cerebral palsy on right side.. had wrist fusion..not happy with it..what now?

cerebral palsy on right side.. had wrist fusion..not happy with it..what now?

hi. I'm rob, 32 years old, married with 2 children. Basically I was born with CP. I suffer with it down my right side. I have worked hard on it all my life and a lot of people don't even realise I suffer with it. I have had to wear hand splints and a leg brace. nothing has ever stopped me..

Cut a long story short I looked into easing the pain in my hand as my wrist was pulling to one side and causing a lot of pain. I was able to use my hand with restricted movement in my fingers and my thumb always stuck in. I also had grip, but still in pain and with my wrist bending out it was uncomfortable.. I would wear the odd splints but nothing really helped. I was advised about wrist fusion which would ease the pain, make my wrist straight.. ect...

I spoke with the surgeon and went ahead with the procedure. After a lot of pain I was recovered and felt very happy with the results.. (so I thought at the time) An to be honest I wasn't given a lot of time to think things through after the operation as at the time I spoke with my surgeon I hadn't totally recovered. (yes it looked better but not to the point of me realising my fingers were very restricted and I would be unable to use them) I knew my wrist would never rotate and bend again. That isn't my problem.

2 years later I'm finding the wrist fusion very difficult to live with, I am even more restricted in what I can and cant do as my fingers are now very tight and are always bent in, My hand looks fragile. My grip is there but to get my fingers straight is almost impossible.. my thumb is also fixed which tends to move in under my fingers an not move. I used to use my hand as much as anyone else and now I barely look at it or use it (as I cant)

This is very uncomfortable, more so than ever, if I could turn back time I would never had gone through this. My surgeon had advised me before that once this is done it cannot be reversed. (I hope this isn't true)

I am in process of speaking to my doctor to see if there is anything I can do to get this removed. I just want it all back to normal (or how it was anyway) Does anyone know any info on this at all? I don't want to give up.. It was a big risk that I took and I strongly regret it.

Hope this makes some sense and even better if anyone can advise me.

Rob

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  • Hi, I think the information you had regarding the surgery not being reversible is correct as they alter the joint slightly to fuse it - my toes were fused on one foot many years ago to stop them curling up so tightly. However, I would have thought some intensive physio might help you get some useful movement back in your fingers and your GP ought to be able to refer you for that. Good luck - lovely pic of you and your son :)

  • Hi Rob!!!! My name is Chris. I was also born with Cerebral Palsy. I know what you're going through. Like you, Cerebral Palsy affects the right side of my body. I used to walk on the side of my right foot but I had a foot operation a year ago and I'm walking better than I ever have. I don't turn my right foot over anymore when I walk. My hand however, is a different story. My right hand is bent at the wrist. I don't have any pain in my wrist but m hand is stuck in a bent position. I recently went to see a doctor in Syracuse, NY about fixing my hand. He said he wants to fuse my wrist but I'm having second thoughts. I want to be able to use both of my hands like everyone else. I'm also tired of people staring at me everywhere I go just because I look physically different. He said that I'll be able to have better use of my fingers. I want to do the wrist fusion surgery but I'm also scared that my hand will be worse than what it is now. I just want to look physically normal and be able to do things with my right hand that I couldn't do before. I also want to have children someday and I want to be able to hold my child with two hands. I'm just not sure what to do. Any advice would be appreciated.