AnonymousMarch 14, 2009 at 11:54 am
I am now 5 years post onset -(age71)- Everyone (medical field) comments that I had a very severe case -Respirator 4 months the full deal -now walking with a walker but still need more muscle control in knees etc. Driving with hand controls.
My biggest issue however are my hands – my grip is extremely weak – wrist flexing is also weak -a recent emg test confirmed the upper elements of arms and legs seem to be responding well but hands and feet show some progress but very little –they are sure the axonal damage was quite heavy — and although we are all encouraged to know that the body will do it’s best to overcome that we all are aware that it is a slow process.
Some folks have advised me to inquire about some new surgical techniques that may be able to enhance my grip etc Electronic implants to stimulate the muscles etc . I know that some of these procedures are used in some patients to counteract “foot drop”
I am wondering if anyone might be able to give me any advise as to possibly their efforts to solve this problem — or if anyone might have some suggestions -surgery, adaptive gear etc .
It’s been awhile since I have posted any thing –but I would like to say that all in all things are going well –trips,cruises, family excursions — and even after 5 years I’m still doing rehab (land-aquatic) 2 days a week along with fitness gym 2 days. My therapists (Danbury Hosp Rehab) have been just wonderful and continue to keep me always focused on the long term goals.
AnonymousMarch 14, 2009 at 7:56 pm
God Bless you! I too had GBS bad, but was only on a respirator several weeks. I wish that I could give you some advice on this but the only thing I know to do for hand weakness is to wear a wrist brace. Sometimes it helps me. I have never heard about the surgery you mentioned but, in your case, it might be worth a try.
AnonymousMarch 15, 2009 at 2:16 pm
It sounds like you are dealing with a lot of the same problems that I dealt with 20 years ago and still dealing with now. Below is what I wrote concerning hand surgery a few years ago and my thinking has not changed a bit since.
[COLOR=”Blue”]I feel that the doctors I had were more concerned with experimentation than my welfare. The surgeries I mention were performed in 1988 & 89.
After two years I was desperate to get the use of my hands back. I had no movement in the thumbs and could not extend my fingers. I could drag my fingers open and then close them around what ever I wanted to hold onto. I was referred to a Hand Specialist through my Occupational Therapists. This specialist told me that I would never regain anymore use of my hands than what I already had. He said that after 2 years there would be no more improvement. So, trusting in his knowledge, I consented to having surgery on my right hand (I’m left handed). He actually wanted to do both but I said no to this because I remembered what it was like to have no use at all of my hands, and unable to do anything for myself. Turns out that this was a wise move on my part since my right hand ended up being a very screwed up mess after two surgeries. I then found out that after two years your hands can come back to some degree. I can now use my thumbs and am able to extend my fingers completely on my left hand. Although I have lost most of the strength in both hands I can now do almost anything that does not need the use of a lot of fine motor movement or heavy duty strength. I mean, forget about picking up a coin off the table or opening a packet of ketchup at the local fast food restaurant! The surgeries that were performed on my right hand hampered its use considerably. It’s a pretty good claw now! I would have been able to do a lot more if I had decided not to have these surgeries. The doctors wanted to do another surgery to try and correct the damage that had been done, but I decided that I did not want to be a guinea pig anymore. I guess what I want to say is that it took over 5 years for me to get the use of my hands back to any degree and if I had it to do over again I never would have let a doctor start cutting me.[/COLOR]
I was a little over 40 years old when I allowed this to happen and as mentioned above, it was back in the late 80’s. Perhaps things have improved and new techniques have come about since then, but I don’t think that much. The best thing that I did to improve my hands was to just use them as much as possible in everyday tasks. This helped me more that anything else. I hope that I have not discouraged you as that is not my intent. I just want you to know about the pitfalls of allowing a knife to be used to solve your problems with your hands.
Good luck to you.
March 16, 2009 at 3:38 pm
I am also 5 years post onset and have identical problems you do. However, I would take Jim’s advice and avoid surgery. There is not surgery that can restore the nerve (axon) or myelin sheath….that can only be regenerated with time. I am still noticing improvements in my feet and hands, though slow and small, but I continue to be positive and hopefull that it will get better. Best wishes to you for continued recovery.
AnonymousMarch 19, 2009 at 5:31 pm
Yikes, Robert. I went a full year not feeling my hands, which was an issue in that I play guitar. I wish I had some great information for you, other than groping beautiful young women is great therapy for the hands! I trust you are in therapy, that they have shared with you what devices and technical guff might be available? I still use the therapeutic putty prescribed to me as a part of hand strengthening exercise, which does nothing for the damage. Neurological damage is tough to treat, for I have not learned of any current surgeries that would help in your situation. It seems many of us are left learning how to work with our damage, to make the best of it by means of ‘energy resource management’, etc.
/a trained monkey may not help, but it sure would be a fun thing to watch!
Here is a silly article, which may help cheer you up. It is entitled: Odd News: Hand Guns as Medical Devices?
AnonymousMay 12, 2009 at 2:33 pm
I’m new around here, this is my first post. I’ll be posting my story in a day or so.
Robert, sorry to hear of your troubles and I admire your continued positive attitude.
Jim, thank you for your post, I was considering making enquiries about surgery; I won’t bother now.
Personally, I’m 43 years old. I had an attack of GBS in November 2007, so I’m 18 months into recovery.
I was never on a ventilator and I was only in hospital for a week. It came on suddenly, I was eating dinner, then it felt like I’d been drugged, arms/legs felt week, I collapsed on the floor. Next day hospital with fluids as I could hardly make my arms move. 4 weeks later I want in for imunuglobulin for 5 days. Now I can run and play badminton again and take long walks around shopping malls etc.
However, my left hand has serious muscle waste (left arm/hand were the first things to go in this acute attack), and left hand even up until a month or so ago, continues to lose muscle waste, but what I can do with my left hand is making tiny improvements.
I saw a neuro today, who wants me to have another ENG test to check to see if I don’t now have the CIDP variant of GBS.
Good to know hand surgery is questionable, also good to know that the so-called ‘2 years to total fix, then no improvement’ is not necessarily true either.
My heart goes out to everyone who has had GBS or CIDP variant; continue to be positive, even though I myself am finding the will to even live very hard.
AnonymousMay 12, 2009 at 8:36 pm
They have me in hand braces for my problems with my hands and it does seem to help quite a bit with the pain and relieves some of the night pain. But GBS might be different than CIDP. I hope you get better soon and wish you my very best! Nice meeting you in here! Hugs
AnonymousMay 13, 2009 at 7:54 am
I am happy to hear that you are not considering any type of hand surgery at this time. You still have plenty of time for your hand to come back. Just keep working with it everyday and try to do the many normal things you did with the hand before GBS. I do hope that the ENG does not show CIDP and you have continued recovery.
AnonymousMay 13, 2009 at 7:58 am
I too wore hand braces on both hands at night for 2 years post GBS. It was not so much to relieve the pain but to keep my hands from becoming a couple of claws. I had excellent therapy on both hands before I opted for hand surgery and now I do have one hand that is in good shape because of the great therapy I did receive. Hope the pain subsides for you.
AnonymousMay 13, 2009 at 3:48 pm
Hi Jim! That is what one of my hands is doing. Getting a clawed look! I never knew what to call it until you mentioned it. My left hand looks okay but my right hand fingers started drawing in so the doctor placed me in the braces to wear actually whenever I want to wear them. I wear them at bedtime because they relieve the pain for me. One finger is totally ruined and won’t straighten out at all. I also have stocking glove feet whatever that is. Noticed when I read the Neuro report they mentioned I had stocking gloved feet. My body has changed so much and I see the changes but didn’t know what they called it! LOL! I still have alot to learn! It seems like I alway’s have something new too right when I think things are going great something else pops up. I guess my old age is just catching up with me huh? LOL! Hugs
February 15, 2017 at 11:35 am
Please updates on hands questions.
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