too long on vent and paralyzed?
AnonymousApril 14, 2007 at 7:27 pm
My husband, age 60, has been paraplegic and vent dependent since June 4, 2006 diagnosed with severe GB. After nine months they tried a speaking valve and he was able to talk. He has regained some head and shoulder motion and can operate a wheelchair with his head and a computer using a head mouse. Do you know of people who have gotten off the vent after this long or who have regained the ability to swallow and use arms and legs? His paralysis came on in less than one day. He seemed to be very strong and healthy before this happened. An absessed tooth and a flu with diahrrea seem to have precipitated this. He was on an antibiotic at the time. He has used up one million dollars in insurance in ten months – 100,000 per month. Medicaid is taking over and they have forced me to move him to a nursing home vent unit.
AnonymousApril 15, 2007 at 12:07 am
My heart too goes out to you both, what a hard journey it’s been so far. Can I ask what treatment your husband has received while in hosp ie IVIG, physio. If it’s any consolation I’ve read many stories from other people that were in a similar position to your husband and we’re able to get off the ventilator and get more movement back so anything’s possible. As you’ll see from this forum, GBS attacks us in different ways and there’s no standard recovery time, it’s very individual. Always think positively and with hard work, I’m sure your husband will make improvements. Take care 🙂
AnonymousApril 15, 2007 at 2:02 am
It breaks my heart to hear your husband has been on a vent this long. I have a severe case of CIDP and spent 8 months in the hospital continuing to decline until one day I woke up on a ventilator because my breathing muscles became paralyzed. I remained on the vent in the ICU for 2 months until they gave me a chemo called Cytoxan. After the chemo started to work I was able to come off the vent , but remained trached for another year. It took time to be able to swallow again and for things to feel normal again. I have had my trache out for 1 1/2 years now and am doing great. I now have very little disability and take weekly IVIG infusions to stay that way. All you can do is pray and keep faith. I know it is hard, but as long as you have hope you would be amazed as what can come of it.
My thoughts and prayers are with you and your family,
AnonymousApril 15, 2007 at 10:41 am
Sorry to hear about your husband’s difficulty in recovery from GBS. How quickly was he diagnosed, and how quickly did he get treatment with either IVIG or plasmapheresis…or both – what treatments, and in what order did he received them? If we see this information maybe we can be of more help.
April 16, 2007 at 3:14 pm
I Was Diagnosed With Gbs In February 1998. I Was On A Vent For Fourteen Months, Totaly Paralyzed. I Am Now Living In An Apartment By Myself, With A Caregiver At Intervals For Nine Hours During The Day. I Can Move My Arms,freely, My Hands Some, Not Able To Grip Much. I Can Use The Standing Frame And Walk Some With Full Leg Braces. What I’m Trying To Say Is Don’t Give Up, Each Day Brings More Progress. I Learned To Take The Time To Appreciate Everything.
AnonymousApril 19, 2007 at 6:11 am
Hello I’m sure your husband will get good care at the nursing home due to the fact that they have more cena’s than a hospital and he’ll get more one on one treatment and care. Be sure to communicate with the charge nurse on the unit and also with the head administrator. I wish you boh the very best and you’ll be in my prayers.
AnonymousApril 19, 2007 at 7:37 pm
John had plasmaphoresis – 5 treatments immediately. These started the day after this all came on in one day. This was followed by that many IVIG treatments, then IVIG monthly for a while. Nothing seems to have helped. He was a strong, healthy, clean living farmer when this happened. He tested negative for West Nile and all the other things they test for when something like this happens except he did have the protein in his spinal fluid that indicates GB. Are there other treatments available? The neurologist did not think that steroids would help. He has had neurotin to help with the pain and that seems to be getting less as time goes by. He does feel like he is getting better care in the rehab hospital nursing home vent unit.
AnonymousApril 19, 2007 at 7:41 pm
Shirley,Are you now off the vent? How old were you when your illness started? I printed off your message to read to John and to a young man who just had his 28th. birthday and is in the vent unit with John. He has been paralyzed, on the vent, and without speech for over three years now.
AnonymousApril 19, 2007 at 7:47 pm
Jethro, John’s paralysis started at 10 a.m. on a Sunday morning. He was diagnosed by 10 p.m. and had plasmaphoresis treatments starting the next morning. He had five of them. I think they were once a day. These were followed by five IVIG treatments. Then, he had weekly IVIG for a couple of months and then once a month for several months. Nothing seems to have helped. He was healthy and strong, a working farmer when this happened. He has had a positive attitude and good sense of humor through most of this. He has had a lot of pain but it seems to finally be getting better. It sure seems to be hard to get any information about this? I’ve read the few autobiographies that seem to be readily available.
AnonymousApril 19, 2007 at 7:58 pm
Jerimy, What kind of aggressive treatments can he have at this point? They did seem to be aggressive when this begin by giving him plasmaphoresis and IVIG right away. He had physical therapy to move his limbs daily for ten months and now just gets it three times a week by a real PT, but his visitors have been asked to continue with the range of motion exercises when they are there. He hasn’t had any bed sores in all this time or lung problems so I think they have been pretty good in that respect. He gets speech therapy a couple of times a week. Several here have mentioned his “working hard.” I don’t know how someone who can’t move much of anything can work hard. He did concentrate and work to master the use of his head operated wheelchair and head mouse for the computer. He sings to all the care giving staff when they come into his room partly to improve his speech and partly to show his appreciation. The respiratory people have told us that there isn’t anything he can do to make his ability to breathe and swallow come back. His body just has to recover enough on its own. Do you believe that is true?
AnonymousApril 19, 2007 at 10:36 pm
Unfortunately what the doctor and hospital say is absolutely true. They did, from what you say, aggressively treat your husband with plasmapharesis and IVIg treatments. Usually it is only suggested that one of the treatments is done, because they both achieve the same result, unless they feel one has not worked (which is difficult to see if the patient is paralyzed), or the patient has an adverse reaction to one of them. If the Plasmapharesis is done after the IVIg, then it washes all the ‘good’ of the IVIg out, but his was done the other way around. The above treatements are usually done during the initial 4 weeks because they say that is how long it can take for the myelin/nerves to be attacked. Of course the attack could be quicker. IVIg and Plasmaph. are given to try to stop further damage being done by the attack, and then obviously to try and speed recovery up if possible – Please realize that all the research papers show that further treatments will not help as the body is no longer being attacked, also sterroids are not a suggested treatment for GBS, but are for CIDP.
Your husband seems to have had absolutely wonderful care. The PT seems to have been really good, and its really is a good suggestion to get visitors to help with his range of motion! I think what Jerimy meant by aggressive treatment was PT and OT as there is nothing else at the moment that can be done, but waiting, and that is what is so frustrating about GBS, not timeline or definite answers. Regarding Neurontin, good med for pain, Lyrica is also used if docs feel that the Neurontin is not working as wall as it could.
AnonymousApril 19, 2007 at 11:04 pm
There was a specific article I have been looking for, but havent been able to find it. Just a quick post on something I found that says very much the same thing.
There’s no cure for GBS. However, certain therapies can lessen the severity of the illness and accelerate recovery for most people. The general treatment for GBS is supportive care to help with activities of daily living, such as eating and using the bathroom. For some, recovery can take a long time — from several months to a year or more.
According to a guideline developed by the American Academy of Neurology (AAN), treating GBS early, within two to four weeks after signs and symptoms first appear, may speed recovery time. Two main treatments, both equally effective, have been shown to speed the recovery from and reduce the severity of GBS in adults:
[*][B]Plasmapheresis[/B] (plaz-muh-fuh-RE-sis). This treatment — also known as plasma exchange — is a type of “blood cleansing” in which damaging antibodies are removed from your blood. Plasmapheresis consists of removing the liquid portion of your blood (plasma) and separating it from the actual blood cells. The blood cells are then put back into your body, which manufactures more plasma to make up for what was removed. It’s not clear why this treatment works, but scientists believe that plasmapheresis removes certain antibodies from plasma that contribute to the immune system attack on the peripheral nerves.
[*][B]Intravenous immunoglobulin (IVIg).[/B] Immunoglobulin contains healthy antibodies from blood donors. High doses of immunoglobulin can block the damaging antibodies in your blood that may contribute to GBS.[/LIST]The AAN guideline also shows no benefit in combining plasma exchange and IVIg. Mixing the treatments or administering one after the other is no more effective than if either method is used alone.
Your treatment also may include pain medications including acetaminophen and nonsteroidal anti-inflammatory drugs, possibly in combination with narcotic painkillers.
Often before recovery begins, caregivers may need to manually move your arms and legs to help keep your muscles flexible and strong. After recovery has begun, you’ll likely need physical therapy to help regain strength and proper movement to be able to function on your own. Whirlpool therapy (hydrotherapy) may help relieve pain and retrain the movement of your affected limbs.
AnonymousApril 20, 2007 at 12:09 am
GB, just curious what type of antibiotic was your husband on when he became paralyzed? i was on an antibiotic when my 1st paralysis event happened, i was paralyzed in less then 2 1/2 hours after i went to bed one night. your husband sounds like a sweet man, with a great positive attitude. please make sure you take care of yourself, it will help his piece of mind as well. it sounds like your husband has gotten all available treatments, alittle excessive on the pp and ivig, but at least his drs tried it, now its pretty much the wait and see time. with time his swallowing should improve, just like the movement issues will slowly improve. never give up hope. singing is great lung, throat and tongue therapy. i still have problems singing today-other then the fact that i can’t carry a tune.;)
AnonymousApril 20, 2007 at 6:46 pm
I don’t know what the antibiotic was but will ask his dentist what it was and let you know when I find out. John had an absessed tooth and had the root canal done and was taking an antibiotic prescribed by his dentist. I assumed that dentists usually all use the same antibiotic for that kind of thing. Four days after having the root canal, he got a 24 hour bug with diahrrea. Four days after that, he was feeling good and the paralysis started. He says that he didn’t have any other symptoms of this coming on until the day it started with his speech and swallowing going and then everything else by 3 a.m. I remember that he had complained for a long time that he often mysteriously dropped things. I wonder if this problem had been coming on for a long time but escalated all of a sudden after the diahrrea. They tested him for everything in the world – HIV, West Nile, Tetanus, Campilobacter and he came up negative for everything. A few days after his paralysis set in, his blood showed a staph infection. They did a whole body catscan to try to find where the infection was and he had two more absessed teeth that his dentist hadn’t found before. A mobile dentist came to the hospital and pulled three of his molars including the one he had the root canal in most recently. He could only open his mouth a little bit. He got a dental journal article out of procedures he developed just for John’s case. Yes, John is a sweet man and his attitude has been more positive than mine has been. He had been the care giver for everyone in the family when they needed one – his dad dying with liver cancer and my Mom after a stroke and had retired early to care for his mother with Alzheimer’s at home. He also did volunteer nature programs all over the community at the senior centers and schools and homes for the retarded. He was the person in the neighborhood that everyone brought homeless baby birds and injured animals to. He played several musical instruments well, painted beautiful paintings, and could fix almost anything. It breaks my heart to see those gifted hands without the ability to move. I wish there was a place on this or some other GB web site where all the people here who wanted to could write there stories in detail and store them for others to read. It seems like there would be some benefit in being able to compare events, treatments, reactions, and even horror stories.
AnonymousApril 22, 2007 at 12:04 am
I couldn’t respond to your post fast enough. My mother (72yrs) was diagnosed Oct 2004 with severe GBS. I have asked many times on this site if others have been vent dependent as long as she, and it’s hard to get an answer. I think most people are able to get off the vent within 6 months or so. It must be more rare for GBSers who are vent dependent longer to get off later. My mome, like your husband, was completely vent dependent for a very long time. For the past year she has been off the vent during the day, then would go on only at night – more for rest and fatigue than for lung functioning. Little by little, slowly, slowly, in bursts and spurts and back steps, she continues to progress. She has been off of her vent completely for one whole week now! She has been told many times that she would never walk, that she wouldn’t get better, that she needed to adapt to that. But she lives by the motto, “Never ever give up”. And guess what? She’s proving everyone wrong. Just last week MY MOM TOOK HER FIRST STEPS IN 2.5 YEARS! She went 35 feet. A week later, yesterday, I watched as she went 50 feet without stopping, sat and rested, then took 50 more. Believe your husband will improve. Believe it. Believe it. Believe it. Convince him that he will. And he will! Prayers and knowing how hard this is for you. And knowing too that he will continue to improve!
Katy in Phoenix, AZ
AnonymousApril 22, 2007 at 6:25 am
gbwife, your husband sounds like such a wonderful man. He has achieved so much already and it sounds like he is keeping his spirits up which is sometimes half the battle. It sounds like he has such a wonderful positive attititude … if he has mastered his wheelchair and computer, maybe he could start modifying some other activities he enjoys (sounds silly but maybe painting with his mouth?)
Katy your mom is also an inspiration. Sometimes you just have to accept that the doctors do not know everything about GBS and that anything can happen. Your mom is testimony to this. What a woman! Sounds like she will be running a marathon in no time – at half her age i wish i had her determination.
There are various websites on GBS that have case studies. I have been trying to write my story for the last 6 months but it is turning into a novel … hopefully i’ll finish it one day.
You must be logged in to reply to this topic.