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Wrist To fuse or not to fuse...

gryphon

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Hello, I'm new here. Kinda stumbled onto this place while on a desperate search for information/stories while I try to make a final decision on what's going to be the next step for my wrist. So, here's the vague background, I guess...

My first surgery was in 2015, and was absolute garbage. Some kind of minor heat-based tendon repair, to the best of my knowledge - the surgeon never explained it to me, and refused to see me again after, despite my pain returning while I was still in recovery from that surgery.

Second surgery was a reconstruction in 2017. Other treatments weren't working anymore, and it had to be done. Went reasonably well. I got 2 years out of it before it failed out of the blue.

Third surgery was last summer - proximal row carpectomy. Recovery for that went alright. I had a stretch of maybe 2 months where I was doing fantastic. Then the pain started up again.

We've been trying treatments, and running tests, hoping it was just the wrist being agitated from all the trauma and recovery. Turns out, it's not.

My capitate is fractured, and full of inflammation. Somehow, my cartilage is eroding far faster than it should. So at this point, it's time for another surgery to try to salvage whatever we can of my wrist. And it sounds like I have 2 options.

I can decide I'm done - because after 6 years, I am so unbelievably tired of surgeries and pain - and finally do the fusion. Something I was prepared for the last time, before I was told the PRC was on the table and would potentially buy me 10-15 years. So it's not like that concept is a massive shock to me at this point.

Or, I can choose the resurfacing option. It sounds like, best case scenario, that would get me 5-7 years before we'd have to fuse it anyway, as the parts are going to deteriorate. It comes down to is the potential of 5 or so more years of motion worth knowing there's at least one more surgery on my horizon, and is the extra trauma of that added surgery going to be worth the time I get out of it.

Most of what I can get online is just summaries of studies, and none quite match this situation, anyway. So if anyone has anything they can share about life after either of these procedures, the recovery, etc., it would be greatly appreciated. I'm genuinely leaning towards the fusion because I just don't want to hurt anymore, but I want to be sure I've really considered both options before I settle on one officially.
 

Jaycey

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@gryphon Welcome to BoneSmart! Sounds like this wrist has taken you down a very long and winding road. Hard decision I am certain.

If you read post number 6 on this thread our member @EmEm gave a great description of wrist fusion and life after. I've tagged her as well but she hasn't been on the board for a few weeks.

And if you go to the Other Joints forum and ok for the light green "Wrist" prefix in front of any thread title - then click on the prefix. You will get a list of every wrist thread on this forum. Lots of questions about fusion.

All the best in making this decision.
 

Jamie

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Hi, @gryphon .... so glad you joined us here on BoneSmart. Our wrist population on the forum is just beginning to grow, so it may be that there isn't anyone active right now who has been faced with the decision you're working through. But I hope you continue to post as you go forward with your journey. Your experience will help others who come along later. No matter what you decide is best for you, your BoneSmart family will be here to support you and help you get through it all.
 

EmEm

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Hi @gryphon I am sorry to hear you are having such serious wrist problems when you are still so young. Many people will not appreciate just how exhausting the pain is when the tiniest of hand/finger movement can set it off.

I can't remember exactly when the pain in my left wrist started although I came across a photo of my now adult son as a baby and I have my wrist strapped then, so possibly 30+ years. Over the years my GP gave me cortisone injections until 2015 when an X-ray showed severe degeneration and I saw a hand surgeon. He did injections in the operating theatre but any benefit rapidly disappeared and fusion was the only option.

I have been fortunate that I have always been cared for by a specialist hand surgeon not a general ortho surgeon and recently I had additional surgery on the fused wrist to reduce the length of the ulnar bone. This had been mentioned at the time of the fusion so it came as no surprise. I also had my trapezium removed and a tendon replacement because my thumb had become very painful. I have recovered well from both these procedures which were done at the same time.

My comments on the thread that @Jaycey provided the link to still stand today. I do not regret the fusion at all. The minor difficulties are just that - minor. However, this is not my dominant hand and I have a strong right hand. So 4 years on from the fusion I can work, drive, do a lot of craft, garden and much more. I take no painkillers and no longer have to sleep with my hand on a pillow.

I will continue to monitor your thread so if you have any questions please tag me and I will respond.
 
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gryphon

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@EmEm Thank you for the reply!

It really can be hard to make people understand just how much pain these things cause. My husband gets it, as he's seen me break down to tears more than once from how intense it is over the past few years. Any tiny movement sets it off, and it's just agony.

My biggest concern is the fact that it is my dominant hand. Which, at this point, I haven't had 'full' use of in so long, I'm not sure how much it matters anymore? I don't think I ever regained full strength after my reconstruction, and I was about maybe 60% mobility, before the PRC last summer. And I'd just barely gotten range of motion back before the pain happened again, so at this point, I'm so use to not being able to move the wrist, I'm not sure how much it's going to effect me with that being permanent.

Can I ask if you need any adaptive things for crafts and such?
 

EmEm

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Hi @gryphon, I don't have any adaptive things for craft. I needle felt, make cards, paint, sew and garden without any special help. I do have some garden hand tools that put less stress on my right hand because I am fearful that will go the same way as my left.

Talking to you has made me think about what I may have struggled with when my wrist was first fused. The only thing I can think of is driving and that was short lived. We have a VW car and I found it hard to move the gear changer and had to hold it differently. As the car is auto that is only at the beginning and end of a journey so not difficult. I now drive a Toyota and have no problem at all.

I was told by the surgeon that fusion is last resort surgery with no way back but for me, there was no alternative. However, I was 60 at that time. I wasn't offered PRC and had to Google it to find out what it was. Is there any reason not to have the PRC first? Would that prevent fusion in the future?
 
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gryphon

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@EmEm

Driving has me a little concerned just due to where my gear shift is in my current vehicle. I'm not sure how I'll have to angle my arm to grip it, as my car is a little small and tight at the best of times already. Getting to a gear shift down at my side does not sound fun, but I imagine is still manageable enough. Especially, as you said, since it's only at the beginning and end of the drive.

We did the PRC last summer, actually. It would have been June, I think? I was still in therapy when my pain came back as bad as ever, maybe around November? My specialist wanted to try some steroids first to see if it was just some inflammation. I'd regained an extra 10 degrees of overall motion than what they expect, so we thought maybe the joint was just agitated by that extra motion.

The hope when we did the PRC was that it was going to put off the fusion for another 10-15 years. It's a trade off of giving up some grip strength to retain motion, while the fusion would lose motion while retaining grip strength. I'm the mom of an autistic kiddo who still needed more regular assistance than he does now, I needed my motion far more than my strength. And the general feeling was that having a fusion around my 40's was a lot more reasonable than one at 28. But when the steroids didn't help the pain, we ran an MRI just a couple weeks ago, which is how we discovered my rapidly deteriorated cartilage and the fractures in my capitate.

The only potential alternative left for me is the capitate resurfacing (which, judging by other posts, I supposed I can just tag @Josephine to ask - anything you can say about that procedure?), but that's still only likely to earn me 5-7 years before all that's left is the fusion anyway. So it's really a question of is that time with some retained motion going to be worth it? This wrist has been through 3 surgeries in about 4 1/2 years, 2 of which used the same incision, and I believe is the same one that would be used again for both of my present options. So it's been through so much trauma already, I'm just not sure the potential of 5 extra years is worth it anymore.
 

EmEm

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@gryphon I don't think Josephine is active on the forum any more as she is recovering from her own surgery.

I just Googled wrist fusion and found people with rheumatoid arthritis discussing it. The website is healthunlocked.com. The only person I have talked to with any experience was a mum of someone with RA who had both wrists fused. The daughter had gone on to have two children and managed to look after them OK.

Has anyone suggested temporarily strapping your wrist so that you can't flex it to then try some of the things you are concerned about?
 
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gryphon

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@EmEm I'll have to check that site out, thanks

I've been in splints and braces long enough at this point I know roughly how most of it will go, as I'm pretty used to not having movement in the wrist by now. My bigger issue is for things like driving where I haven't been able to do it anyways because of the pain from gripping. So strapping it to test angles and such won't help because I can't stand to physically grip the wheel or gear shift anyway.
 

Knitter4444

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I had both wrists fused.. one in 2016 and the other in 2017 I think.
Happy to share my experience.
Merry
 

Jamie

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Unfortunately Josephine has retired from the forum and won't see your tag.
@Knitter4444 ... if you could share some of your experiences, that would be very helpful. We're still growing our "other joints" forum and appreciate all the input we can get.
 

Knitter4444

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The best part of my fusions is that I have no more pain in my wrists. I drive with no problem. But I am using tendons and ligaments that are not usually used for certain tasks. So I have pain in my elbow area. I can no longer write legibly and picking things up from the floor is difficult sometimes. My arms get tired easily since my wrists don’t flex. But I would do it over again if I had to. Going to get thumb fused in 3 weeks.2 surgeries (2 different MDs) and both thumb surgeries failed.
good luck with your wrist I deal with the limitations. I am 78.
 

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