Is there anyway to predict a prognosis?
AnonymousJuly 24, 2007 at 1:43 pm
I suspect that no one really knows but after looking at the research Dan put on another thread it is rather bleak. I was told by my neuro that I had 95% chance of recovery at 1 year. The study he had showed 72% of gbs at 1 year still had deficits.
I’m faced with a very big decision that totally depends on my prognosis. My partners have forced me to 100% overhead and I will maybe break even or high risk of actually loosing money. I’m not physically able to work anymore than I am. I am now very challenged working 6 hours a day and have given up all outside of work activities in order to perserve all resources for work. It is very large sacrifice for not earning any money. My family is suffering. When I don’t work for about 3 days in a role – I can play with kids, go short trips to Wal Mart, and do housework. I have looked for another job and because of the GBS I’m not very employable. I was offered a job today but they refused to give me a contract and would just pay me by the hour(a very low amount). This would never work because I can work hard(see 18 patients in 4-5 hours) but I can’t work long. I become ataxic after that time. So I’m stuck either continue to work at a loss or breaking even or quit. I would loose a patient population/practice I have built for over 11 years.
If I knew that I could work a full day 10 hours in 6 months I would hang in there. But, if there is no improvement I may as well give up and loose my career/income. I have not seen improvement since starting back to work 3 months ago- I have in fact seen decline in function because my legs are always pushed past the point of function.
If anybody can share their recovery experience it might help me with my decision. I do have axonal damage also. I’m 6 months post GBS. Loosing income/loosing ability to care for my family/Loosing hope , Dr. Shawn
AnonymousJuly 24, 2007 at 2:24 pm
Hi Dr Shawn,
I’m so sorry for your predicament and I’m probably no help at all but for what it’s worth when I first got sick I felt very similar. I was forced to leave a job I loved but could no longer function at ( Intl.Flight Attendant) I was very sad and kept thinking I’ll get my feeling and stamina back then I can go back to work. Well, I didn’t but staying home ended up being the best thing I could have ever imagined. I know that sounds harsh but for me, it really was a blessing for my family. We don’t have as many material things as we’d like, we sometimes live paycheck to paycheck, it isn’t a bed of roses BUT we have each other. My daughter really knows her mom, my patient husband doesnt have a tidy house but he does get a warm meal each night. Our true friends and Family have always stuck by us and life is good. Everything will work out you just can’t give up hope. I can tell you are a very able person and maybe there’s something else out there for you that you don’t even know about. I wish you strength during this time of decision making whatever you decide will be the right thing. Stay Strong and Be Well.
July 24, 2007 at 4:10 pm
Dear Dr. Shawn,
I am so sorry for your continued dilema. Today the GBS letter came, because we do not have axonal damage, I did not give full attention to the article, but there was mention of gbs with axonal damage. Regarding recovery, it does happen. I swear to you, Kevin’ s huge improvement to NORMAL, yes NORMAL was unexpected. I do not know how all of a sudden, diagnostically and clinically (EMG/NCV, reflexes, stamina, endurance ) everything just happened. So there is hope. We are exactly 11 months out since the first time he tripped and 101/2 months out since dx and first ivig. We have been through a psych dx, CMT dx, GBS dx, CIDP dx, and now GBS dx again (AIDP)
The difference is, or should I say differences are, Kevin is a child, apparently it is easier to heal. His inability to recognize the complexity of the current and future situations also in my opinion has aided in the recovery. Unlike yourself, who must worry about so many things, children, husband, career, practice, finances. Worries alone, in my opinion irritate the fatigue issue which I believe hinder the recovery.
Also, you are under huge physical stress. Kevin had no responsibilities but school, xbox, friends and sleep. Besides the responsibilities that you cannot give up, family duties, mom stuff etc., you have this added dilema of your practice and your career which is an extension of yourself other than a mom. It seems like your practice is very important to you because you have worked so hard to achieve it! School, investments into the practice, patient relationships. I cannot even imagine the stress you must feel regarding your indecision of which way to go!
Are you able to maintain your current lifestyle with just your husbands income if you sell the practice and become a stay at home mom? If not, are there things that you and your family would be willing to give up monetarily in order to gain what you might get if you stay home? I have said this to you before YOU WILL ALWAYS be a wonderful caring doctor! Now you will just be at home doctoring yourself and your family. You are not giving up your degree or your accomplishments, you are just thinking about taking a well deserved rest. If it is in the cards, God will work it out so that one day you will go back to a practicing doctor. Maybe right now he is sending you a message that it IS your time to stay home and nurture yourself and your family. I really do believe things happen for a reason, we just don’t always see or understand the reason right away!
Regarding your statement about not being able to be hired because of GBS, right now, I might see their point, you have physical limitations. Perhaps if you take a well needed rest you could recover with in a year or so and be ready to search again! I can’t imagine a gbs dx would be held against you if you are recovered!
You really sound like you are at the brink of the obvious decision, you just seem a little nervous, who wouldn’t be. You realize you are loosing money, your partners must be anxious regarding to have to pick up what you are not able to do, they too must be wondering about both their future and yours, how long can you afford to operate at a loss.
On the other hand, if you temporarily give up practice (maybe you could teach or lecture?) you could gain your stregnth, health, confidence to excell in a whole other capacity (stay at home mom, it has more rewards than you can imagine). You could concentrate on your family and worry about just your family. That would be priceless compared to all that comes with the responsibilities of a physician!
I know you are a strong woman, to have made it through med school, marriage, childbirth etc. I know you will make the right decision for yourself, only you know what you want and what you can handle. Whatever you decide and however it works out, we all will be here to listen too you! If you ever would like to talk, pm me and I will call you.
Dawn Kevies mom 😮
July 24, 2007 at 4:23 pm
I just re-read the last paragraph, YOU ARE ONLY SIX MONTHS out and not resting! KEvin was at 10 1/2 months with no where near the amount of activity you are doing. You have to rest! You also said it yourself, you have noticed a decline since you started back to work. You know you have to rest, your body is telling you, so now you have too! We have to get Gene to respond so he can give you one of his very good short to the point rest rest rest more rest lectures!
I thought of something else, if the doctors you are working with are not sympathetic to your needs, which they do not seem to be, I would not even want to work with them! It would make me wonder what type of care they give their patients. You are already one up on them, because I bet your are now a more sensitive person and doctor! Now that is priceless!
AnonymousJuly 24, 2007 at 4:56 pm
Dr. Shawn, I really am feeling for you. Being a business owner myself–formerly in a partnership with 10 employees (currently solo) I can imagine your dilemma–at least a little. And I didn’t invest all the time and money that Med school requires, either, which makes your decision even harder. I remember how impatient my partner was when I was coming back after maternity leaves and needing to take time off to go to pediatrician, etc. He wasn’t very supportive. You must be under huge stress. (which is unavoidable but probably not aiding recovery…)
The only thing I can say is, when my daughter went back to school, her recovery basically leveled off. Though she did keep progressing, slowly–and she was doing 1/2 days only, and in a wheelchair. It was a balancing thing, because being back in ‘normal’ life and seeing friends kept her in good spirits. However, she’s made much more progress since school’s been out, now that she has more time to rest AND exercise. I wish we had another 2 months before school started.
What I am trying to say is, maybe you would progress faster too if you were not having to put so much energy into the practice. Is it an option to use a wheelchair at work? I know it would feel like going backwards, but, if you decide to try to keep working, it might conserve your energy a little. It also might let your partners know that you aren’t kidding around. You really are still IN RECOVERY. If you walked when not at work, you’d still be getting exercise. It seems everyone talks about having huge residual effects from over exertion. Maybe a wheelchair would keep you from over-exerting to the point of ataxia. Same thing happens to my daughter if we push too fast in PT/exercises. She gets all wobbly and weak.
I’ll keep thinking of you and hoping you find a solution that works for you and your family.
AnonymousJuly 24, 2007 at 5:42 pm
Hi Dr. Shawn: As you probably know noone can predict recovery and how long it might take. I had axonal damage and, after 26 months, am back in a wheelchair. I have not improved in over a year and in some ways feel my legs are weaker than they were. On the other hand I know a younger man who was totally paralyzed for five years and now walks without a cane. Recovery can come but as others have pointed out you need to rest now and take care of yourself. I feel for your dilemma and as I told you before I had to cut my practice in half. If you must decide today about what to do based on how quickly you will recover, I think it realistic to suppose you will always have some residuals and working 10 hours a day in six months seems a stretch. Noone can predict your future nor really give you good advice, but if it were me I would cut my loses and try to work somehow within my limits. This disease sucks but I would hate to see you put yourself in a position in which you were always pushing past your limits. I am a Jungian Analyst and that means I am a psychoanalyst who works with dreams. Dreams reflect a powerful inner wisdom and my best advice to you would be take some time and listen to your heart-see what you dream and consult your feelings rather than your thinking about what is right for you in this situation. If you trust your gut rather than your head you are more likely to make the right decision. Wishing you the best, Jeff
AnonymousJuly 24, 2007 at 8:44 pm
Uncertainty is another difficult aspect of this illness. As a suggestion to help you find an answer, here’s an idea: Imagine yourself as the physician of a similar patient. You have been treating this person – a professional with many years invested in his trade, for more than 6 months when he asks your opinion of his long term prognosis. How would you respond to him, knowing what you now know about gbs? Do this on a day when you have time to relax and reflect on your patient’s situation – sort of a meditative exercise. Let your mind explore all his options. Thoughts may come to surface that open doors to opportunities never before considered.
Here are a few titles of articles I found relative to your post:
Recovery patterns and long term prognosis for axonal Guillain–Barré syndrome
Prognostic significance of electrodiagnostic studies in the Guillain- Barre syndrome
Indicators of rapid clinical recovery in Guillain-Barré syndrome
Prognosis in the acute motor axonal form of Guillain–Barré syndrome
Connecting impairment, disability, and handicap in immune mediated polyneuropathies
Residual health status after Guillain-Barre syndrome
All of these full discussion articles can be found on [url]http://jnnp.bmj.com/[/url]. Registration is required – subscription is not. I have not read these articles; a quick look at them appears to offer clues to the many outcomes of gbs. Lots of other articles are available on the site.
Personally, I think you are doing fabulous considering you are only 6 months out! I have absolutely no experience w/gbs, and so not qualified to even give a personal opinion, but from the wealth of information and support on this site, I also think you are pushing too fast by making demands on your body. Just think, in this first year of recovery, you may endanger your ability to fully recover (even 5 or 10 years down road) by not letting your nerves heal/regrow/etc. Healing may come – just not when or how you expect it to.
Remember our mantra: NEVER GIVE UP – NEVER GIVE IN!
AnonymousJuly 24, 2007 at 11:23 pm
Dr. Shawn, You are a patient 1st, you are a dr 2nd! You are a MOM, a Wife, a Friend, YOU ARE IMPORTANT to many more people then just to a practice. You can live without the stress alot better then you can with the stress from the other partners in the practice. I haven’t been able to work at the hospital(med records) since Aug 05, I am the other half of our household income, now all I can do is collect a portion of what I made before. I enjoyed my job, I worked midnites(3rd shift), but with all my relapses there is no way I can go back to work, at least not until I recover alittle more. We are financially devastated, but we have each other and we are learning to make ends meet somehow. There is more to life then working, if you don’t take time to recover while you still can recover, then what kind of a life will you have? One of the toughest things to except with this syndrome is the limitations, but look on the otherside, if you don’t limit yourself now, there won’t be a life to enjoy later without limits. The tortise wins the gbs race, the hare finishes last every time. Why not take the time to recover now, you know there is always a need for drs, somewhere, someplace. Who knows, maybe you’ll get in with more personable, caring partners. Please don’t give up hope. Keep a positive attitude! Hugs!!!
AnonymousJuly 25, 2007 at 1:15 am
I am humbled by all the supportive responses. I REALLY needed to hear these things. I hit rock bottom today (1st since my discharge from hosp) and it is so suprising to me how much it meant for me to take care of my patients. How can I not take care of my 50 y/o dying from lung cancer (never smoked), my art teacher undergoing chemo for ovarian ca (that I found), my new Mom’s with their babies, etc…. I can’t abandon them. My husband makes a good living and we are so fortunate that we could go without my income(with changes). But, that is only a small thing compared to loosing my patients/practice. I tuck them under my 5′ 2″ wing and take care of them as best I can. Almost all my patients have asked/worried/prayed for me. This is sooo hard for me. I would love to do this part time but it is not possible.
Joyce- I’m so sorry you had to give up your job. But, Mom is #1 job and I think it’s great that your family has you. I already felt quilt before GBS and my Mom says this is maybe God’s message to me that I need to slow down and enjoy my children. Dawn-Yes, anxiety is how I feel. So many big life decisions. I’m so glad Kevin is doing better. I have prayed that I do God’s will. Hard for me to give up this control. Cincymom- I’m so glad Lydia is doing better this summer. I agree it really helps to rest. I’m truly a different person(almost normal)when I have 3 days off in a role. Thought about a W/C but to hard to manuver in my rooms and I work to fast for it to be practical. Jeff- I have been reading your posts and I am thinking about you. Hopefully the w/c will give you the rest you need to recover. I will try to remember my dreams and let you know. CD- I have been googling your articles for 1 1/2 hours and very helpful. Thank you. Cheryl – Thankyou for the encouragement. I feel so much better tonight. I’m trying to put everything into perspective and ACCEPT my limitations and hope for the best. I’m going to work tomorrow(can’t cancel on them now) and take it day by day. Also helped to hunt easter eggs in the yard tonight with the kids(I sat on pourch). The small joys are so important. Thank everybody for all the support- I really needed it. I pray that we all find healing and acceptance. Shawn
AnonymousJuly 25, 2007 at 2:00 am
I have no idea if this is feasible, could you work a.m Monday, p.m. Tuesday, a.m. Wednesday, etc. I have found that if I have a complete 24 hour period at minimum I can recover well. Just a thought, I am so sorry that you have to deal with partners that don’t understand, they of all people should.
Your in my thoughts and prayers,
AnonymousJuly 25, 2007 at 5:50 am
Dr. Shawn, I was doing quite well recovering from GBS/CIDP (whichever it is) until I decided to try to go back to work and then I hit a plateau and stopped improving. Even at only a couple of hours a day I was spending days recovering but when you think about it you aren’t just putting in two (or six) hours a day. You are spending energy to get ready, drive there, chat with your coworkers who constantly ask how you are, feed yourself at work, give 100% of your mental energy to your patients, drive home, and do whatever evening house chores you feel necessary – like dinner. It’s not just as simple as seeing your patients, there is much that goes into preparing you just to go out. Sometimes I’m so exhausted after just taking a shower that I go back to bed.
Like you, at six months, I thought I was improved enough to get my life back somewhat but I think all that did was delay my recovery. I stopped improving and started having relapses again – you know those shocking pains that feel like a taser? And while I didn’t think I was doing enough to exhaust myself I was wrong and paid for it many times over. I explained it to my doctor using this analogy – For a long time after my ICU visit I had no money and no credit card but then after about six months I had a small balance was granted a credit card with a low credit limit (say $500) and a really high interest rate. I could spend my future energy up to a point but I would pay it back 3 or 4 times over again. Sometimes it’s worth spending the energy and building up a deficit because you need it mentally but you can’t live your life with a balance on your credit cards (so to speak) or you never make any progress on building your own financial future. Before this neuro-nonsense I got up every morning, walked a mile or two, lifted weights, worked an 8-10 hour day, came home and played with my dogs every evening. That all changed, I went bankrupt energy wise, but I am slowly building my energy account back up again and as long as I remember that each withdrawl has a penalty that sometimes doesn’t show up for 12 hours I can keep fairly well balanced.
So I worked out that analogy and my strategy over a couple of months and I’ve been steadily getting better since then. No I still can’t go back to work yet but I am SO MUCH BETTER than I was at six months I know I will be back to work within a few months. Although financially it has been difficult for us to lose my income, imagine how difficult life would be for your husband if you never got any better at all, or you got worse? Financially speaking it’s never a good idea to live outside your means – for those of us recovering from neuro-madness it’s not a good idea to live outside your energy means either.
That being said I still do push myself to do PT every day because as I told my neurologist I don’t want to become a self-induced cripple either.:rolleyes:
Good luck with your decision, it was hard for me to quit working but they’ve kept the door open for me to go back when I feel well enough and my recovery has gone much smoother since I am a full time patient now. If you were my doctor I’d tell you to take the next six months off to focus on yourself and not worry about me and my illness. 🙂
AnonymousJuly 25, 2007 at 6:19 am
i went back to work at 6 months post GBS and i consider myself to have made a pretty remarkable recovery by GBS standards. I would say i am 99% recovered and able to walk normally and have very few residuals etc. I only work 3 days a week 6 hours a day (which is what i was doing before, so not affected by GBS) and believe me that is enough … and i only work in an office, nothing too stressful mentally or physically. I hate to think what i would be like if I tried to work full time on top of being mum etc, let alone a job as stressful as yours.
I can understand why it would be so hard to give up everything you have worked so hard for … and i am sure it is the patients you are most concerned about rather than the money.
No one knows what the future holds for you, but i think there is a point where you realises that your recovery has plateaued and maybe this is as good as it gets. When you reach that stage you need to find the balance where you can do all the things you want/need to accomplish without wearing yourself out so much that you start to go backwards … easier said than done.
Sorry not much practical help. Is there any chance you could start a private practice from home and only take the patient load you can handle. it soudns as though your patients would follow you wherever you go and you wouldnt feel like you were letting them down.
AnonymousJuly 25, 2007 at 12:34 pm
I think Jerimey has a great idea. When I had my first bout of GBS 20 years ago, I was teaching 7th grade science in a middle school. I went in on MOnday and presented the new chapter/phylum and then did plans for the following day. I had a sub for Tuesday and Thursday. I retaught what the sub did and then gave the test on Friday. It worked like a well-oiled machine. The superintendent gave me a bad rating. I told him to look at what I had. He said that if I wasn’t hospitalized, I should have been in school. I left after that year and moved to Florida. It was a sick building. He ran into my brother last year and sang my praises as to my teaching. He was right – I am an excellent teacher. But the absences got me a bad rating. We need to call this Polio’s cousin so people will wake up.
I wish you well, Dr. Shawn. I truly believe that we do not get this devastating illness randomly. I think it is meant to slow us down or put us on another path. As I have said before, Disease does for us what we won’t do for ourselves. I have decided to leave teaching rather than chance a return of the GBS. I am going to decide what I want to be when I grow up and do that!!
AnonymousJuly 26, 2007 at 5:53 pm
Focus on your health…it’s only been 6 months. If you’re able to work, you should be able to hit the weights, pool, etc…the body has the ability to increase its’ strength & endurance, but you gotta put the time & effort into it…along with plenty of rest. Being a physician, you’ll always be able to provide for yourself & your family – focus on your health for the time being. Good luck.
AnonymousJuly 26, 2007 at 6:57 pm
Jerimy- I agree with your idea. I have been kinda doing that. I have been starting a 8:30 am and working through lunch and finishing after 2-4 pm. If I break for lunch I run to far in pm to walk well. I’m going to work 5 part days instead of my previous 10 hr 4 days a week. I lost my day off but I more able if I spread out. My accountant Figured I had to see 16 a day to break even so I’ve had to step it up – very challenging for me now! Julie – that is the best description I have heard and exactly right on. You described my life exactly. Sounds like you relate. Yolande- You are right I feel sooo responsible not to abandon my patients. Thank you for your encouragement. Carolyn- My Mom said it was a blessing that I’ve had to slow down. I’m not really sure I agree. But, she has a point. I’m trying to find a new path. WMoore- I had to stop all exersise since I started back to work. When I tried to exersise when I came home my foot would drag. I used to(before GBS) jog 1 mile a day, ride horses, and yard work. Now I just rest rest when not at work. I have no reserves left. Work consumes my whole credit balance. I really wish I could devote my energy to recovery.
Thank you all for the help. It is so encouraging. Shawn
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