Robert

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.

Jim

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.

Also handwriting is hard to do with a regular pen.
When Nate was in the hospital someone found the biggest fattest pen I’ve ever seen.
He could write his name after about 3 mos much easier than a regular pen.
The fat tools are great for arthritic fingers also.