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Living with Polyneuropathy CIDP, GBS, & CMT

Therapy


#1

My sister is currently out of the country and she was diagnosed with Gullain-barre syndrom. She was released from the ICU almost a month ago. She is still paralyzed from the neck down and I don’t understand why she is home, she should be in a hospital setting. My question is when she comes back to the US, will she be admitted into the hospital to receive therapy, or will it be at home? Did anyone receive therapy at home straight out of the ICU?


#2

I was in icu for a week and was also paralyzed from entire face down. I went immediately to the rehab (Rusk)section at NYU was there for 6 weeks. I had an amazing recovery Rusk is a fantastic Rehab. I still needed to use a cane when i left but walked out with no help. I was determined and positive that i would be walking out. The Drs and P/Ts said they never saw such an amazing recovery. Im 8 months out since the first signs. I did out patient rehab but it didn't compare to being in the hospital getting it there.Im just getting P/T for my face now. Im walking up to 5 miles a day. my face is still partially paralyzed can't smile yet and have some numbness and pain in my feet. That doesnt sound right, she should get examined by a Dr and get admitted in a hospital with rehab. Good luck Tell her to be positive and motived as much as possible.


#3

If not a hospital, at least an inpatient rehab facility (usually a nursing home with a short term rehab wing), depending on how she is doing by then. Insurance always prefers outpatient as soon as possible since it is cheaper but yes, most gb patients go from icu to acute care short term hospitals or inpatient rehab and seem to get released for outpatient around the time they can either wheel themselves in a wheelchair or effectively use crutches or a walker.


#4

What is your sister's status Now (March 2016) and what country is she currently living in? You also didn't ID what country she was in where I assume she contracted GBS either.

I shall take a stab at trying to answer your question but it assumes she is currently living in a border country with the USA. If not, all bets off although the possibility of using any Employer based health ins to get to where She needs to be in order to have her medical needs met would be most helpful and should be accessed.

The following response below is based on an assumption your sister is American and she has a place to live in the USA versus she is with a spouse or boyfriend and living with that person outside of North America.

If she still remains outside the USA, , if she was working out of the USA via a US company at the time the GBS was acquired, if she has Health Ins either on her own or via a US employer then depending on her current condition you might want to contact her US Health Insurer to see if it can arrange a flight back to the USA. This would be very much condition status specific but emergency coverage for that is possible via something like LifeFlight that can be coverable by some Health Insurers in certain situations but I emphasize it would be based on medical necessity and her current condition status. Such an option would mean she has to fly via such an arranged air transfer by herself. If there's anyone else with her, that person would not be allowed to fly back with her. Instead, he/she would have to take a regular flight on their own dime and make all their own travel arrangements.

If she is somewhere like Mexico, if she is stable + if she needs to get back to CA, , is there any way for arranging someone to drive her to the border that she could then cross on her own. Can you or a family member cross the border to pick her up and drive her back into the USA or at least help her get across the border if she can't do so on her own? (Keep in mind I have no idea what country she is in). If paralyzed from the neck down, does she require a breathing machine because she can't breathe on her own? If so, that would eliminate that.

If she is in Canada, I can attest to the degree of excellence in Canada's health care system. Your concern as to why she isn't currently hospitalized may be a moot point given the caliber of Outpatient services available. Whether she has ins coverage for same outside of the USA is another matter altogether. If she is in Canada, can You get to Canada to drive her across the border into the USA?

Assuming she is stable now, I don't know that she would necessarily require hospital level services. That would be dependent on her current medical status and what sort of insurance coverage she has, if any. She might qualify for an admit to a Skilled Nursing Facility or Rehab center where PT, OT and perhaps Speech Therapy are provided but that too is dependent on current medical status and her supportive service needs.

Conversely, does she have any health ins coverage in the country where she currently resides? If so, coverage service options would need to be examined re: additional Rehab services there OR poss transport back into the USA or con't care/service wherever she currently is. Depending on where she is, assuming it is still outside the USA, it may be necessary to involve the US Embassy in whatever country where she is currently living for additional options as to what else might be available.

If she is not living in a 3rd World Country but one that does have medical services available to her, that needs to be accessed by or for her.

A big question would be where does SHE want to be for further health care services. All of this could be moot if she wants to stay on for any reason wherever she is at assuming it is not within the USA.

Without more specific info I can't provide any further details than what I have generally stated above but hope it is of some help for you.

Best wishes

LJ