Bad Prognosis

Hi Christie.
1st when did a SHRINK become an authority on GBS. I had several Neuroligists that treated me and said what and where I would be going.Your father-in-law is showing great recovery in a short time.It took me 3 months to go from crawling to walking again. We do heal from GBS but in alot of cases the healing is slow.WHY is a SHRINK involved with your father-in -law. To me this would be like an eye doctor treating me for a heart problem ????
Christie I suggest you get Bob under the treatment of a proper doctor a Neuroligist. Tell the SHRINK GOOD BYE. Bob is recovering and given time the odds are 99% he will walk. But if someone says he will not then this will defeat his drive to walk again. Trust me I definatley will not be the last repy to your letter.
(Steve) I carry Bob & you in my prayers

Christine,

Your father-in-law honestly seems to be doing very well! 11 weeks is absolutely nothing when it comes to recovery time …… absolutely NOTHING.

I met with a number of ‘old’ (as in already a few years from diagnosis) GBS’ers last weekend, and I SOOOO many had a similar story to tell. Many were told they would never function normally again, would never walk again, in fact, one woman who was paralized was lying in the ICU while two nurses discussed how sad it was that she would never live to hold her new born baby. EVERY SINGLE one of those GBS’ers walk now … yes, some do use a cane (and one a wheelchair) when they are tired, and we all have some kind of residual to speak of (fatigue and some pain), but ALL in that room lived meaningful, productive lives – and all are able to walk.

Your physiatrist has no right to say what he did, he may very well know certain illnesses, but he obviously knows nothing about GBS. No neurologist who is worth his salt and knows anything about GBS would ever say anything like that, I’m wondering why he said that, unless there is something else underlying besides GBS that I know nothing about.

Please, please tell Bob that the outcome for GBS is extremely favorable and that at this point from what you say, he seems to be doing rather well. As usual, the common saying, which I’m sure you know so well by now is …. G B S = Getting Better Slowly, and by slowly they mean months and years, not days and weeks.

To Mochacat (and Christine):

Christine stated her father in law has been evaluated by a PHYSIATRIST not a psychiatrist. A physiatrist is a medical doctor specializing in rehabilitation medicine. He is the perfect specialty for a recovering GBS patient or a CIDP or MS patient. However, I do agree, he has really no way to predict your FIL’s end state of recovery – especially so early in the game.

Thank you Bilt I was not aware there were doctors for rehab. I know that my Neuroligist was my doctor all the way through. She set me up with my therpy and therpist. (no doctor) Today so may call themselves doctors but so few really are (Steve)

Christine I am glad you left a message on our boards. We all count those days and weeks in ICU. Some cases it took longer to be diagnosed with GBS. Some it takes a little longer for the team of Doctors to come up with the treatment they are going to use. IVIG did not work for me and I went on life support for a few days and was given a trache for the rest of my stay in the hospital. The Plasmaphresis was then given. A total of 9 weeks. I went from being told in the ER that I had MS to being able to walk into my home 9 weeks later. The walk was not strong and was not a record breaker as far as distance. It was done by using a walker from the car to the steps and them a very slow climb using the railing up two short flights of stairs with a long break inbetween. I was told to keep trying and that is what I am telling your family to be very possitive and keep trying to educate the staff and themselves as caregivers. I am back to driving and shopping on good days. I still sleep 10 to 12 hours a day. I am still in rehab and an exercise program to strenghten, stretch and get my staminia back. My feet and hands are still numb, I never was on any pain meds, but many of my buddies here have been. It has been a few days shy of two years and I am still getting better! I agree that you should depend on what the neuro and the rehab doctor says, but then use your judgement too. Ask questions. Ask them to explain what tests were given to determine their dx. I can tell you that at 11 weeks I still needed alot of help doing everything. I had to use equipment to help me do everything. Get in bed, get out of bed. Pick up clothes and pull up clothes. Sponges baths were still a hassel and I had to use the transfer chair for the tubs. The nurse come several times a week for a month and after that Occupational Therapy and Physical Therapy come two or three times a week for months till I could get a ride or drive myself to the facility only a few miles from my house. I was lucky I was able to stay in the same hospital building for the last 8 weeks. First week that hospital was not able to give me the PP so I was transferred to a larger hospital. After 3 weeks in their ICU I was transferred to a different floor that was rented by a nursing home type company. Everyone on that floor has Respiratory problems and were on traches. There I got very good care but they worked me in Rehab more than most of the elderly patients on that floor that had no hope. They did OT and PT with me Monday thru Friday as my GBS started to reverse itself. They had the Speech Therapist work with me and swallowing. I still remained on the feeding tube for another month. But learned to eat pretty well on my own. Each day I had 4 or 5 small brags to show my husband what we discovered I could do. Even if it was to wiggle a finger or raise a hand it was a big brag to me and an awesome big deal to my caregivers to watch me getting better each day. The day I could hold the telephone receiver myself! My hand got strong enough to use the call button to summons a nurse. *I wanted to just call them sometimes to prove to myself I could still do it, but I knew they were busy!* I could change the tv channel myself. I could even use my sippy cup myself. That one was a biggie too! Oh and once I got the valve on my trache so I could talk. I never stopped. If they wanted to take it off at night and put me on more oxygen I gave them “THE LOOK” They ofcourse ignored it but knew I did not like to be silenced. In a few weeks on that floor (3 weeks I think) I took the test to see if I was able to be moved back into the hospital to their rehab floor for some real and I passed! I could walk with the walker frame the required ten steps! I wanted to go home for the holidays but did not make it but I walked down the hall from my wheel chair toward the elevator doors. First attempt was 24 steps! I sat back down because I knew I was one step closer to going home. Then on my second attempt I did 30 steps! I sat back down in the wheel chair and grinned ear to ear! I had even done more than they required but was not dumb enough to do more and take a chance of falling and having to go downstairs for x rays on an arm or my chin. I rested that next weekend and was moved to the rehab floor with the gym and machines and a team of people that pushed me just enough to get me home but did not push me too much that I had no function the next day. I did have some residuals like swelling happen and a fall that injured my shoulder, but even those things did not stop them from getting me home in a few more weeks. For Christmas Eve I got to show my husband my big brag that would make his Christmas better! I had the two male nurses stand on either side of me as I sat up on the edge of the bed and walk a few steps over to the chair. Once there and seated I looked him square in the eye and said Merry Christmas! So don’t let them tell your family member that he is not going to be able to do this or that. It is too early in his recovery to even tell. Tell him he will get better slowly, but he will get better! I am not going to lie to you as one of his caregivers it is going to be a challenge for the family to take care of him for months after he is home but once you get home things like REST come easier! He MUST get plenty of REST! The covering to the nerves heal at a very slow rate. That recovery takes months and years. He will have to be patient! Do too much too soon and it will set you back a few days so your body can recover. He will have to learn to listen to his body and you will have to learn to listen to him. There is no fast ticket in this recovery. Now he can measure his recovery from day to day…..later it will be harder and you will see progress week by week or month by month. Keeping a Journal for him and then letting him continue to keep the Journal going is the better way to see progress….step by step!

Christine, Tell Bob your father-in-law to just keep on going. No one can predict the future and every aspect of medicine is complex because people are complex. Nerves heal very slowly–very, very slowly. In addition to the common quote that GBS stand for Getting Better Slowly, one of the things that most helped me initially after joining this forum was the advice to look at progress with the scale of months not weeks or days. You say he had made great progress–he has and needs to believe this and not listen to people trying to guess the future. One of the main discussions I have with my neurologist is about the “slope of the curve”. As long as people are improving, you cannot way what the end point will be. If there is no more progress over quite a while (because there can be some ups and down in this illness due to intervening factors), then MAYBE he should start preparing for the possibility that he may stay at that point. He should not get discouraged at all while improvement continues.

Everyone, a physiatrist is not a psychiatrist. A physiatrist specialized in rehabilitation and physical movement. In a tiny bit of defense of psychiatrists, they get more neurologic training that most other doctors except neurologists, rehabilitation medicine doctors, and neurosurgeons and others that specialize on the brain.

Personally, I have found that my neurologist understands some parts of this illness better and my rehabilitation medicine specialist other parts–such as the practical aspects of walking and minimizing energy expendature to do so.
Since he is in rehab, a rehabilitation specialist should be involved.

I work with a lot of physicians taking care of cancer patients. There is a great variation in approaches to patients–from some who are very positive “we are going to work together to beat this thing” to others who believe in being realistic and talk about the odds that someone will not beat their cancer or be left with permanent problems/bad side effects, etc. Some families also need hope more than realism and others believe knowledge helps them to be realistic and prepare for whatever life brings to them. Most families need both at different balances at different times. One of my favorite physicians was to me rather pessimistic in what he said to families, but he ACTED like the former group–doing everything he could to try to make the outcome good. My little bit of advice to you is to look at the direction of the care plan–if people at rehabilitation are working to help him keep getting better this is important no matter what the words may be. The worry is when they do not keep trying to help him to be better. A second tiny point is that sometimes patients and physicians do not match with regard to approaches and then it might be better to find someone with more optimism, experience, time to talk about concerns, whatever (even age since life-experience sometimes teaches one all we do not know–this lesson hits me especially hard each day after this illness crashed into my life).

With Hope for cure of these illnesses.

With Hope,

I agree that a physiatrist can be a wonderful help. A friend of mine is working with one at the moment and he is doing wonders for her soley because he knows about GBS and how to work with people with peripheral neuropathy.

Unfortunately we can debate the different approaches doctors take when working with patients all night, but to paint a more ‘realistic’ picture by giving the worst case scenario as was given to Bob is counterproductive, just as giving a happy ending would be. I think what really gets me is when a doctor won’t admit that this illness (as so many others out there) is beyond his scope of expertise and then proceeds to spread doom and gloom to someone who very much needs to hear both sides. Once again, this brings us full circle to how much is still not known about GBS/CIDP by many doctors and specialists – and in their defence, there is so much out there that they have to diagnose and work with, I understand how difficult it must be.

ali, well said. ain’t it the truth.

christine, no one knows how long nor to what degree any one gbser will recover. NO ONE! i did not start to make my best recovery till after month 26.

take care. be well.
gene gbs 8-99
in numbers there is strength

Christine,

There is a wonderful new book that has come out this year called :

[B]Guillain-Barre Syndrome[/B]
[SIZE=1]An american Academy of Neurology Press Quality of Life Guide[/SIZE]
[SIZE=1][/SIZE]
[B]From Diagnosis to Recovery[/B]
[SIZE=1]by Gareth J.Parry and Joel S.Steinberg[/SIZE]

ISBN 10: 1-932603-56-5
ISBN 13: 978-1-932603-56-9

The book covers pretty much what most of us know, and what a lot of our doctors dont. I got it last week as a help tool for families and patients who I see and speak with. It is clear, understandable and covers everything as far as I can tell. I will take a few exerts from the book about rehab and excerise, there is so much to cover, but I will just mention a few things – you may well know these already, so I apologise for repeating them if you know them.

[QUOTE]
Initial therapy may consist of passive stretching, followed by exercises against low resistance to build up endurance. Fatigue is common in recovering GBS patients, and strength and stamina should be increased slowly.
……….
[I]Avoide Fati[/I]gue. Vigorous efforts and longer therapy sessions will not speed recovery. Pushing muscles to a point of fatigue will lead to exhaustion and delay recover.
[I]Pain with Exercise[/I]. Pain may restrict rehabilitation and should be treated aggressively. Treatment options include various medications, heat, massage, and several others ……. Development of pain during rehabilitation may indicate that too much is being demanded of the patient and that a period of rest may be needed.

[B]Nerve Regeneration[/B]
The rehabilitation process does not improve nerve regeneration, and thus does not effect the retgurn of nerve supply to muscles (muscles innervation). Rather, a major goal of rehabilitation is to assist the patient to optimize the use of their muscles as their nerve supply returns ……

……….Strength ususally returns in a descending pattern, meaning that arm strength returns before hand strength and upper limb strength retunrs before lower limb strength. Usually the last function to return is the ability to raise the food at the ankle……

……. most recoveryt from GBS occurs within 2 – 3 years, but many patients report small improvements for much longer periods
[/QUOTE].

Nerves/myelin grow and an incredibly slow rate so nerve or myelin regeneration simply CANNOT be looked at as having stopped after, say for example, 6months.

Bob should be given rehab in the same way as patients with any peripheral neuropathy are given rehab. There is a difference in the way the therapists and doctors have to work with these patients, not the same as someone who has had a leg amputation, or recovering from fractures, sprains, surgeries etc. Particularly for the first number of weeks, patients hands, arms, trunk, legs, feet, neck etc should be supported by the therapist when doing exercises otherwise other damage can be done to muscles etc (sorry about all the etc.’s in here)

My fiance Ben was told it could be 1 -3 years before he was out of a wheelchair, but he was walking again after two weeks. I’ll never forget the stunned look on his neurologist’s face when we walked in for his appointment a week after being released from rehab (his neurologist hadn’t seen Ben during his time in rehab since he had had a physiatrist). Anyway, this was after three long weeks of not knowing if Ben would even survive the initial onset of GBS since it came so close to taking his life. I would have been happy hearing Ben wouldn’t be able to walk because during those three weeks, they couldn’t even tell me if he was going to live.

Good luck to your father!

Shannon

Christie,
I couldn’t agree more with the other GBS members. Each case of GBS is unique. The recovery time like any disease varies in symptoms. I contracted GBS in Feb 2005. I spent a month in ICU where I received IVIG then spent another month in a Rehab hospital but it took me another 6 months before I could walk with the assistance of a cane. I gave up that cane July 06. My Neurologist was up front with me and told me I could get better in a few months or it might take a year. He said eventually all GBS patients recover though they may have some residual effects. I hope your loved one is on the road to recovery. Take care and God bless.