Hey..So after a year on RTX my CRP is at 3 🙌🏼 better that 162.
I'm now seeing an Ortho surgeon to correct my hands, has anyone here had it done? How were your results, are you pleased with the outcome? I've wanted this done for years and it's finally happening, just a bit nervous and wanted to know other people's results, if anyone has had it done 😊
So, the surgery is to 6 my fingers and put my knuckles back where they're supposed to be, possibly replacing some of the joints, there will be screws and plates etc
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RAat13
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No I chickened out…my orthopaedic hand surgeon tried to persuade me, but after having had a carpal tunnel decompression my hands aren’t so painful so it isn’t a priority for me. But I am lot older than you ……at your age I would probably have given it more consideration.
To be honest I thought you would've had this done.My pain in my hands is okay for now, it's the deformities that I can't deal with. I stub my fingers because they stick out on one hand and the other I can't straighten my fingers anymore, my youngest is 3 so I need it done, but also to make me less self conscious of them.
It's not till next year but giving myself enough time to psych myself up for it, haha x
You chose the opposite to me, not the same op but three tendons gone on one hand and I had a young child like you and decided the recovery time was too much until they were older and more independent. Needless to say I never had it done as the time never seemed right, work etc. Good luck with your op, I hope it works well.
I had my thumb tendon repaired 12 years ago when my eldest was 9 months old, it failed, I have both gone in my thumbs, index finger and little finger, both big toes. So definitely not having that done again 😒 My hands especially my left are so bad I need it done, I'm in my 30s and by the time I'm 40 it'll be a closes fist.
I had my first hand surgery in 1985 when I was 35 and my son was 2 years old. The knuckles in my right hand were replaced with silastic joints and the hand realigned. In those days it involved a two week stay in hospital!
Good result but didn’t last as my disease was uncontrolled, in the pre methotrexate and biologic era. Had a second surgery on the right hand about ten years later, again a good result initially but did not last. Now both hands have severe ulnar drift and are clawed.
Do not regret having the surgery. Would advise you use a specialist hand surgeon/ plastic surgeon for best results. Am sure the procedures will have advanced tremendously since my early surgeries. It was also unfortunate for me that effective treatment for my disease was unavailable at the time so my joints continued to deteriorate. Have been on metho since 1988 but it was in 2008 when I was put on Rituximab that my disease became controlled.
I would encourage you to have the surgery as you are young and if your disease is under control the results should be good. Best wishes.
Thank you for this, I am nervous but I need it. My CRP is 2 and I'm in "Remission" thanks to RTX so I've got that going for me, I need to be able to do things and feel better about them, I'm so embarrassed by my hands it literally controls my confidence 😢 My youngest is 3 and my husband can work from home if I need him to so I have the support at home.
It took 21 years to get to where I am now and thos disease has taken so much already, if this surgery can make me feel better and function better I'm definitely going for it x
I really feel for you, being so young too. I haven't experienced surgery but am experiencing deformities in my right hand and I am right handed. I am at an earlier stage than you are. Can I ask you how long it took to get to the position of needing surgery? I am going to see an occupational therapist this morning to see what they can do with a splints to pull my fingers back to the correct position. I presume you have been through this stage. I wish you all the best with your orthopaedic consultation and future surgery.
So I've had it 22 years and my hands were the first to go, over the last 2 years they have got really bad but overall I'd say 12 years ago they started to drift and 3 years ago my middle finger on my right side now points in the wrong direction.
I have a new consultant who suggested I have it done, especially as I'm now in Remission.
Splints are a difficult one gor me, I have fused wrists from disease not surgery and the drift splints I have make them so sore, I have a nodule that really sticks out on my index knuckle so the splint presses on it. Tried plastic ring splints and made splints to try and stop them moving but ot was too late.
Hi. I've had it 22 years as well. I have had lots of problems in various places over the years but have been in remission for about 5 years now. Everything was going well then I had a major flare up and my hands got the brunt of it. My right hand in particular and I'm right handed. My whole hand is pulling over to the side and is quite painful but it doesn't sound anywhere near as bad as yours. It has been deforming for a few years but I never really noticed it until my texting took twice as long because of correcting my gobbledegook. 😃 My appointment with OT was very good. She did say it was deformed and the damage couldn't be undone but I have splints to hopefully help it from getting worse and lots of exercises to do each day, a small price to pay.
Hi I had my knuckles in my right hand replaced, my tendons realigned and a new wrist bone in December. A 5 hour op and intensive physio after which I still do daily but not as much now. I had nearly 4 months off work and needed a lot of help. I was the Guinea pig with a new type of knuckle replacement. Apparently there were 3 of us within a couple of weeks that had them. They told me that my results were the best of the 3. One poor ladies failed completely. My results are mixed tbh. One of the implants isn’t quite straight so I have a sore lump there. I can’t turn my wrist as much as I could because of the new piece and 3 of my fingers have drifted a bit already. On the plus they look much better than they did and the aren’t as painful and my wrist doesn’t dislocate now. I know of a couple of other people where it has been a complete success. It’s a big commitment on your part to do the physio so think carefully. Good luck 🤞
I'm willing to do the physio, I've other surgeries where I've needed intense physio, plus my husband can work from home I need him to.
Sorry if this sounds weird but could I see how they look now, after your ops?
The surgeries for me, as nervous as I am can only make them better, I can barely do anything with them now, my wrists don't move anymore as the disease have fused them, I have snapped tendons, fingers that stick out and get caught on a lot things which is awfully painful, my left hand wants to stay closed.
I appreciate your reply and I'm glad your surgery turned out mostly for the better x
hi yes hopefully photos will attach here. I had it done December 23. Mine were dreadful too hence having the operation so like you it was last ditch. Like I say I do know of a couple of people where it was a complete success so don’t let me put you off. Mine is a bit of a mix really but overall better than it was. I should ask a lot of questions about how long they have been using the implants. I was a Guinea pig with mine. I hope this helps and I wish you lots of luck xx
I think your age is very much on your side, coupled with being in remission.
I saw a hand surgeon to discuss knuckle replacement/finger straightening etc and eventually decided against surgery.
The surgeon was very frank with me and explained that it’s is only successful if the surrounding tissue is strong and firm, otherwise they will simply drift again within a year. After 25 years of RA but being about 30 years older than you, the surrounding tissue was very spongy so not a good sign.
I’d also just had my right shoulder/arm out of action after fracturing the shoulder in a fall. Practical limitations of having my writing hand out of action gave a real insight into how limited I’d be post surgery (wiping your bum with the ‘other’ hand is not the same, trust me!).
Finally, the fact that I’d have to pause drugs (eg methotrexate) during recovery put me off as I’d previously had to when I had my knees replaced and inevitably it triggered a flare.
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