Devastating Prognosis

Hi,
Most doctors see very few cases, so they often say “it’s the worst they have ever seen”.
Do not despair, people often make a full recovery from a severe case, but it will take time.
Others will give more detailed advice later.
Neil

Hello. My fiance Ben was also “the worst case they’d ever seen.” He was treated with plasmapheresis over a period of five days and on a ventilator for three weeks. On top of that, he had a WBC count of 222,000, and they were unable to determine the source of the infection. Since Ben was allergic to the antibiotics used to treat the infection, his already weakened body was forced to fight it on its own. He also developed pneumonia in one lung. He was in a medically-induced coma during those three weeks, and nobody could tell me if he would make it or not. However, three weeks later, he began to recover and was walking again after three more weeks. It’s been almost two years now, and besides the residuals (fatigue, muscle spasms, etc.), he’s doing really well. He was 37 at the time.

I hope your father is still being treated with the IVIG. He needs it more than just the one time in order for it to really start to work. I’m sure Gene will be around later to let you know the amounts he will need.

I hope your father starts getting better soon!

Shannon

hi manitoban & welcome,

ivig is given in the amount of 2grams/kilo of total body weight over 2 to 5 days with a drip rate of 100 ml/hr. make sure he gets the full amount. ivig is not a cure. it has a 70% chance of stopping further damage. recovery comes later. all you look for is no more decline. if after 3 weeks of the full ivig amount he is still going downhill, then plasmapheresis [pp]should be given. it too has a 70% chance of stopping gbs. unless they have done an emg/ncv looking at both the m & f waves, they can’t really tell myelin from axonal [what you call permanent] damage. axonal damage takes much longer to recover from. recovery from gbs is high. the amount of recovery & how long it takes no one knows for each gbser. i never heard of this 15% you speak of. keep us posted on this thread. many have had your dad’s Dx & make substantial recovery. never give up. never give in. take care. be well.

gene gbs 8-99
in numbers there is strength

Manitoban,

I echo what has been said about “the worst case”. I was completely paralyzed, that included not being able to even blink. I was on a vent, and had a trach for 6 weeks. GBS is rare, and a great majority of doctors dont see GBS cases, and if so, not that often at all. What you need to remember is that IVIg and/or plasmapharesis, does not necessarily show immediately, and is [B]not[/B] given as something to make the patient ‘better’ as such. It is given to try and stop the attack on the nerves. Most patients, even though paralyzed are given PT during this time, and of course afterwards to. This helps, amongst other things, to prevent muscle atrophy. Also, there are liaisons accross the country who could possibly visit, or speak with you if you so desire.
Please come back and keep us posted on what is happening …. and keep your dad informed as to what is going on around him as well.

Hi: I was also told the IVIg did not work for me and it was debated given me a second go round, but I was sent to rehab instead and made a good recovery despite the initial failure. GBS is not fun and it is not easy but most people regain their mobility. Incidentally, I also had extensive axonal damage to my legs but am able to walk with a cane and could do so after only a few months. Be patient and you will see results. Good luck, Jeff

Hi Jeff,

When they were debating about giving you a second round, do you remember how far ‘in’ you were i.e. 3rd or 7th week, when they spoke about doing it?

Yes, unfortunately pneumonia is a horrible complication to have with GBS, and when the lungs are effected by the GBS then it is so easy to get it. Is your father able to communicate with you at all, and if you dont mind me asking, how old is he?

Hi Ali: I was just entering my third week and the disease was still progressing after 3 days of IVIg. I waited in the hospital two more days and then was sent to rehab where the paralysis spread for another three or four days and then, thank God, stopped. The docs felt that the continuing spread of paralysis meant the IVIg hadn’t worked. Jeff

Manitoban,

I can definitely appreciate the “bad dream” you’re in. I felt the exact same way while Ben was in CCU. I feel for you! If you ever need to talk, my number is 630-589-4990.

Shannon

Manitoban,

Your Dad and family are in my thoughts and prayers. If there is anything at all we can do don’t hesitate to ask.

Jerimy

His good physical condition should be an asset to him in his recovery. I know it helped Ben a great deal when he was starting to recover.

I am beginning to think that many here have been told by their doctors that they have the “worst case of GBS they have ever seen.” In the beginning, I was told that I had the mildest case of GBS they had ever seen, but when I continued to decline after plasmaphersis treatments as well as IVIG, I was rediagnosed with CIDP. When I got to quad staus, I was told that I had the “worst case of CIDP” they had ever seen. It was almost kind of funny, as I was a patient at the Mayo in Rochester at the time, & it turns out my roommate had an even worse case of CIDP than I did. I just wish doctors would think more before they talk.

About your dad, I don’t know his age (that can make a difference,) but to me it sounds like a classic case of GBS. Just remember, although most recover fairly well, we are talking months, not days or weeks. And I think it is way too early to be saying he has axonal damage as opposed to just myelin sheath damage. Just be patient & allow time for the illness to run its course. Best of luck to your father & his family.
Pam

I am surprised how seldom doctors / nurses see GBS – I found myself having to explain it to them once i was out of ICU.

How do you determine a “bad” case (i dont think there is ever a good case of GBS!) – is it how severe / extensive the damage initially or is it how long it takes to recover / the extent of long-term disability?

Mine was definitely one of the fastest declines my doctors had seen (and it seemed the doctors and nurses in ICU had seen a few despite being a small country hospital) and the extent of my initial paralysis was pretty bad (everything except my tongue!) But i also amazed them with my recovery so in that respect i was one of the better cases they had seen.

Looking back, even though i feel like i went through hell at the time i think i am pretty lucky to have come out the end of it relatively unscathed.

Hi Ali,

I know how traumatic this must be for you. I never quite realized how bad I really was until after having recovered. GBS for me paralyzed me except for my lungs were spared. I was give IVIG treatments but my neurologist didnt seem to think it was stopping the progression so I was give plasmapharesis. Plasmapharesis is quite an invasive procedure. If your dad has to have that it helps to have someone with you. Remember he may be paralyzed but his mind still works. He is still aware of what is going on. The hardest thing was being paralyzed. I did live on faith and hope that this was only temporary and it I would get better. I spent three months in the hospitals. Through rehab I’m managing today with only some small residuals. It really opens your eyes to what it is to be like to be without the use of your body and how much it takes to come back.

Caorline

they may mean emf not voltage. either way i have never heard of emf conflicting w gbs nor pneumonia.

didn’t want to mention this before, but will now since i wonder some about these docs. if it were me i’d ask why the ivig can’t be finished. it is not an immunosupressant. it could be, but i don’t know how it may conflict with pneumonia. take care. be well.

gene gbs 8-99
in numbers there is strength

Manitoban,

I was wondering how they came to the conclusion that your father would be on a vent for 6-12 months. This could very well be the case, however, I think its it so very difficult to give a time frame for any GBS’er as no one case is the same, and patients recovery times are vastly different.
I think its a wonderful idea about decorating his room.
This is such a very stressful time for you and your family. If you havent done so yet, there is some literature you can get from the Foundation – gbs-cidp.org website – for patients as well as family members which could be helpful to you.

Manitoban I’m sure you’ve been told this but it is super important to give your dad all the encouragement and positive support you can. Don’t let him be exposed to negative prognosises as much as you possibly can. Even if they’re experts and know all there is to know about being on vents. The human body and spirit are resiliant–he will surprise and amaze everyone given the chance.

Manitoban,

Just want to tell you to take any prognosis by your father’s doctors with a huge grain of salt.

As Ali said, each patient is different and it is not possible to predict with any certainty how quickly recovery will go, or how completely a patient will recover.

Most of us on this forum have had at least one doctor tell us that we wouldn’t progress any more, and we proceeded to get better anyway. Not many doctors have ever seen, let alone treated a case of GBS, so they are mostly guessing.

I hope your father will make liars out of all his doctors!

Suzanne

Manitoban,

Ditto what everyone else already said. Ben’s doctors predicted he would be in a wheelchair for 1-3 years, and he was walking after two weeks. They just don’t know.

Best wishes,

Shannon

manitoban,

as long as your dad is not declining, it is a good sign. recovery will come later. the bed sore is a sign of poor treatment by the hosp staff [nurses?]. he needs to be moved to a new position every few hours. neurontin for pain. take care. be well.

gene gbs 8-99
in numbers there is strength

I think its often those nurses who dont want to get up from their chairs that deem patients too demanding. Sometimes the nurses do think that the patient sets off the monitor alarms on purpose, I hate to say this, but I did that every now and then to get someone’s attention.:o 😮

Wow, does this bring back memories of my ICU. I was in ICU about 2 weeks of my 3 months stay and I can tell you stories of bad nurses too. I don’t think they really understand much about GBS. They are used to taking care of unresponsive patients and with GBS we are awake and know what is happening. I was also labeled too demanding by some of the night nurses. I remember having to be turned alot also. Hang in there. Just be there for positive support and make sure your dad gets what he needs.

Caroline

Manitoban 🙂

We are former Winnipegers now living outside Canada. Our 13 year old daughter was stricken with GBS earlier this year. Her case sounds similar to your father’s.

You are in for a long haul. I remember that care, in any hospital, is quite variable.:rolleyes: ICU wards aren’t really set up for long term “care”. It is noisy, there are lots of interruptions, nursing seems to be more efficient and factory-like than sympathetic or humane. I am glad your Dad has a TV to watch. If he likes to use a tele/mobile phone to talk to his friends, this can be a good activity. (As our daughter recovered she dictated text messages to me so she could update her friends, then she began to text herself as recovery permitted). We got a CD player and rented movies as recovery permitted as well. The new bed your Dad is in sounds fantastic! They really help with the bed sores. There are some good creams available for rash and bed sores, perhaps a dermatologist could assist? Learn to work around the nurses who don’t seem to have a good fit with your Dad’s style or family’s style. We used to schedule TV or movie time when the [I]wicked nurse from the east[/I] was on shift. It sounds like you are not afraid to ask questions which is a great thing.

I remember the neurologist constantly reinforcing to us that GBS results in a plateau after the downhill slide… this is where the disorder just sort of parks for a while and you don’t see any changes. IVIG and plasmapheresis had been carried out… It’s not getting worse, but it’s not getting better either. 🙁 (We found this period excruciating as we waited for those first little signs of improvement). It will improve! Your Dad’s body will eventually head back towards its pre-GBS state. It takes time. Lots of time. Like waiting for spring in Manitoba…;)

Have you received the package from this GBS foundation? We just got ours, and we have found it excellent and it arrived very quickly, I might add.

We will keep your Dad and your family in our thoughts and wish him a speedy recovery. Good luck and Merry Christmas.

halcyonsancta

maniotban,

if he is getting worse, then he has not plateaued. if he is getting worse, the ivig or pp is not working. if it was pp then ivig should be tried immediately. if it was ivig, 3 weeks from the infusion should be given before pp to be sure the ivig is not working. use an alphabet board to communicate. also write out usually used statements, point to them one at a time to ask him if this is it. take care. be well.

gene gbs 8-99
in numbers there is strength

When my five treatments of IVIG didn’t seem to work, my neuro started pp immediately. It seemed to stop the progression but again how fast is IVIG suppose to work. My neuro was concerned for lung problems and started pp right away. Was my neurologist wrong in doing this?

We’ll keep praying?

[QUOTE=ali]I think its often those nurses who dont want to get up from their chairs that deem patients too demanding. Sometimes the nurses do think that the patient sets off the monitor alarms on purpose, I hate to say this, but I did that every now and then to get someone’s attention.:o :eek:[/QUOTE]

Ali, you make me laugh!!!!!:D

I used my chin to ‘pop’ my vent loose from the trach just enough to make the buzzer go off to get their attention!!!!! Somedays it was the only way to get them in there when I was in so much pain and I knew that they were ignoring me. Then when John would come in and I would let him know what had happened and I wouldn’t get that nurse again for a long time.

It is a shame when you have to do something like that to get the care and attention you deserve………

Angela

Hi Manitoban,

I’m sorry you’re father is still on the ventilator, especially during the holidays. My fiance Ben’s face was effected with his GBS, and two years later, he still has trouble smiling. In fact, he mentioned to me the other day that his upper lip feels “heavier” now, and it’s more difficult for him to control. Ben was also too ill to be treated medically. He had the regular rounds of PP, but he was too sick for IVIG. I hope your father will begin to see improvement soon. I hate that he’s still in ICU.

Love,

Shannon

How sorry I am for all the distress your Dad and family are going thru. Please know that prayer thoughts are with you.

Do you have enough family/friends available to take turns staying by your father’s side? That way he is never without an advocate and it would take some pressure off of the understaffed unit. I know ~ you are paying to have him “cared for” but the reality is understaffing. For your peace of mind and your dad’s and his safety I would strongly suggest this route. Legally the hospital cannot refuse to allow this. It is not an easy job to be an advocate BUT your dad’s life depends on it. Good luck!

i am so sorry to hear of your dad’s lack of progress and also the hospital care he has been receiving. I was very lucky to have excellent care during my 4 weeks in icu (all under our public health system which didnt cost us a cent i might add) Most of the nurses i had were excellent. Only a couple of hiccups – 1 nurse who was trying to take blood from my wrist (not an easy task with my veins) Luckily i woke up (bloods taken at 5am every morning) and managed to write a message to her before she butchered me unnecessarily. What did she think my central line was for? Did she think they were trying to find a vein every time they took blood, every day for 4 weeks? Another time i was being moved from my bed to the tilt table and they forgot to unhook my central line. Nearly yanked the central line straight out of my chest! Nothing too major though and like i said,majority were excellent.

As for his facial muscles, sounds like Miller Fisher. Every day my doctor would ask me to smile and frown to see if i had regained any use of my facial muscles – they were one of the last things to return. I also had a massive ulcer on my tongue – i presume from the time i was intubated as i was always pushing the tube around with my tongue. Luckily i couldnt feel it as everytime someone saw it they winced, so it must have been a ripper!

i know how hard it must be not being able to communicate. I got so frustrated – as soon as i got movement of my hands back i was writing like a madman. Before that we had a system of people asking questions and tapping my toe once or twice for yes or no.

Hang in there and keep being your dad’s advocate, you are doing a wonderful job and i am sure he appreciates it.

Manitobin,

Sorry to hear that things are not going so well this week for your father.

I think you have good reason to be worried about hospital errors being a real danger for your father.

Judi Z is right on target about having family or friend with him at all times to be his advocate. Imagine how frightening it would be to be totally helpless and dependant, and know that the people who are in charge of your life are not paying attention or being careless. No wonder he’s panicked.

I know it adds more responsibility to your already burdened lives, but hospitals are dangerous places to be. Your father needs someone to be looking out for him and staying with him as much as possible.

Best wishes for a much better 2007.

Suzanne

M,

It is said that MF generally starts in the face, often effecting the eyes rather badly, so that the symptoms are descending as opposed to ascending. My face was effected badly, double vision, no movement at all, but my syptoms were not descending, it was sort of all together, so I was not diagnosed with Miller Fisher. Remember, if the face is effected, it does not an that it is the MF varient.

Maybe that clarifies it a little

[quote]
[B]What is Miller Fisher Syndrome?[/B]
Miller Fisher syndrome is a rare, acquired nerve disease that is considered to be a variant of Guillain-Barré syndrome. It is characterized by abnormal muscle coordination, paralysis of the eye muscles, and absence of the tendon reflexes. Like Guillain-Barré syndrome, symptoms may be preceded by a viral illness. Additional symptoms include generalized muscle weakness and respiratory failure. The majority of individuals with Miller Fisher syndrome have a unique antibody that characterizes the disorder.
[B]Is there any treatment?[/B]
Treatment for Miller Fisher syndrome is identical to treatment for Guillain-Barré syndrome: intravenous immunoglobulin (IVIg) or plasmapheresis (a procedure in which antibodies are removed from the blood) and supportive care.
[B]What is the prognosis?[/B]
The prognosis for most individuals with Miller Fisher syndrome is good. In most cases, recovery begins within 2 to 4 weeks of the onset of symptoms, and may be almost complete within 6 months. Some individuals are left with residual deficits. Relapses may occur rarely (in less than 3 percent of cases).
[/quote]

In regards to the poor health care – mostly ‘the system’, I would like to advise keeping a journal and taking photos of anything that is not right. Unfortunately, I have learned this as my family is going through a wrongful death suit against a hospital. All due to their negligence.

And don’t forget to take care of yourself too!

…that GBS is going to run its course over 3-4 weeks and then it stops progressing? So, as I read the posts I wonder if the treatment that each of us used was really that effective in some cases. Why does IVIG work for some and not others? Why 70%? Could it be that the GBS was going to stop on its own….thanks to our body? I kept my progression down with supplements, but it did stop after a month. The neurologist said I was in the beginning stages (I could barely walk) since I could hold a cup. I got out of the ER and continued on my supplements. Is the IVIG really working or did some get it at the end of the 3-4 weeks? There is some risk in any invasive procedure. Sometimes we have to recover from the remedy.
Another question I have is …….Do you suppose that some get permanent axonal damage due to the Physical therapy being done too soon? Or too much? I tend to use my intuition with my healing and I think that if the communication/ nervous system is not working, why walk?Exercise the muscles other ways. I learned from another thread that the PT told them to crawl. I wondered why – even though that is what I have been doing! My guess is that crawling programs our brain in some way. Didn’t they use it in a child’s proper development. If you miss that stage, it gives learning difficulties. Does anyone have any ideas?

Carolyn,

In a way, I hate not being able to talk face to face because sometimes posts can be misleading and not understood correctly 😮 .
Are you asking if GBS runs its course in 4 weeks and then stops? and why IVIg only works for some people and not others?
When I was told by my PT that I needed to crawl first, I think her explanation had to do with proper development, just like children. She spoke about learning to walk correctly, as opposed to the way I was flapping about …… I cant remember the conversation in detail at all because it was over 20 years ago, so I’m sure I’m missing something.

Carolyn,
I have often wondered many of the same things as you do. I have been reading this forum for 4 1/2 years now daily, & have read of people who said they had very mild cases of GBS because they were dx so quickly & given IVIG by their neuros. Others have said that they had such mild cases that they were told they did not need any IVIG or PP, & they turned out just fine. Others have had severe cases in spite of receiving the standard treatments right away, you get the idea. I guess I have read every scenario possible.

IVIG has only been around 20 years or so, & most people with GBS made compete recoveries before then, so are some just going to have less severe cases to begin with? It doesn’t even appear to have anything to do with age or your previous state of health. I think the severity of GBS & CIDP are predetermined at the outset, just as there might be a predisposition to these illnesses to begin with. Just a thought, but I am certainly not recommending not giving IVIG or PP to someone who has been dx with either.
Pam

Manitoban

I am sorry to hear things are not turning around yet.:(

We dealt with total paralysis of our child’s body. She could only move her head up and down plus or minus 1 mm. Nothing else, nada, zip. One millimetre. 23 days with no change. Then it began… with just a faint motion in the right eyelid… we weren’t even sure it was there at first…

We developed a method of asking questions (much faster than writing) with simple yes or no anwers. No movement for no, a nod +/- 1mm for yes… it was painstaking, but it worked. We were the only conduits for communication with the doctors and nurses who had neither time nor inclination to facilitate this. The primary neuro and the ICU physician in charge thought we were pretty clever. You could try this with your Dad too, and everyone in the family who visits can do it with him. Figure out what works best for him in terms of sending the “yes” – it really does work OK and you would be surprised at what can be accomplished. Pain was rated on a scale of 1-10, with 1-5 being bearable, and above that meaning that medication was desired.

It doesn’t sound like you are too happy with the hospital at this time. You could consider a move to another hospital. You can make inquiries with hospital management. Don’t be afraid to ask questions calmly, and make sure you get what you want for your Dad.

The respirator alarm is a freaky thing. It is pretty shocking you see someone keeping your loved one alive with the manual respirator (or ‘bag” as it is known). This happened several times to us during mucus removal, or later when the trach hose popped off… it is tough to stay calm. Hang in there.

Your Father, and you and your Family are in our thoughts and prayers today.

regards

hs & family

sorry, did not mean to cause any further confusion (as if things aren’t confusing enough for you already). I thought Miller Fisher involved more cranial nerves than classic GBS but i might be mistaken. I just wanted to let you know that his lack of facial control is not uncommon and hopefully it will come good with time. And, seeing you are taking such an interest in his case and researching his condition, i thought i would mention MF so you can arm yourself with that info as well. Not that it alters type of treatment or anything.

Alison,
Yes, I thought I read in the GBS booklet that it usually takes up to a month in the progression of the disease and then the rest is long recovery. And isn’t it true that the IVIG doesn’t work for everyone?

Pam,
Thanks for looking at the big picture. I teach science and I have seen how doctors in the past (like Semmelweiss who told doctors to wash their hands between examining new mothers to stop puerperal fever) were laughed at when they went against the current methods and yet were right. It usually took 30 years for them to be vindicated. I keep thinking that we are missing the big picture here. The super doctor I had 20 years ago when I got it the first time said he would have given me IV of adrenal extract and IV of ascorbic acid if I needed to be hospitalized. I took the C orally from the onset of the GBS which kept the pain away and the symptoms mild. When I took the adrenal extract it turned the GBS around. But I took large amounts.

Manitoban,
Did you say that PP had side effects? As the GBS was progressing, I was calling hospital blood labs and they told me that PP was somewhere around $5,000 a session and that is why it wasn’t used as much but it had less side effects than the IVIG. When I read the IVIG side effects, I decided not to go that route unless I was not breathing.
Reading your post broke my heart….what a nightmare.

Manitoban,
Did you say that the IVIG destroyed your dad’s red blood cells? I called the blood banks/labs at 2 hospitals and was told that the PP had less side effects but more expensive and the IVIG had lots of side effects. One of them was swelling of the brain – temporary. I also wondered how many people’s plasma was involved in each treatment. If you can find out, I think that would be helpful to know.
I usually take 10 grams (10,000mg) of C a day when healthy and I took 16 grams when the GBS was attacking my body. There is an great website [url]www.lef.orf[/url] Life Extension that gives up-to-date studies. I typed in myelin sheath and read some of that info. I think it is the B complex capsules that I am taking – 100mg four times a day – that is keeping the pain down. The nerves need the B’s so I give it to my body. I used to inject B12 into my body when I had GBS the first time. I take these normally. I feel like a guinea pig when I read the posts to see if the supplements are working. I think as far as the pain goes, I am ahead.
I also think there are no accidents so each major experience is a lesson. I am wracking my brain to figure out WHY I got this and TWICE!! I know it was stress…but why did I get it 20 years ago when I was leaving Pennsylvania for Florida and now again when I came back for a visit. I don’t believe in coincidences.

Carolyn

Yep, for GBS symptoms stop progressing within 2 to 4 weeks, so after that, and I’m sure you know this, but just for clarify to others, IVIG or plasmapharesis apparently wont help after that. As for why some dont respond to IVIG or pp …… All I can come up with is, like any medication, some agree with certain people, and others dont. When I think of this, I can think of specific meds that I’m taking, Provigil and Cymbalta, that tend to help me tremendously for fatigue and pain, while for many others on the forum are adversly effected by them.

Your concern sounds like what my daughters were writing in Aug ’05.
I too was in CCU within hours of diagnosis and on vent within three days. I now am pretty fully recovered after 9 weeks in hospital; 5 of which were acute therapy. I am 66 so there is good hope for your dad. I will pray for him and for you.
Al

manitoban,

if your dad is in neurological pain he needs/needed neurontin not morphine. gbs stands for Get Better Slowly. he sounds like he is on the road to recovery. rest can not be stressed too much. make sure he gets as much as he wants. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi: Check the forum for a thread I started on dream disturbances and hallucinations. These are not uncommon in GBS. Jeff