3 months still on ventilator, completely paralyzed

You do not mention the age of your friend. I was able to recover while still in the hospital, including therapy, although I did leave the hospital in a wheel chair. My wife had to fight tooth and nail for me to get therapy while still in the hospital, as we were told that if we let them send me straight to a nursing home as soon as I was off the respirator, the recovery would be twice as long, as the therapy isn’t as intense as it would be in a hospital. We even had several of the therapists on our side against the doctors, hospital, and insurance company. It may be too late now to get the hospital therapy, unless your friend were to have a relapse and get sent back into the hospital.

When I was first dx’d with GBS, the Dr’s were sure it was MS & ruled that out first. You say your friend had plasmapherises but do not mention if IVIG was given after the PP. That is often the routine that seems to have the best results. Your friend is in the wrong kind of re-hab. He is in a “nursing” type rehab & should be in a Physical rehab. These are 2 different types of facilities for different purposes. The person who is in charge of your friend “close relative?) needs to seek out another Neuro Dr. Good luck to you.

I agree with Alma. Often recovery facilities get their names a little confused. By your friends doctor’s attitude I would say your friend is in a convalecent hospital. They are merely trying to keep the patients confortable there. What your friend needs is a real rehab hospital. They are working aggressively to get the patients OUT of the hospital.
You mentioned blood washing. Was that a plasma pheresis treatment? Which one did he respond best to?
Good luck,
Cheers!
Johnny Mac

They should try to get him seen at Johns Hopkins. If he does have GBS, he needs more help than what he is getting in rehab. Myasthenia Gravis is another possibility. MS usually does not strike that fast, but a spinal tap can rule in, or out, GBS. His family should get a private ambulance and get him to Baltimore.

I think that the advice about the spinal tap is a great one. Taking him somewhere great is also a good recommendation. Most doctors know nothing about severe GBS. I have been reading that the newest thinking is to give SEVERAL rounds of ivig to some patients with severe GBS. Our doctor told us of a story of a man who was on a vent for a year with GBS and got off and went for intense rehab for a year and walked into his office and shook his hand after the two years. There is hope if you can find the right diagnosis, tx, doctor an rehab. Best wishes

[QUOTE=boomerbabe]They should try to get him seen at Johns Hopkins. If he does have GBS, he needs more help than what he is getting in rehab. Myasthenia Gravis is another possibility. MS usually does not strike that fast, but a spinal tap can rule in, or out, GBS. His family should get a private ambulance and get him to Baltimore.[/QUOTE]

Well, unless the family is working with an extraordinary budget, then they need to have that authorized by insurance first!!!! 😮 The fact that the patient is in this type of situation right now, sounds as if this is NOT the case.

Some “nursing homes” do have PT and that is often why patients are sent there. It varies by state though. So a close family member needs to have a conference with the Dr/s involved and find out exactly what the plan of care is. There should be a definite plan of care in place, with GOALS. Find out what it is and what their goals are. I would tell them you want a “care conference”, this is where the drs and family get together to discuss the plan of care..along with short and long term goals.
If it doesn’t jibe with what was expected or the plan when transferred talk to the Drs and insurance company about transfer and treatment elsewhere.

HTH … & Good luck!!!!!!!

I was almost 49 years old when I came down with GBS and had a similar experience as your friend. I went through recovery and rehab in Kenya and South Africa so I don’t know the situation in the US very well (although I am American). In South Africa, the rehabilitation centers were not well set up to handle patients who could not breathe on their own and I was only accepted into one after meeting some tests — basically that I was at least partly weaned from the ventilator. But so long as I was still on the ventilator, the recovery was rather slow, no matter which institution I was in. It is just hard to be able to do rehab when you are connected to the ventilator (especially for me because I was producing lots of secretions). My muscles had wasted away after just a couple of few weeks, so even though the myelin was regrowing, I also seemed almost completely paralyzed after two months. Once the breathing tube came out, however, progress could be seen week by week.

So the weaning off the ventilator is very key. If the current institution is not helpful, I would recommend hiring a therapist to come to visit for an evaluation and suggest a regime for weaning (like having the patient sit up as much as possible, breathing exercises, etc..). In South Africa the particular therapist who would do that was called a Speech Therapist, but I am not sure it is the same title in the US.

I had a similar experience. I was totally paralyzed within 2 days of diagnosis, including ventilator. I was on vent from apr 12 to june 6th. I developed a deep bed sore during that time, make sure they are turning him! But they put me on 4 mg iv dilaudid every 4 hours. I went from fighting to get better to a junkie. I really went backwards until October when i came off the narcotics.

I was on a vent for 9 weeks and weening off takes time. My physical therapy durng that time was bedside. But this business of misdiagnosis is disturbing. Does this patient have an official guardian to act in his behalf? If not get one established. Clear up this diagnosis thing first.
Now, here is the part you need to understand. THIS IS LONG TERM. I was in hospital 70 days with vent, pneumonia, and every other damn thing. After that I spent 50 weeks in rehab. Start speaking with the Medicaid Coordinator at the facility because this illness will probably exceed his rehab days under his insurance. As friends, maintain his personal life, bills, his residence, etc.

My husband was also completely paralyzed and on the ventilator for 11 weeks. He kept improving and then regressing. He also had an IVIG treatment and many plasmapherisis treatments. They eventually changed his diagnosis from GBS to CIDP. His doctor finally decided to try giving him Prednisone and it worked. It worked within a week and so far he has had no relapses. He still has residuals but no major relapses. He is able to walk again and has made a rather remarkable recovery considering he didn’t walk for 3 months. He was ill in Feb 2005 so it’s been over 5 years… fingers crossed.

[QUOTE=HeHasWhat]My husband was also completely paralyzed and on the ventilator for 11 weeks. He kept improving and then regressing. He also had an IVIG treatment and many plasmapherisis treatments. They eventually changed his diagnosis from GBS to CIDP. His doctor finally decided to try giving him Prednisone and it worked. It worked within a week and so far he has had no relapses. He still has residuals but no major relapses. He is able to walk again and has made a rather remarkable recovery considering he didn’t walk for 3 months. He was ill in Feb 2005 so it’s been over 5 years… fingers crossed.[/QUOTE]

so sorry…..find posts from ‘alice’….she tried a controversial stem-cell treatment that can be done in Ottawa, she has had positive results from it…..hope you and hubby can find some warm moments on this cold Ontario day….

best wishes