Hi everyone, I don’t post very often ( please forgive me if I ramble) but would like some advice from anyone who has had an elbow replacement. How long was recovery, was there a lot of pain, how much more movement has been recovered etc. My right elbow is severely affected and my left one is now joining the party. I’m on the operating list for surgery and have been for 6 months. I was recently told by my hand therapist that you’re quite restricted after the op and still don’t get full movement back, so it would be good to hear from anyone else has experienced this procedure. My elbow is so stiff and painful and I sometimes find it hard to get a cup to my lips. I’ve had RA for 23 years and it has mainly badly affected my hands and wrists which are both now fused and now my elbows kicking off. I recently had a Darrochs procedure on my right wrist to remove a bone and am mostly recovered from it. My surgeon also wants to operate on my left thumb but I’m finding it all a bit overwhelming at the moment as I’ve just recovered from Covid. What an evil disease this is and so many people don’t understand it. I’m very lucky to have a husband who now does all the cooking and heavy cleaning and looks after me well. I’ve always been a very independent and capable person and this disease robs us of that. Don’t get me wrong I do get out and about and try to do as much as I can to not let RA get me too down ( difficult at times) and I’m so grateful for this site where we can find help and hear from people who understand what we’re all going through. Thankyou all for any advice you can give and hope you’re all coping well through these difficult times.
Elbow replacement : Hi everyone, I don’t post very... - NRAS
Elbow replacement
No need to apologise. I have no experience of these issues (apart from hubby doing the lifting etc) but wanted to send you my very best wishes and a gentle hug.
Thankyou for your reply and your hugs, just a little kindness like this is very comforting. A hug and a kind word helps you keep going xx
Xx
Hello, I have had RA for 32 years. Almost all my joints are affected to some degree. I had an elbow replacement in 2014 on my left arm. Recovery was not too bad, there wasn’t a great deal of pain either so it was one of the “easiest” replacement surgeries I’ve had. I am now on the waiting list for the right elbow but not sure when it’s likely to be. My advice is that if you are in a great deal of pain from your elbow then do it. I found once the initial after op pain (which wasn’t bad) subsided it was a wonderful relief. I also bought some metal straws which helped with my ability before the op and post op. Being completely honest I would have to say you possibly won’t get full movement back but almost but it’s also pain free. I like you, have had several ops to my hands. I think you have to be realistic as with the ops nothing will be like “normal” but nearer then pre op. I really hope this helps and wish you all the best.
Thank you for your full and honest reply. I will get some metal straws, thanks for the tip. I guess I already knew I wouldn’t get full range of movement back but as you say taking the pain away is the most important thing. I don’t consider myself a wimp but some days the pain can make me very depressed. I hope your second elbow op goes as well and thank you so much for lifting my spirits.
Hi Smw-69
I'm sorry to hear you are struggling so much with your elbow. It's very hard making these kinds of decisions isn't it? We get caught between the unknown of going ahead (which would hopefully be better), or putting up with the devil we know! I've been offered elbow replacements, but have not yet gone ahead and am (thankfully) mostly not having as much difficulty as you.
I have also been led to believe that this op was good for pain relief, but not so good for restoring movement. I don't know about you, but I have definitely been re-assured by the two members who have responded who have had it done. We know we can't expect something to be fully normal again, but if the joint had very restricted movement anyway, then I think I would try and take any level of movement you may regain as a bonus. Not ideal I know, but it never is. 🙄
A few years ago I used to chat with another "regular" at the rheumatology clinic. One time he had his arm in a sling. He'd very recently had an elbow replacement. I cautiously asked him about it, and he very proudly immediately removed the sling and showed me how easily it now moved and even better, without pain! He was thrilled. I always think of him whenever I think of elbow replacements- he definitely inspired confidence.
I hope when you have your op that you have a very similar experience. I can certainly appreciate how it might all feel a bit overwhelming at present having just had covid, a recent wrist op and suggestions of future thumb surgery. That's a lot to be going on with!! With a bit of luck, by the time it comes to the elbow op, you will be fully recovered from the horrible covid, and the wrist op will be a distant memory too!! 🤞🤞
Very best wishes xx😊
Hi Kags1068,Yes I’ve been reassured too by the two members who have gone through the elbow ops although I know I’ll still be going through the pros and cons for some time yet! Having had all your most welcome responses though I feel more reassured and hopefully can come to a decision in time for my next consultation.
Thank you so much for taking the time to reply and send my good wishes to you too.
This really frightens me. I have Psa and my elbows are badly inflamed and pain and I'm terrified ill have to have them replaced.My question is isn't your RA under control with meds. How is it that you need all these replacements of its controlled and if you are on meds what is the point if you still need your joints replaced? I ask this as I have just started taking 10mgs metojet Mtx and wonder if these drugs really work. It's taken me 4 years of suffering to finally agree to try mtx.
Hope you don't mind me asking questions but having RA for so long, you will know a lot more than me.
I don’t mind at all. My RA has been very aggressive since it started 32 years ago. Back then they treated it differently and didn’t prescribe methotrexate immediately. I was started on leflunamide with anti inflammatory then sulphasalazine . Since then I was tried on several different drugs, even gold injections to which I had a spectacular reaction (it’s not used now). After around 10 years was prescribed methotrexate, I’m now on 25 mgs along with other drugs. I was given 3 different anti TNF’s which I reacted badly to. Sorry, I’m telling you this as things have changed so drastically medication wise that you tend not to see the joint problems I’ve had. I certainly would be so much worse without my drugs so yes, they do work. Try not to overthink these things, we are all very different and I think I am perhaps very much not the norm. I certainly don’t want to frighten anyone. I can honestly say I have been well looked after it’s just my system doesn’t react to many drugs so I’m only hoping I never have to stop the cocktail I’m on now. Please take care and try not to worry too much. What I would say is surgery is usually a last resort. Take care x
Nothing to share on this but with long term RD (Stills Disease) causing pain in all joints I just want to wish you well whatever you decide. I will add that walking badly due to hip and knee pain over 40 years has caused another none RD injury on the good leg putting more pressure on the bad leg. So my humble and lay opinion is go for it - good luck and d9 let us know how you get on.
Thank you for taking the time to reply even if you’ve no experience of this. You’ve a lot to contend with too and my sympathies go to you. It’s a battle isn’t it, with all joints giving you gyp, so we have to stay strong and carry on as best we can. I am waiting for a good talk with my elbow consultant but with current situation and waiting lists it may take a while. Sending you my best wishes and I’ll let you know how I get on.
Hi Smw-69
I've had 20 operations to date - being diagnosed over 40 years ago, treatment regimens were very different and we didn't have the wide range of drugs available today so I sustained lots of irreversible damage early on. I've had both elbows replaced a good number of years ago. Before surgery they were super painful and I was really restricted. Both ops have been really successful and I have pretty much a normal range of motion in both. You have to work hard at rehab post surgery and I recall one of the things I did every day was to sit and polish my dining room table as this movement helped me to gradually get the full bending back. Initially I couldn't get my hand nearer when bending elbow at right angles than about 12 inches from my mouth but gradually it got better and better but you do really have to put the work in on a daily basis. Probably took about 3-4 months as far as I can remember. Sounds like you've got other problems going on but best advice I can give anyone facing joint surgery is don't leave it until the joint is so destroyed that the surgeon has a less good opportunity of getting the best outcomes from surgery for you. Good luck!
Ailsa - NRAS National Patient Champion
Hi Ailsa
I think I may be in a similar(ish) position to you. I was diagnosed 39 years ago (at 14), and as you say, things were very different, and drug treatments were very limited. Like you, I sustained lots of damage early on. When you face lots of operations (I'm just recovering from op number 31 - grrr), it's always very difficult to decide if and when to go ahead. My natural inclination tends towards waiting as long as I can until the pain/difficulties get too much. I think you have raised a very important point on this, and as I have found out, it's not always the best approach! It has been drummed into me over time that there is an optimum time for going ahead with an op, and that by leaving it too long and trying to put up with something that will most likely have to be done eventually, you can make it harder for the surgeon, and the outcome less certain. I don't know about you, but I just find it tricky to judge when I've left something too long!!🙄 I guess that's why we should listen and take the advice of the surgeon ... although it's not always that easy to face. 😊
Hi Ailsa, good to hear that your elbow ops many years ago have been successful and I have taken note of your advice that leaving it til the joint is so bad it makes it more difficult for the surgeon! I have a really good surgeon and have every faith in him but these decisions are tough. Most of us with RA have to face them at some time and it really helps to have this site where we can find others who have gone through similar and get good advice and help. Thankyou so much.
Hi KagsI know what you mean. But I've gone back to both my foot/ankle surgeon and my neck surgeon to double check when I've had further bouts of difficult pain, just to get re x-rayed or scanned and get an opinion. I really wasn't looking for further surgery but equally couldn't face living with the level of pain at the time that was going on and on both occasions was presented with alternative solutions that might help.
Hi Ailsa
Thanks for your reply. Yes, it's definitely worth going back to a surgeon you trust to get an updated opinion and new x-rays etc. We never know what might have changed.
Surgery always seems to find us, eventhough we're never really looking to have any more!😉 It's true that there comes a point with the pain where you have to do something. I'm really encouraged to hear that your docs were able to offer alternative solutions. I hope they will, or have worked for you. 😊
Sending huge hugs xxx
I had my elbow replaced 4 yrs ago . The best thing I have had done. I have had RA for over 50 yes’s . After surgery it was painful but 6/8 weeks down the line I had a good range of movement. Now painfree in that elbow . Well worth the pain. I put of surgery for 4 yrs . Will not do that with my other elbow. Take care and remember everyone is different. Do the physio and you will be ok. X
Hi GlamNana, so good to hear you’ve had a good outcome from your elbow op. I’ve been heartened by your experience and the others and although I know we’re all different it has given me more confidence for when I actually get to see the consultant to discuss it. I’ve been overwhelmed by the kind and informed responses from everyone. Sending my very best wishes and grateful thanks xx
I had a knee replacement in 2009 and my left elbow replaced in 2012 . I've also had a plate and nine screws in my left ankle . My RA started in 1998 so I'm well versed in operations caused by RD . All operations have been successful and have lasted well . My knee was in a pretty poor state by the time it was operated on . This was because it wasn't particularly painful ( pain was the criteria for operations) but as I was on crutches my rheumatologist accelerated the operation as he thought my other joints would suffer .
My elbow was in a pretty poor state as well with a large subchondral cyst . I had an excellent surgeon for this operation and I now have excellent movement . I did the exercises and wore a night splint for quite a long time . I was told that I wouldn't be able to completely straighten my arm but it is much straighter than either I , or my surgeon , had expected .
My only problem was that I contracted an infection during the operation ( something we are always warned about ). So I had to have it all opened up , washed out , and an antibiotics infusion. I am still on lifetime antibiotics.
However , all ended well and I now have a good , well functioning elbow .
My left hip is now very painful and I guess I'll be down for a hip operation. I'm hoping I won't have to wait too long .
Good luck with your decision 👍
Hi Smw-69. I had an elbow replacement about 10 years ago and it was the best thing I did. Very restricted movement beforehand, but after the operation and lots of physio my movement is almost back to normal.As Alisa said, you need to work at your recovery and diligently do the exercises to have the best outcome.
Wishing you all the best for your surgery and sending gentle hugs.
Thank you Lematt for giving me your experience with elbow replacement. I feel much heartened by it and am not feeling as frightened and apprehensive about it. I also had a call from my wrist surgeon this morning who now recommended a right wrist replacement! It’s all coming in at me at once! I’m sure I’ll get through it all but tough times ahead. Sending my best wishes.
Im so pleased that my experience has helped and very best of luck for your upcoming surgeries. Both of my wrists fused on their own so no movement at all. Also seeing the Consultant next week about my right shoulder and elbow. It never ends, does it.Although, it is heartening to know we are not on our own. Take care.
So true Lematt, never ending, but as you say it’s good not to feel on your own. As well as my elbow op My right wrist has fused on its own but the hand surgeon wants to give me flexibility in at least one of my hands. The thumb will be operated on too at same time as it’s very painful. Trying to negotiate the timing of these ops to give me some down time in between with two surgeons…..xx
I have found these posts really helpful. Thank you. I had had both hips resurfaced, then a revised hip replcement and had a shoulder resurface too. I have been putting off my elbow getting replaced for a few years now. It's a case of my right wrist has fused itself. Also been told 8 of my toes would benefit from pins and I have a recurring bakers cyst so rather than make a decision on which of these joints to pursue I have not. 🙈 I suppose I haven't had the oomph however I am coming round to tackling my elbow and this post has arrived at the right time. Just hope I am not told by docs that I should have done this earlier but will cross that bridge
Hello there,Thank you so much for posting this and to the very helpful replies. I wish you lots of luck and hope you are offered a surgery date soon.
I agree it is a difficult decision to make sometimes and maybe more straightforward with the lower limbs. I have had severe RA for 50 years and so many operations I have lost count!
I am also awaiting elbow replacement and have got as far as all the preop tests. I had a call from the OT yesterday who said I would be in a sling for six weeks and a splint at night. My other arm and hand are not at all useful so some functions are going to be fun - I think you can get the picture as I do value my independence as much as possible especially in personal care.
I have had operations on my shoulders and elbows dating back to 1985 but the nerve damage in my right elbow is acute and gives electric shocks on movement, so the surgeon has no option but to do a total replacement with some neurosurgery. It's complicated, especially as a meeting with the anaesthetic last week raised some serious concerns with my neck regarding giving a GA. Neck has been fused three times.
So I do understand preop concerns and the posts about not leaving things too long and positive outcomes are very helpful, thank you.
Do let us know how you get on please. Feel free to PM me.
Best wishes from Liz
Hi tinlizzie
I love your name, by the way! I'm sorry you've had this disease for so long and have had to endure countless operations.
It sounds like you've had a number of tough decisions to make. I don't know if this helps, but I developed nerve problems in my elbow, and eventually the pain - electric shocks etc as you describe, became unbearable. I had the operation to release the nerve and re-position it. It wasn't done alongside an elbow replacement so it was simpler for me, but it did work really well.
With regards to your neck, is it the same bit you've hadto have re-done more than once, or is it fused in 3 different places? I had a C1/C2 fusion a few years ago. I've gone some subluxation at C3/C4 now, but thankfully, nothing too drastic.
I've had this issue a number of times with anaesthetists - some refused completely to do a GA. Although the fusion was supposed to mean a GA would be safe, most anaesthetists are still reluctant. I was very, very wary of having ops done by nerve block/spinal's, but have been talked into it for the last two. To my surprise, it was actually better than having a GA, and I felt better quicker afterwards. I was really scared of being awake, so I made it very clear I wanted to be completely sedated and sleep through it all, and I was. The sedation wore off quickly with no grogginess too. I had my most recent op 8 weeks ago, and hadto have a GA as well as a spinal as it was a long op and spinal's only last a certain number of hours. Ironically, I was actually disappointed I had to have a GA! It was ok though, and my neck was fine. (I realise yours is upper, not lower limb, but I imagine the principle is the same)!
Apologies if you are already well-versed in spinal/local/nerve block anaesthetics etc, and I hope you don't mind me responding.
Good luck with the op! X😊🤞
Hello, I had my left elbow replaced just over 3 months ago ( November 2021), before surgery my elbow (actually both of them) was fixed in a bent position, my rheumy said this was because I used crutches for so long before having both my knees replaced! I also had tremendous pain all the time, I was told prior to having it done that my arm may still not be straight but I’d be pain free. I thought I’d have to jump through hoops to get anything done about it as I had this problem with my knees, I kept being told I was too young to have them replaced but my argument was I’m too young not being able to walk! Thankfully I didn’t wait long to have my op, I had a phone call asking if I wanted it at the Spire but on the NHS, I had one night in hospital and was then given two weeks worth of pain killers although surgery pain wore off fairly quickly. I felt recovery was slow to start with (think I was comparing to my knees) but after 6 weeks of physio I did feel I could move it. I can now wash my hair and get a cup to my mouth, both of which I couldn’t do before and I’m currently at Center Parcs ridding my bike!! My arm is still slightly bent but I’m totally pain free and the plan is to have my right one done this year! I would definitely recommend having it done. I should mention mine is an un-linked replacement, I’m assuming there’s different as my surgeon kept telling me it was un-linked? Hope things go well for you Xx
Thanks for your reply Scooby. Encouraged by your elbow replacement recovery and I feel much more confident about it now, especially hearing you’re riding your bike and can wash your own hair! I’m so glad I put my enquiry out there as I’ve had some helpful, informative and supportive replies like yours. So very grateful. Sending you my best wishes for a continued recovery. xx
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