Fisher so have managed to get two of the rarest syndromes about☺.Good luck to all.
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