Anyone else with hand flexion problems?
AnonymousFebruary 13, 2007 at 12:28 pm
I saw my physiatrist yesterday for a two-month checkup. He is very happy with the progress, as I’ve been diagnosed with axonal GBS. I am practically walking on my own with AFOs, and rarely need to use m wheelchair. Although my calves and hamstrings are weak, the braces give me lots of functional independence.
My problem lies in my hands. Instead of clawing, my hands are “frozen” open. I do have movement in my thumbs and my forefingers, but my three smallest fingers are very tight. I also cannot move the joints at my knuckles. My physiatrist referring me to a hand surgeon, because he feels that the splints I have used to increase flexion have not worked very effectively.
I need some feedback from anyone who has experience with similar issues surrounding their joints, especially the hands. I’m nervous about having my hands operated on, I’m even more nervous about living without the ability to perform final motor skills.
By the way, I’d like to say hi to all the people who were in Phoenix in November. I haven’t had a chance to tell you how important your input and support truly was to me.
Don’t forget: aqua therapy is the best therapy there is!
AnonymousFebruary 13, 2007 at 6:19 pm
Hi, my son Nate had burning pain in his hands before he was even diagnosed with GBS. He could barely use his hands at all in the beginning since they were half numb and half burning pain. He still has a hard time getting his fingers to straighten out sometimes, even 14 mos later.
They also still hurt, worse at times then better sometimes.
His fingers shake a lot also.
He can manipulate a fork or spoon ok now but still has a hard time with a pen and a really hard time typing.
His fingers just don’t cooperate with a keyboard.
His hands are also cold a lot and colder weather makes them hurt more and stiffen.
From what I read, problems with hands and burning pain occurs in 2/3 of GBS patients so I guess its fairly common.
AnonymousFebruary 13, 2007 at 6:25 pm
i’m 5 1/2 years post gbs. my left hand and both knees are partially paralyzed. i’ve had several emg’s to verify that my left hand and knees will never be as they were prior to the onset of gbs. i agree that aqua therapy is the best, but it won’t bring back what you’ve lost. i would see a neurologist or as i see a neuromuscular specialist and let them decide if you need surgery. i’m not a dr., but i’m guessin’ you don’t. all the best to you. keep us posted on the result.
AnonymousFebruary 13, 2007 at 10:01 pm
I also have axonal GBS, dx 5/05, hands still problem, can type, write, eat much,much better. Had same problems with index, ring and small fingers not spreading apart. Hand exercises help. Still do them. Glad you’re making it around without wheelchair. I use a walker or 2 canes now and do aquaaerobics 3x wk, which helps a lot. Not sure if I would want surgery on my hands. Good luck.
AnonymousFebruary 15, 2007 at 7:49 pm
It is way too early in the game to be even considering surgery on your hands. You are only 14 months post GBS. Sounds more like you need more therapy to get those joints moving again because you must not have gotten the right therapy to begin with. I had very little use of either hand at the two year mark, but all joints were very flexible (due to very good therapy) and then made the mistake of allowing two surgeries on my right hand out of desperation to get some use of my hands. They totally screwed the hand up! And the kicker is that after I had the surgeries I started getting the use of my hands back very slowly. When I got into my 4th year post I became able to do many things even though my hands are very weak. I am over 20 years post and still do not have a lot of fine motor skills, but can do just about anything I need to if given enough time to do it. The right hand is nothing but a claw due to the surgeries, but I still can do a lot with it. The left hand is the best because I would not let them touch it after the botch job they did on the right hand.
Get those joints loosened up and try to use your hands as much as possible all the time, even if your fingers don’t do what you want them to do. Most of all, give your hands time to come around and stay way from that knife. This is just my opinion…
Good luck in what ever you decide.
AnonymousMarch 11, 2007 at 8:03 pm
I was able to get most of the use of my hands back after my CIDP was arrested & I allowed them time to heal. But my hands were pretty bad for the first 26 months, unable to do much of anything at all. Now I can do virtually anything I need to do with them, but I do some things a little differently. For example, I cut my fingernails with toenail clippers, as I can grasp around them like a fist. I think it is way to early to let them operate on your hands.
AnonymousMarch 11, 2007 at 9:14 pm
I just wanted to add my pennyworth.
I’ve read of others who have met various problems, such as yours, following GBS.
You are a little over a year from GBS and considering hand surgery. Even though GBS also stands for Getting Better Slowly? Will the surgery not be available in time to come?
I am totally in agreement with Ghost Bear.
The hand surgeon you saw is exactly that – a hand surgeon, not a GBS expert. I can quite understand that a hand surgeon MIGHT be able to help improve some permanent physical disability. But you are only just over a year from GBS – so your present disability is not necessarily permanent.
You don’t know yet that you will have to live without the fine motor skills.
Whilst I can fully appreciate your wanting to get those skills back I do believe you need to think carefully. Why not give it time? I honestly think that you might be in a dangerous place and I urge you to read again and take to heart what Ghost Bear said.
The ‘tough decision’ you mentioned is perhaps – have surgery or not? But what about – have surgery now or postpone it? Hand surgery is something that you could consider down the line.
You mentioned that you are “nervous about having my hands operated on” and “even more nervous about living without the ability to perform final motor skills”. But where is the guarantee that surgerty would work? There isn’t one. And without risking surgery, your hands might improve.
I realise that is it easy for me to pontificate on what you ought to do and I know that I am not in your position. So whatever you decide to do, good luck.
AnonymousMarch 12, 2007 at 7:47 pm
What surprises me is that any doctor would even consider putting you under anesthesia after having had GBS.
My son nates doctors all have told him that you run the risk of having a total relapse from the anesthesia.
His foot deformity would normally be corrected by surgery and his Ortho said he would not even consider it.
I would really do some checking on that aspect of it. Why run the risk when you could still get back good use of your hands? Your hands could get better with time. Most do.
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