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

[rob2114]

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

[Bongo64]

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

[rob2114 in reply to Bongo64]

hi Bongo thankyou for your reply, indeed its looking like theres no reversal from the fusion. i am currently pushing for extra treatment for my fingers.

[CHRISALLEN3285]

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.

[rob2114 in reply to CHRISALLEN3285]

Hi Chris

It is unfortunately a very hard decision to make. Also as im sure you are aware every cp sufferer suffers in different ways.

Just be sure to think long and hard as to all the pros and cons. i like yourself just wanted to look normal and be able to use my hand as much as i can. i will say that i cant actually fault the fusion with regards what my hand now looks like... as it is always straight now. i unfortunately struggle with movement in my fingers. when i am relaxed its bareable and functionable ( not as much as good side) obviously. they just become tight when i try too hard or i am anxious.

When i think back to how i felt, about how my hand looked before fusion i was always very paranoid about what it looked like. so now its straight i do feel alot better in myself when out.

Hope this helps you with your decision, you will find your hand more useful in ways that you never had before. But you also have to bare in mind it can cause other problems as ive found. but never give up the fight as ive found theres things that can help us move forward.

take care

[Needtohelp]

Hi, hope you don't mind me asking but I'm the mum of a young cp child, nearly 8, who has quad cp. She has fairly good hand/arm function in left, but right is more of an issue and she can rest her hand back in on itself, so resting on outside of hand when crawling, rather than flat hands, (she's a non walker, she can correct this when reminded though, she also can put her thumb in a little, think term is aduct (?) but again can at this stage correct it easily if reminded.

Wondering if you both, Chris and Rob had obvious visual hand issues as a child or if they got more obvious/pronounced as you got older? Were there things you did as a child that help with gaining better hand function or know now? We are uk but due to the overall budget cuts in nhs means we don't get proper advice on things like this from our nhs OT just bounced around by with comments like splinting is not her remit. Not sure if my daughter needs it, but we have no hand splinting or any attention given to it, really just told children with cp can have abnormal movements but that's normal for cp so it is acceptable. (!). Don't get me wrong this isn't about trying to get my child to be 'normal', I just want to do the best I can for my daughter as she grows.

Although fairly mild an issue at this stage, any iinsight and advice from adults with CP is really appreciated.

[CHRISALLEN3285]

Well guys I went ahead with the procedure and had wrist fusion surgery on August 7, 2017 and I can tell you from my experience that it was huge mistake. I can't even turn my palm face up anymore to wash my hand. I'm also having trouble with my thumb. It gets stuck underneath my other fingers and I have to use my pointer finger on my left hand to get it out. I'm also having trouble sleeping with the wrist/hand/arm. Before the surgery my hand was bent at the wrist and I could lay it down on the bed or floor. Now I have to lay down with my wrist/hand/arm with my palm facing up towards the ceiling. I cannot lay my wrist/hand/arm down like I could before. If you are thinking about getting a wrist fusion don't do it. My hand was bent at the wrist for most of my life and had I known that I would have trouble with the things I mentioned above I never would've gone through with the wrist fusion. I was happy at first because of how straight my wrist/hand/arm is but now I regret that I went through with the wrist fusion. I'm going to see if I can get it reversed and see if the doctor can make my wrist/hand go back to the way it was before.