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Total Reverse Shoulder Replacement from a Rheumatoid’s Viewpoint

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 installments 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 called ‘Legs’, female, 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, 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 at the beginning of this month.

 (I will continue this account in a short while.)

 If you have any questions please don’t be afraid to ask.

Love, Legs x
'Make a life out of what you have, not what you're missing'
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Comments

  • Sharon_KSharon_K Posts: 218 admin

    Hi @lindalegs

    thank you so much for starting this discussion, on a personal level I am extremely grateful as I'm due to have this operation next year hopefully. Sending best wishes to you for your recovery.

    Best wishes

    Sharon

  • lindalegslindalegs Posts: 5,353

    Hello @Sharon_K and thank you. Are you Rheumatoid?

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • frogmortonfrogmorton Posts: 25,823 ✭✭✭

    Oh Legs!

    You write so very well Versus Arthritis should 'use' you as one of their people on the site!

    Thank you for this account. It will really help lots of people in the future ((()))

    Take care old friend 😘

    Love

    Toni xxx
  • lindalegslindalegs Posts: 5,353

    Thank you Toni (@frogmorton) for your kind words and also for the link in dear Val's cafe.😊

    I'm just going to add the next installment.

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • lindalegslindalegs Posts: 5,353

    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 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!)☺️

     

    Later on I shall talk about after surgery.

     

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • BrynmorBrynmor Posts: 736 admin

    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.

    My goodness... you are just one amazing person 😃

    Thankyou so much for this account of your operation. x


  • lindalegslindalegs Posts: 5,353

    You're welcome and thank you @Brynmor The anesthetist did say I was too high risk to be allowed to sleep as I might stop breathing and she hoped the nerve block would be enough on it's own! 😲 It was enough and I didn't feel a thing thanks to the skill of this lady. I felt completely safe in her hands.

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • frogmortonfrogmorton Posts: 25,823 ✭✭✭

    oh LEGS! Well done this is a really good saga we need it 'saved' somewhere @Brynmor it will so help people in future.

    Lucy had the shoulder block too, but was young enough to be knocked right out. I am so please he managed a total replacement I see no reason at ALL why you shouldn't seek attention...you deserved it after that!

    If you haven't already I will link this next instalment over to the café

    Love

    Toni xxx
  • lindalegslindalegs Posts: 5,353

    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.

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • lindalegslindalegs Posts: 5,353

    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 installment 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.

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • frogmortonfrogmorton Posts: 25,823 ✭✭✭

    Well DONE Legs! and Mr Legs is a star too🌟

    Lucy would sympathise with your story so very much and her muscles hadn't been in use for much less time than yours!

    I always think reading about people who do well is all very good, but people who have to work at it are all the more inspiring and it's reassuring. You need to know you are not unusual if things don't recover super-quickly.

    Take care

    Love

    Toni xxx
  • Sharon_KSharon_K Posts: 218 admin

    Hi @lindalegs

    to answer your question, no I have psoriatic arthritis, however like you I have a very fixed neck and my jaw movement is very limited too. Your experience is so wonderful to read and thank you so much for writing in such detail. You are right we are all very different but I am also aware of the similarities. Sending you giant healing waves to help you up rehabilitation mountain, I have spare ice picks and crampons if you want them. I am sure the members here will also be massively supportive and thank you so much for sharing your journey with us all

    Best Wishes

    Sharon

  • lindalegslindalegs Posts: 5,353

    @frogmorton

    Toni, you are so encouraging and supportive of everyone on here! I think you should be classed as VA site mum! Up or down you are the person we need by our sides. Thank you, just for being you 😍

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • lindalegslindalegs Posts: 5,353
    edited 26. Oct 2020, 15:30

    @Sharon_K Thank you so much, I'm glad this is proving useful for you.

    ☺️

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • lindalegslindalegs Posts: 5,353
    edited 26. Oct 2020, 15:42

    Please see photo below.

    The bruising and swelling go all the way down my right arm to my fingers! The underside of my right breast is also black and heavy with fluid. My hand and arm swelling started reducing slowly after about 8 days. This might be peculiar to me and how my body works at the age of 62!

    If you look at the photo there is definitely a difference in the anatomy of my operated shoulder. The new one is higher and a more smooth shape. Whether it changes when the swelling has gone I don’t know. I shall put up another photo when I’ve had the dressing off at the end of this week. I’m assuming it will look much tidier when the blood under the dressing has been cleaned up!

    To talk about pain briefly, I’d like to say that I find I’m getting a lot of neck stiffness and pain, as well as both shoulders. It has spells when it’s quite intense, then it gradually eases and other times when I hardly notice it at all. If you experience similar use your own advised pain management and rest your arm. The problem I am now having is being a rheumatoid and not being allowed to inject my Benepali. I will have now been off it for a month today so all my joints are becoming sore. I know my surgeon said I could restart it 2 weeks after surgery but I’m going to last till next Monday when I’ve been for physio at the hospital If it wasn’t for the threat of contracting Covid-19 I would’ve restarted my Benepali today because, normally, I wouldn't want my body to cope with a flare as well as healing. I've decided my biggest risk is Covid!

    Another thing, which might be peculiar to me is, I’m getting nightly headaches which go with the neck stiffness and pain. I do experience a lot of headaches across my forehead anyway because of arthritis in my neck but this is on top of what’s normal for me and seems to be all over my skull. In saying that it has been better the last couple of nights, in fact today is the best day so far in the comfort of my shoulder.

    Clothing tips which made my life easier:

    ·        A kind friend lent me her poncho which is great for going outdoors as there are no sleeves.

    ·        In hospital and at home, button up pyjama tops or loose fitting shirts/blouses.

    ·        For warmth, cardigans or zip fronted tops with wider or giving sleeves to allow for swelling.

    ·        Elasticated trouser bottoms which are easy to push down/pull up for toileting.

    ·        And the best thing I’ve done since getting home is not bothering with knickers! I honestly found it hard enough with trousers so why struggle with 2 lots of clothing ......as long as you’re comfortable and don’t mind being a bit of a hussy!

    The other thing I do whilst not being allowed to lift a kettle is use a plastic jug for water and boil up in the microwave for hot drinks.

    Later I shall talk about my progress.


    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • frogmortonfrogmorton Posts: 25,823 ✭✭✭

    Thank you Legs you are so kind. I am so sorry I could have suggested clothing to you having dressed Lucy😳 She had a poncho too. Some very wide long scarves too which we used as shawls.

    I think you are doing so very well. I think some of your shoulder shape will return after the swelling goes down, and some definition come with your increased exercise when you start your physio proper.

    I am glad you did black and white l would have been wincing otherwise!

    Those poor muscles haven't been used in years it makes sense that they will give you aches and knock-on headaches etc. You are so wise to delay your anti TNF for now, but must be scared walking that tightrope too.

    Bless you I will copy this over to the café for Barbara and the others.

    Take care


    Love

    Toni xxx
  • lindalegslindalegs Posts: 5,353

    @frogmorton

    Hi Toni, perhaps you could say what it was Lucy wore afterwards, if there are any additions? The poncho, on loan from Crinkly1, is used instead of a dressing gown too. This morning I came downstairs first leaving Mr Legs to sleep on as I'm wearing the poor man out! 😉 I've learnt how to wriggle out of my sling by bending and hooking the shoulder strap on a door handle. I can then slide it off my shoulder, slip my good arm and hand through then pushing it downwards (one handed), I step out of it! I'm not advising anyone to try this at all, ever, Both my shoulders were wrecked a long time ago so I have become an expert and well practiced with the door handle!

    With the poncho I have to resort to my faithful door handle again! I put the collar part on the handle and threaded the cape part so it was bunched up on said handle. Making sure the door was secure, I bent down and pushed my head through! I also put shoulder bags on the same way. Necessity is the mother of invention after all 😄

    Anyway suffice to say I was as snug as a bug in a rug till Mr Legs got up and got me showered and dressed!

    A flower for you I painted just before surgery!

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • lindalegslindalegs Posts: 5,353

    I am now making progress at last. I shan’t talk about timelines because that leaves it open to comparison and there’s no need for that because we all progress at our own speed.

    When I felt the time was right for me I decided to wean myself off using the sling during the day. The first day I had it the sling off for a period during the morning and then had it taken off again in the afternoon to be put back on in the evening. The following day I had the sling on up till lunchtime and then had it off for the rest of the day. Then on the subsequent day I stopped wearing it except for bedtime. I will sleep in my sling for the six weeks, as instructed. 

    The reason I wanted to stop wearing the sling during the day is that I move my operated arm doing little things, sometimes supported by my other arm, others not. I’m hoping using it for small things will become more natural the more I do it. In time I’m hoping the small movements will help to make the bigger movements easier. 

    Without the sling the arm is like a pendulum hanging from the body and is very heavy. Because my elbow is permanently bent I think makes it slightly easier for me because it’s in a sling-like position all the time. If your arm is straight then it will seem all the heavier.

    In addition to my physio-set exercises I added this one of my own. When I’m standing, I have to concentrate hard, I lift my arm away from the body as far as I’m able (which is not far at all) and then hold it whilst I count to 5 before allowing it to gently lower. I do this 5 times and am always glad when it’s over because my arm hurts and trembles! I’m sure this holding it against gravity will help to strengthen the muscles. I shall tell the physio at my coming appointment about this and see what he says. 

    I can now lift my arm from my lap and touch the underside of the table, I still have to think about it but I don’t have to work up to it anymore. If I grit my teeth I can even put my arm from my lap on top of the table but I can’t lift it above yet.  

    I did lift it onto my desk and wrote 4 words on a piece of paper and this has been my biggest achievement yet. This has told me that it will be alright in the end and I know I will be able to paint again. If I can do this now with all the bruising and swelling then I know I will be able to use my arm as I used to. This time though it will be smooth, quiet and without pain.  

    The next installment will be after Thursday and probably the last. On Thursday I am for going physio at the hospital and later having the dressings removed at the docs so I will post a photograph of my shoulder without the dressings. 

    Below is a painting I did this year. This is making me fight to get my ability back again! I know that I will do it because I’m determined to!


    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • frogmortonfrogmorton Posts: 25,823 ✭✭✭

    Thank you so much the flower is just gorgeous!!

    You are so talented Linda! I must see I have any pics of Lucy. I bet you'd like to see her scar now....hang on I will have a look later for you 😘

    Love

    Toni xxx
  • frogmortonfrogmorton Posts: 25,823 ✭✭✭

    You have to look closely! This was at Tia's wedding last summer Legs.

    and THAT is how high she can lift her arm!

    The consultant said she was incredible 😊to be fair she was only 19.

    What progress you have made n such a short time you are doing so well. Of course you will be painting again without a doubt.

    I hope you will keep posting if not as often maybe in a few weeks or a month if you can manage.

    Thank you so much and WELL DONE!!!

    Love

    Toni xxx
  • lindalegslindalegs Posts: 5,353

    @frogmorton

    Hi Toni,

    Wow Lucy is a very beautiful girl isn’t she! I can only just see her scar but I’m sure that if it were awful it would be detracted by her lovely face. I notice too how smooth her shoulder looks and she must have worked hard to get as much mobility as she has! Good girl Lucy.😀

    I won’t let this be my last set of posts on the VA site. As long as I can contribute helpful comments I will find the time to drop in again. I did stop coming on as regularly as I used to purely because whatever I had to say had already been said before I had chance to comment so there seemed no need for me to be around.

    When I am able to type more easily I shall be back again. Thank you once again for your kind comments and encouragement I have certainly enjoyed doing this thread even though it has been quite time-consuming! One good thing about lockdown is that some of us have time on our hands again.

    Will post my last installment after tomorrow.

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • frogmortonfrogmorton Posts: 25,823 ✭✭✭

    Thank you Legs - she is gorgeous isn't she? and next to her is Charley my eldest and the bride is my step-daughter Tia. Wedding was last summer (lucky weren't we?!).

    Yes the pandemic has had some benefits time being one of them. I am sure for children all that lovely sunny time with Mum and Dad and no school!

    You should contribute anyway when you can type more comfortably - even if you are reiterating other people's comments it is reassuring to hear I quite often agree with other people. I just remember how much help everyone was to me firstly when I was 'new' and then when Lucy had her cancer treatment and all these surgeries.

    Look forward to tomorrow's installment 😘

    Love

    Toni xxx
  • YvonneHYvonneH Posts: 476 admin

    Hi Linda,

    You are truly inspiring, thank you for starting this great resource for anyone who needs a TSR in the future.

    I'm looking forward to seeing more of your artwork too as we go along with you in your journey. You will get back to painting, you have the will and the dedication - and the talent

    Love

    Yvonne x

  • lindalegslindalegs Posts: 5,353

    @YvonneH

    Thank you so much Yvonne. I am hoping this thread will help anyone having to have surgery. It's good to know people are reading it which, in itself, encourages me on. I'm glad I started it ☺️

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • barbara12barbara12 Posts: 20,814

    Hi Linda

    Sorry this is late but our lovely Toni has kept us updated knowing my eyes aren't good, so only read what I can

    Like Toni says you write so well and I am sure this will be of help to others

    So glad to hear things are moving on for you..slow but sure..but knowing you it won't be that long 🙂

    Your painting are absolutely beautiful, I love art but so how much I try..never improve.. you keep up the good work ..many hugs and love ((((()))) xxx

    Love
    Barbara
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