This is an account of my experience of being a rheumatoid and having my shoulder replaced. It’s not really for comment but just meant as a guide for anyone else with RA looking at having the same procedure. I will write in instalments and add a couple of photos of the scar as we go along.
This is just my experience. We’re all different and even the aggressiveness of RA varies between us so please bear that in mind if you continue to read.
For those who don’t know me a brief summary is I’m nicknamed ‘Legs’, born 1958, married 1978, contracted RA after the birth of my 2nd child when I was aged 27. I had a toddler of 2 years, a newborn and all my joints stopped working, almost overnight in a massive flare and Mr Legs and I had to learn to cope. We have and we continue to do so.
I’ve had 3 new knees and the knuckles on my left hand replaced plus other hand procedures.
For years my shoulders have been very limited in their range of movement, but as they didn’t hurt, particularly, I learnt to live my life around them. In 2018 my shoulders became very problematical causing me so much pain that it was difficult coping from day to day and that isn’t speaking of the nights!
I decided to seek help with the pain and, as I expected, the wheels were put in motion to have both shoulders replaced, starting with x-rays, a CT scan, seeing a surgeon and being put on the waiting list. The surgeon told me that I have no shoulders; the sockets had worn away completely and the ball part was disappearing too! (I have wondered for years why bra straps always slipped down!) The window for him to work with was very small as the more they eroded the less bone he would have to attach the replacements. If I left them as they were the chances were the bones would fuse (grow together) leaving with me with no movement at all!
The procedure was due to take place in April and by this time my shoulders had settled down again, the pain much less and therefore bearable. I still had difficult nights but it wasn’t as bad as it had been during the flare. This was now a gamble because apart from the aching, clicking and grinding with movement, should I have the surgery? I decided to go for it as I was always terrified of the ‘flare pain’ returning so it was a case of 'now or never'!
I am right-handed and also a watercolour artist and glean much pleasure from this hobby. They wanted to operate on my right shoulder first, wait six months and then do the left. I would have a total reverse procedure which, if you need to know more, I can detail later. My surgeon said that he might only be able to do a half replacement but wouldn’t know till he was ‘in there’ and could physically see what he was faced with. I was told it would be a very complex operation and they would have to use computer software to make sure the implant was put in the correct position. This was also further complicated by the fact I would have to be awake due to the arthritis in my neck and jaw.
I had the pre ops and a date for the end of April but my surgery was cancelled because of Covid19 and lockdown. Eventually the operation took place mid October.
(I will continue this account in a short while.)
If you have any questions please don’t be afraid to ask.
Love, LindaLegs x
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LindaLegs
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Hi Linda, Hope you're doing well after your surgery. These write ups of your procedures are really useful for those of us waiting to have similar surgery done. Thank you x
Thank you LindaLegs for sharing this with us, by the way my mum developed RD at 28 following my birth so it was interesting to read this in your post. Take care xx
What a time to need surgery. I am very interested to hear of your experiences as shoulder sockets are a problem with me and I look forward to hearing the rest of your story. I hope you are recovering well and will soon be able to pick up a paintbrush again soon.
Due to COVID-19 I had to follow a ‘green route’ which meant strict isolation two weeks either side of surgery and being tested for the virus 48 hours before being admitted into hospital. Once in hospital I was only ever with people who had been tested and were also clear of the virus.
I had to stop injecting Benepali 2 weeks before surgery.
Before going in I checked on the hospital website where there was a list of things you would need for your stay when you aren’t allowed visitors (who would normally bring in stuff you’d forgotten). In these Covid times the hospital will supply you with essentials so don’t over worry about this.
As well as remembering to remove jewellery, nail varnish, etc a good tip is to cut your nails really short because you might struggle afterwards.
On surgery day I had to report straight to Theatre Admissions Lounge with a small suitcase on wheels and masked. I rang a bell, spoke through an intercom and was admitted where I was put through preliminary tests, more tests and my forms were filled in by a nurse. The consultant anaesthetist came and we discussed how I would be anaesthetised. Normally for a total reverse shoulder replacement the surgeon likes you to be asleep and also for you to have a nerve block which helps with the pain afterwards. My neck is very stiff with little movement and I have restricted jaw movement too so it was in my best interests to be awake during the operation.
A surgeon came through and marked my right arm with an arrow and then I went to have my last pre op wee!
In the anesthetics room, a cannula was put in place, I was given medicine to relax me and the nerve block was put in. They used ultra sound to detect the right nerve and the needle was put between my shoulder and neck. I don’t remember this hurting particularly and I watched on screen as the block was injected slowly around the correct nerve. It starts to work immediately and is fully effective within 10 minutes. Your arm feels very warm, numb and heavy but you are unable to move it. It is then tested for feeling with a cold water spray before you are taken into theatre. I had ECG pads on my chest, an automatic blood pressure cuff and finally an oxygen clip on my finger as well as the cannula for administering the drugs.
In theatre I was transferred onto another ‘bed’ because for shoulder surgery you need to be sitting in an upright position with ‘stops’ either side of your head to prevent it moving from side to side. A material screen is put between your head and shoulder so you can see nothing of the procedure at all. My legs and body were covered in a light, inflated blanket which had warm air going through constantly to keep you snug (my favourite bit) as theatres are cold places in my experience. The consultant anesthetist sat next to me monitoring me the whole time.
I was heavily sedated and found myself drifting in and out of sleep, listening to conversation between the team, sometimes talking to the surgeon and answering questions from the anesthetist.
Orthopedic surgery is noisy with drilling and tapping but as your arm is numb you are detached and it’s like someone doing DIY in the corner! In fact it is nothing to worry about at all.
A standard shoulder replacement (TSR) normally takes an hour, a total reverse shoulder replacement (TRSR) takes 1-2 hours. My replacement took 2 hours 30 minutes.
When the screen was lowered and I could see the team clearing up, my surgeon told me it had been successful and he had been able to give me a full replacement. I admit I cried euphoric tears! (I do like attention!)☺️
I get the impression you'd wish to see the actual goings on of the operation rather than being screened from it Linda, rather like myself! I do hope your recovery is a smooth & swift one. Do everything you've been told to do re exercise & rest & hopefully you'll have many happy years of painless movement with that shoulder. I also hope the upcoming op is equally successful.
Thanks Nomoreheels, I didn't mind watching the nerve block on screen but I couldn't have stomached the surgery! I'm sure you'd connect the noises with what you're seeing, no thank you! Do you like horror movies too by any chance? xx
Thanks for that post. Very interesting and I would definitely like to hear how it's all gone. Like you, I'm a long-term JIA patient with it affecting all joints, most joints pretty damaged and having undergone many operations (inc. 3 new hips & 2 knees). I was diagnosed at the end of 1982 not long after turning 14. The JIA/RA has also severely affected my eyes causing complete loss of sight in one eye.
Like you, I was offered shoulder replacements several years ago, but have been trying to hold off until I could stand it no longer. Very restricted movement, but I was "managing" with the pain. Had rotator cuff repair a few years ago, but has now torn in other shoulder. Think I'm going to have to start thinking about replacements soon as can hardly lift arms as high as forehead nowadays! Also, can't keep bra straps on either and my shoulders look very narrow and "slope".
I also fully understand your point about their being an "optimum time" for replacements between going to soon or too late. I had my hips initially replaced at 19 and when surgeon did them, it became apparent they had worn through to my pelvis and had started to erode that. I had to have bone grafts for pelvis during each op. Likewise, by the time I had my knees done I was told afterwards by surgeon they were on the verge of collapse. It's difficult isn't it getting the timing right. Especially if you know you will always have other ops on the horizon and so you are having to prioritise them!
I have also been offered new knuckles and elbows on both sides but again, am biding my time!😄
I do hope it went well and has been successful. I take the point about anaesthesia and neck problems too. I've had this issue for a number of years. Had a C1/C2 neck fusion (horrible) in 2009 as neck was unstable/subluxation. Prior to this, it was very tricky getting a general anaesthetic. This op was supposed to convince anaesthetists that it was safe to do a GA now, but not all agree! Jaw problems too. 🙄
Hope you don't mind me replying -I thought it sounded as though our diseases have followed a similar(ish) busy path!😉😊
Hello Kags, of course I don't mind you replying as we're fellow soldiers in the RA war! I think we know when the time for surgery is right for us, I feel it's when a particular joint becomes the focus of everyday and night and we have to live our life around it. You'll know what I mean. Hope you're having a comfortable day. My next instalment will come when I've been through all these lovely people's replies. Love, Legs xx
Mainly, I tend to use my phone. Once the keyboard appears when I'm typing, there is a row above the keyboard where the predicted words, etc appear. On the far left of this row, is a symbol. When I press, it takes me into an alternative row showing emojis, gifs, etc. I press on the emoji symbol and then it takes me into the emoji selection. I hope this may make some sense as I'm not very good at explaining these things! Good luck!😊🤞
Haha! Excellent- I thought I'd best make it clear I was using my phone in case you were on a computer. I have no idea if you can access emojis on a desktop!!🤔
What a journey it’s been for you Linda, thank you for sharing with us, I think it’s so helpful. We all are going through this in similar or same ways & having this forum to share our experiences, drugs, day to day issues is so helpful. I have been told RA is now affecting my jaw which affect my ears!! Your post is invaluable information, please update us to your recovery, just take care of yourself, it’s sounds like you do, all the best for now 💐
Crikey. Brave lady. That all sounds horrendous. I cannot imagine coping with all that...and children !
Wow Linda, I am finding this all pretty inspirational, I do not think I would cope anywhere near as well as you at the prospect of being awake during surgery. Looking forward to your next update. X
I didn't get a choice Monkeysmum, but don't be worried about being awake as you're heavily sedated and comfortable. Love, Legs x
It is interesting to read about your experience with this Linda. I had a total reverse shoulder replacement a year ago this month and it has been wonderful. It was not nearly so bad as I was expecting and the operation took about an hour. I was asleep during it and told it would be done with me sitting up. Before I had it done, I was only able to lift my arm up by about 3 inches and the pain was awful and there all the time. I recently saw the surgeon who performed the operation and he said he would like to do the other shoulder as well because it is very weak, but because I am waiting for spinal surgery, plus I need both knees replacing and because of the Covid situation, it will have to wait for quite a while. I feel that, with me, operations are never ending, but reading about what you have gone through, I am sure that you must feel the same way. xxx
Really happy to hear your op has gone so well. Do you mind me asking whether you have regained more movement than you had beforehand? I hope you have much less pain now too!🤞🤞
You are very brave indeed🌺I had a shoulder replacement last year. I am pleased to say that it was a success. I had physio for three months after and can now lift my arm at 75 degrees something I could not do for years. No pain either. The scar is about two inches a shiny silver slug which I have been told will decrease with bio oil so no worries there. Good luck to you.
Excellent! I'm really pleased to hear you have regained movement as well as got rid of some pain. The joy of being able to reach out or raise your arm a bit, eh?! 😊😊
Oh wow - now you're just showing off - haha!! 😄 The daily battles I have with bloomin' cardigans and getting into tops and jumpers with sleeves that end up permanently twisted!! Grrr 🙄😄 I'm very envious now! x
That's very encouraging news Green230461, well done you! Love, Legs x
Hi Kags, yes to both of your questions. I can lift my arm up right above my head. I was told that I would only be able to lift it as far as in line with my shoulder. The physio was surprised at how quickly I could lift it that high and I only needed three sessions. The pain from it has totally gone whereas before it was very bad and constant both day and night.
I just wish I didn't have the extreme pain in my back and legs that I have now.
Oh my goodness! Regarding your shoulder, that's brilliant. Didn't realise you could ever get that much movement with a shoulder replacement. That's so encouraging.
I'm sorry you are suffering so much with your back. It's horrible isn't it as it seems to interfere with so many other bits too. I'm probably asking an impossible question, but can anything be done for you with regards to your back? xx
Hi again Kags, I had an MRI of my lower back done just before the lockdown in March and it was found that I have spinal stenosis, trapped nerves, three slipped disks, misalignment of the spine, degenerative disk disease and of course I already have RA and OA there. The pain is hell at times and I can only walk a few steps and only stand for about a minute. I saw a spinal specialist in August and he said he would like to put some injections into some areas near to my spine for him to diagnose some things. He said that they might help for up to three months, might help for just a very short time (even just a matter of hours) or they might not help at all. I had them done on a Friday in September and for the next two days there was no difference at all, then the following day, I got out of bed and the extreme pain that went down into my legs had completely gone. I still had some pain from other things in my back but the worst had gone. I was like being in heaven and I was able to walk up and down the garden without pain, something I hadn't done for years. I was so elated about it, but it was not to last and nine days later the pain started to gradually come back again. I am having a video consultation with the spinal specialist on Monday next week so will have to see what he suggests. He mentioned something called a spinal decompression operation. However, since all that happened I have got other problems that might mean I have some heart problems which is worrying me a lot because if I do, then I don't suppose I will be able to have an operation. Next week on both Wednesday and on Friday, I am going for tests to check up on that problem. Sorry to go on for so long.
Please don't apologise - you certainly haven't 'gone on' too much! You obviously have a long and complicated history and that can't be explained away in a few words. I don't mind at all.
You certainly do have a lot going on with regard to your back. I do feel for you, the pain must be horrendous. It's really limiting what you can do isn't it? It's such a shame those injections didn't last longer. You must have been so disappointed when they wore off so soon. It's almost cruel isn't it? Like you are given a taste of how it could be different, then it's taken away. I really hope the spinal doc can do something to help you. I wonder if you might be able to tolerate an epidural or spinal for an operation? Not sure if that's less stressful on the heart?
On that note, I'm sorry you are having yet another major worry with the possibility of heart problems. I hope your consultations next week can provide some answers, and I hope they are positive answers too.
Oh, what nice, kind thing to say - how lovely. I'd certainly like to hear how you get on next week if you want to share! Btw, how long have you had the dreaded disease? 😳xx
I honestly don't know how long I have had all my problems and it is difficult to know which pain is caused by which problem as I have so many. I forgot to say that both my knees need replacing and I need an op to repair a disastrous toe joint replacement which was done five years ago. I remember having pain in my hand badly at the age of ten which was closely followed by backache, but no one ever seemed to take much notice of the fact that I was always in pain. Up until I was seven years old I was fit and healthy. Then in the space of one year, I got measles, chickenpox and mumps and after that, I never really seemed to feel so well again and couldn't keep up with other children when we were running about. So I don't know if it was connected to being ill so much that year.
Back in 2004 I was told I had M.E. because I felt so unwell all the time and just wanted to sleep. Then in 2007 I was told it was more likely to be fibromyalgia. In 2011 I was sent to a rheumatology dept and was diagnosed with OA and connective-tissue disease as well as inflammatory arthritis. Over the years since then, it has been variously described as RA and PsA. I am a complete mess with so many of my joints virtually ruined and not much help with getting rid of the pain. In 2009 I completely lost my hearing in one ear and that is also thought to be because of RA attacking my hearing nerve. xx
Oh dear HW, it has been tough for you hasn't it? The disease has obviously been very active. Who knows if it was in some way connected to your childhood illnesses? I think the theory is that we have a genetic pre-disposition toward the condition and then some of us experience a trigger which sets it all in motion. Perhaps those illnesses could've been your trigger?
I was diagnosed with JIA soon after turning 14 toward the end of 1982. Initially I was asked a lot whether I'd had illnesses recently, or stress or a trauma. The only thing I had had was repeated bouts of tonsillitis for about 3 years or so. Who knows if that could've been my trigger? I expect it will remain a mystery!
I'm afraid that similar to you, pretty well all my joints have been affected with lots of damage and some delightful deformities! I guess we just muddle on being patched up and repaired along the way. By the way, I had both knees replaced about 15 years ago when I was 36. They both went as well as they could with the amount of damage I had, and they are still doing well now.
Hi Linda, I too had reverse shoulder replacement in both arms last year My right shoulder (dominant) is fabulous now and the healing wasn’t hard. The left took more time to heal because the rotator cup was pretty much (hanging by a thread) gone. I pray your surgeon and their team are as fabulous as mine were. The most interesting to me was my surgeon did not believe in going to physical therapy. They came to my home once to make sure I was doing them correctly. The best part is I can now wash my hair And make a ponytail (it’s the little things😊)
I do realize all situations are different but if at any time you need a cheering section, please fill free to contact me.
Whether you have rheumatoid or osteo or psoriatic or other type of arthritis here things start to change because the traits of our own disease differ so much. I have had RA for a long time and when I started with this disease in 1986 the drug regime was very different because we didn’t have the marvelous medication we have today. For a number of years now anyone newly diagnosed with arthritis will be offered medicine which will slow down and can even prevent the terrible malformation and ruination of joints.
For me all my joints are badly damaged and thankfully, as I have knee replacements, I am mobile but I have to have assistance with most aspects of daily life and personal care due to the destruction rendered by my aggressive RA. My recovery process therefore will be very different from other arthritic sufferers, so again this is just my experience.
Whilst still in theatre your arm, which you still can’t feel, is put into a temporary sling to support it. On the ward the physios come to see you on the first day and you are fitted with the sling you will take home and wear for six weeks. The arm is still numb at this point although all the way through surgery I did have feeling in my little, ring and middle fingers.
You will be advised to start the big-boy-painkillers in preparation for the nerve block wearing off and keeping on top of the inevitable after-surgery pain. Without going into my personal drug detail I will just say that all I can have to help me with pain is Naproxen, the big-boys make me poorly so it’s pretty worrying when you’re issued with this warning!
I can honestly say that the pain is not awful and my trusty Naproxen was enough for me. As the nerve block wore off I felt a constant burning sensation across my shoulder but I could cope with it and just kept telling myself it was the first signs of healing and every second of every day from now onwards would get a little better.
From what I’ve just written please don’t think I’m advising you not to accept the help of the morphine based or other strong drugs, nobody ever won a medal for enduring unnecessary pain after all! Do what’s right for you and allow yourself to be as comfortable as possible. The important thing to remember is the sooner you use your new shoulder the better and it’s easier to use if it doesn’t hurt.
Later I shall talk about the first few days after surgery.
Hi Linda, my experience was even better than yours because the numbness wore off during the evening of the day I had my surgery. I went home two days later and only had to wear the special sling for three weeks. I usually take a very long time to get over anything, so I was very surprised at all of this. In my case I took a dose of liquid morphine twice the day following my surgery, but I have to take it quite often anyway due to back and leg pain.
Hi Holly-willow, that's excellent recovery especially if you don't normally respond so well. I'll talk about how my recovery was over the next few accounts I've yet to post xx
It’s so lovely to see your name. (You’ll know me as Starburst from the old AC forums.) You’re a true warrior. Thank you for sharing and thinking of you as you recover.
During the night feeling in my arm did come back and against my better judgement I did agree to having some morphine. I was correct in thinking that it would make me feel very nauseous and by morning time I did vomit! I was then put on antiemetics to stop the nausea and offered morphine in another form. I refused it and said I would just have naproxen, on which I’ve managed since. The pain is more a feeling of soreness, tight and heavy but I class it as ‘a getting better pain’ not the bad destructive pain of before op. I know different people have different pain levels but, call me cynical, I feel in hospital, they like you to be as comfortable as possible because a comfortable patient is a quiet patient!
On day 1 the physio returned and she helped me take off my sling so that we could go through the exercises which were laid out in my small booklet given me at the pre op assessment.
This was when I was really shocked because I could not lift my arm from where it was on my lap. The pain was too much, it felt so heavy and although my brain was telling me to lift it, my shoulder refused to comply. I did ask the physio if this was normal but was told ‘not to worry and let’s look at the other exercises’. I did those tolerably well but said I would need assistance with a couple of the exercises and she said she would alter my booklet accordingly.
I was told that I must sleep in the sling for six weeks but during the day could take it on and off as I pleased. If I wasn’t wearing it and the shoulder became uncomfortable then I was to put the sling back on. When doing the exercises if my shoulder hurt more than half an hour after I’d finished then I’d overdone it and must rest my arm in the sling till the pain subsided.
I left hospital the following day with the thought that when I got home I was going to make sure that I did my exercises as much as I was able and things were bound to improve. They didn’t! I was totally perplexed as to why I couldn’t lift my arm from my lap to touch the underside of the table, let alone put it on top, which is only a few inches! I could actually ‘work up’ to it but it took several attempts and much gritting of teeth through the pain!
I was absolutely convinced that the operation had gone wrong. The gamble I had taken in trying to alleviate the pain had crashed down on me and I would never be able to use a knife, write, knit, type or do my beloved drawing and painting ever again! I compared myself with some other people I knew who had documented their shoulder replacement operations and from what I read they were a lot further on than I was at the same point.
I plummeted and Mr Legs found me in a pool of self pity! He sat down, facing me and holding my hands talked me through and back to my own reality and how we will cope. He reminded me that my right elbow is fixed in a bent position and my wrists won’t move either so all my movement comes from my bruised and battered shoulder with no assistance from other joints or muscles. On top of this with a reverse procedure another set of muscles are employed to operate the shoulder instead of the rotator cuff you normally use.
Determined I would not be beaten I asked Mr Legs to remove my sling and I did the exercises on the hour, every hour ...and overdid it! I had to resort to the sling again and after a while the pain subsided, thankfully.
After this hiccup I remind myself that joint replacements involve severing much soft tissue and that has to heal too, plus I have to strengthen the different set of muscles which have no idea what I'm on about when I ask them to lift my arm! I have to take baby steps and appreciate every micro improvement.
I will finish this instalment on the positive note that things are improving and I’m on the way up Rehabilitation Mountain. It’s a long way but I will reach my summit!
Later I shall post a photo of my head and shoulders showing the wound.
I've continued this story as a new thread in order to add a photo as I can't do it with an open post. Here's a link if you're interested in following this account
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Shoulder Replacement Operation Success,
Please can you help re surgery advice?
Total knee replacement 
shoulder replacement 
