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Anyone had total shoulder replacement?

smith007smith007 Posts: 13
edited 2. Feb 2017, 12:36 in Living with Arthritis archive
Just been diagnosed with severe glenohumeral OA (Dec16).
Surgeon given me 2 options
- capsule release / debridement
OR
- TSR.
Looking for info from anyone who's had a TSR.

Also anyone who did this in 2 steps (debridement then TSR)

Many thanks.

Comments

  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums, Smith007, from the moderation team.

    We have some great members here with a wide range of experiences of arthritis and of living with the condition, many of whom have had various surgeries, including TSR. I am sure you will get lots of support and information from them.

    As moderators we are here to help with any problems you may have using the message boards so feel free to send us a message if you need to.

    Please do join in wherever you like, you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes

    Ellen
  • frogmortonfrogmorton Posts: 26,187 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Smith0007

    Welcome to the forums from me too :)

    My daughter (19) had a TSR last Monday a week ago today, so although I have no personal experience I have plenty of second hand experience!

    My daughters humeral head was totally collapsed and she was unable to lift her arm more than about 5 - 10 degrees in any direction.

    This was a result of Avascular necrosis caused by treatment for Leukaemia at 16 -18 and half years of age.

    We were very lucky because her glenoid is intact - I believe yours is affected as well as your humeral head?

    There was no possibility of arthroscopy/debridement surgery as the 'ball' was no longer a ball. I am pretty sure we would have gone for the lesser procedure, had it been available to her we did with her hip which also has AVN. At 19 she faces a future filled with revisions on the arm. the surgeon advised it will need surgery in maximum 10-15 years time.

    Her surgery was done at Wrightington hospital in Lancashire. Obviously she is considerable pain at the moment, still being very much in the acute phase, but can already lift her arm up in front of her about 20 degrees :)

    I hope this helps a little - if I can be of any help please do ask.

    Take care

    Toni xx
    Love

    Toni xxx
  • smith007smith007 Posts: 13
    edited 30. Nov -1, 00:00
    frogmorton wrote:
    Hello Smith0007

    Welcome to the forums from me too :)

    My daughter (19) had a TSR last Monday a week ago today, so although I have no personal experience I have plenty of second hand experience!

    My daughters humeral head was totally collapsed and she was unable to lift her arm more than about 5 - 10 degrees in any direction.

    This was a result of Avascular necrosis caused by treatment for Leukaemia at 16 -18 and half years of age.

    We were very lucky because her glenoid is intact - I believe yours is affected as well as your humeral head?

    There was no possibility of arthroscopy/debridement surgery as the 'ball' was no longer a ball. I am pretty sure we would have gone for the lesser procedure, had it been available to her we did with her hip which also has AVN. At 19 she faces a future filled with revisions on the arm. the surgeon advised it will need surgery in maximum 10-15 years time.

    Her surgery was done at Wrightington hospital in Lancashire. Obviously she is considerable pain at the moment, still being very much in the acute phase, but can already lift her arm up in front of her about 20 degrees :)

    I hope this helps a little - if I can be of any help please do ask.

    Take care

    Toni xx

    Many thanks Toni. My best wishes to your daughter. What a nightmare. At least showing signs of positive recovery?

    Unfortunately i have OA on both numeral head and glenoid. I'm 56, so it's age-related wear n tear.
    I'm looking for someone with similar history to understand how long r covers takes and if they've been able to return to active lifestyle/sports.
    Thanks for your reply and all the best
    Dave.
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    This, from Arthritis Research UK, might help, Dave.

    https://tinyurl.com/nh9e3y6
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • smith007smith007 Posts: 13
    edited 30. Nov -1, 00:00
    This, from Arthritis Research UK, might help, Dave.

    https://tinyurl.com/nh9e3y6

    Thanks sw, I have seen most of the availble research online. Sadly it doesn't make the decision easier.

    I need access to someone who has actually gone through it for the live experience. I've searched the forums too and those that have shared experiences, typically are doing so 2nd hand or (like Toni) with diagnoses related to trauma not OA. It seems few TSR are done (even though my surgeon does 30-40 a year). Unable to get to his patients with privacy laws.

    The challenge I have is that the surgeon says either operation could work. But with the debridement/capsule release there's no guarantee of pain relief. And possible/likely a TSR may still be needed within 8-12 months.

    As I am likely to have a left THR (right hip done in 2015) it's a hard decision as it could mean another total joint replacement when I've been out of work for 2 years already (self-employed and unable to get paid work). At this rate I'm discovering OA in joints each year... (on NHS that means the slow train).

    So a bit of a challenge which I have to decide by 3 Feb...

    Anyway thanks for your interest.
    Dave
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    I don't envy you. It's a tough choice.

    I guess it's disappointing to find no-one who's had it done. That will be partly because it's not such a common operation as hips and knees. We get very few shoulder ops on here. Lots of hips and knees and a fair few ankles but shoulders don't seem to be replaced as much.

    But you should also bear in mind that good news rarely makes headlines. Few people come on the internet to tell everyone how wonderful their operation was. If all has gone well they just get on with their lives. The internet is usually skewed in favour of hard luck stories.

    On the plus side your surgeon seems to do a lot of shoulder replacements which makes him a good choice if you go ahead with it. I think, if it's he you have to see on the 3rd, he'd be the best one to answer any questions you have re pain, range of movement and lifespan of a new joint.

    Personally I don't think I'd reckon 10 years to be a good enough lifespan for a new joint but I've been exceptionally lucky with my THRs and TKRs. And I'm past retirement age.

    I hope whatever decision you make it turns out for the best.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • smith007smith007 Posts: 13
    edited 30. Nov -1, 00:00
    I don't envy you. It's a tough choice.

    I guess it's disappointing to find no-one who's had it done. That will be partly because it's not such a common operation as hips and knees. We get very few shoulder ops on here. Lots of hips and knees and a fair few ankles but shoulders don't seem to be replaced as much.

    But you should also bear in mind that good news rarely makes headlines. Few people come on the internet to tell everyone how wonderful their operation was. If all has gone well they just get on with their lives. The internet is usually skewed in favour of hard luck stories.

    On the plus side your surgeon seems to do a lot of shoulder replacements which makes him a good choice if you go ahead with it. I think, if it's he you have to see on the 3rd, he'd be the best one to answer any questions you have re pain, range of movement and lifespan of a new joint.

    Personally I don't think I'd reckon 10 years to be a good enough lifespan for a new joint but I've been exceptionally lucky with my THRs and TKRs. And I'm past retirement age.

    I hope whatever decision you make it turns out for the best.

    Thanks for that- good advice and I do accept the reality of whats out there. Just hoped to find someone with similar situation.
    I won't get access to the surgeon again - NHS allows 10min. which isn't conducive to getting the answers to make a selection between tough choices like this.

    My concern was more that if I have 3-4 joint replacements (THR/TSR), then facing revisions as they need replacing (10-15-20 years time) makes for a tricky life when I'm 65-80. I do expect medicine to advance rapidly, but don't think they can reverse age problems for revisions when your bones start to fracture, etc. Who knows? Some would say I'm pessimistic - just how my mind works in decision mode.

    Anyway thanks for the helpful thoughts.
    Dave
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Just for the record - and this might be of no use at all - I've had RA since I was 15. At the time there were no decent drugs to hold it back so OA soon set in and I had two TKRs in 1981 when I was 35. I had two small boys and I reckoned, whatever the future, I needed the knees then.

    About 8 yrs ago I had one of them revised. The revision is perfect but is a very long implant which required bone grafts. I'm not sure it'd be possible to do another revision on it.

    Meanwhile, its opposite number is still vaguely functioning some 36 years on. Not well but still there. I've also got two THRs , one about 20 years old or more, giving no bother.

    Bear in mind as I have RA in virtually every joint - and OA in most - I have never put my implants under much pressure. I walk and do exercises but that's about all -no sport, dancing etc. And I know I had excellent surgeons. The same one did both hips and the revision.

    I thought all this just worth mentioning. None of my implants are shoulders and I've had no shoulder surgery but, with care (and by thart I mean regular, boring exercises), these things can last
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • smith007smith007 Posts: 13
    edited 30. Nov -1, 00:00
    Just for the record - and this might be of no use at all - I've had RA since I was 15. At the time there were no decent drugs to hold it back so OA soon set in and I had two TKRs in 1981 when I was 35. I had two small boys and I reckoned, whatever the future, I needed the knees then.

    About 8 yrs ago I had one of them revised. The revision is perfect but is a very long implant which required bone grafts. I'm not sure it'd be possible to do another revision on it.

    Meanwhile, its opposite number is still vaguely functioning some 36 years on. Not well but still there. I've also got two THRs , one about 20 years old or more, giving no bother.

    Bear in mind as I have RA in virtually every joint - and OA in most - I have never put my implants under much pressure. I walk and do exercises but that's about all -no sport, dancing etc. And I know I had excellent surgeons. The same one did both hips and the revision.

    I thought all this just worth mentioning. None of my implants are shoulders and I've had no shoulder surgery but, with care (and by thart I mean regular, boring exercises), these things can last

    Thats again helpful to understand. I am moving towards optimism on the revision dates - and the fact we can all only forecast 3-5 years...
    Thanks
    Dave
  • frogmortonfrogmorton Posts: 26,187 ✭✭✭
    edited 30. Nov -1, 00:00
    Dave

    I would be very interested to hear what you decide to do. I have been told Lucy faces a lifetime of surgery, so I understand your concerns and they way you might be thinking.

    I am told her new shoulder will wear out the glenoid in as little as 7 years so she will need a new glenoid too.

    The good news is that she already has more movement than pre-op and she is only on day 9 :)

    Keeping on talking and thinking should, at least, help you come to a decision I hope.

    Love

    Toni x

    Ps another consultant had wanted her to wait for funding for a donor bone replacement. Allograft. That I think might be the next thing for the future. Unfortunately Lucy's pain was too great to wait.
    Love

    Toni xxx
  • smith007smith007 Posts: 13
    edited 30. Nov -1, 00:00
    frogmorton wrote:
    Dave

    I would be very interested to hear what you decide to do. I have been told Lucy faces a lifetime of surgery, so I understand your concerns and they way you might be thinking.

    I am told her new shoulder will wear out the glenoid in as little as 7 years so she will need a new glenoid too.

    The good news is that she already has more movement than pre-op and she is only on day 9 :)

    Keeping on talking and thinking should, at least, help you come to a decision I hope.

    Love

    Toni x

    Ps another consultant had wanted her to wait for funding for a donor bone replacement. Allograft. That I think might be the next thing for the future. Unfortunately Lucy's pain was too great to wait.

    Thanks Toni. Tough situation for Lucy and you. Hope the good signs continue. Some consultants err on side of caution with their predictions, so hopefully Lucy gets much longer implant life than forecast. She has youthful resilience on her side too.

    I am choosing TSR in the absence of any contrary advice. I can't afford to take the uncertainty of pain returning if I choose the lesser capsule release arthroscopy. That would mean doing the TSR anyway in 6-12 months. If I was on private medical I would get further X-rays etc to validate the extent of my OA. With 15 mins to decide what my options are with NHS surgeon, it's impossible to make a fully informed decision. A shame but that's life in the uk.

    As I'm self employed (and out of work 2 years) now, I can't add another operation into the next 2 years. I already am deferring a 2nd THR which will demand attention in 12 months time.

    So that's it from me.

    All the best to you and Lucy.
    Dave
  • mermaidmermaid Posts: 104
    edited 30. Nov -1, 00:00
    Hi there, sorry I have come in a little late but wanted to wish you well with your total shoulder replacement.I have had severe RA for 45 yrs and had both my shoulders replaced in the 1980s when I was in my 30s. At the time it was pioneering surgery and I am told it is done differently now and recovery much quicker. It was done at RNOH Stanmore. I was told the surgery was done for pain relief rather than great function but it was successful.Working at physio exercises afterwards is crucial for success as with any replacement joint. Because of
    extensive RA my activity is restricted anyway, but the pain relief is so worth it. Sounds like you have made the sensible decision, having two lots of surgery is tougher on the body especially if close together. Good luck with it all, Liz
  • mermaidmermaid Posts: 104
    edited 30. Nov -1, 00:00
    For Toni: apologies for hi-jacking your post to Dave . My heart goes out to Lucy, she has been through so much at such a young age. I wish her all the very best and courage to keep on fighting as she clearly does. My thoughts are with you, so hard to see your child suffer. Take good care all of you xx
  • smith007smith007 Posts: 13
    edited 30. Nov -1, 00:00
    mermaid wrote:
    Hi there, sorry I have come in a little late but wanted to wish you well with your total shoulder replacement.I have had severe RA for 45 yrs and had both my shoulders replaced in the 1980s when I was in my 30s. At the time it was pioneering surgery and I am told it is done differently now and recovery much quicker. It was done at RNOH Stanmore. I was told the surgery was done for pain relief rather than great function but it was successful.Working at physio exercises afterwards is crucial for success as with any replacement joint. Because of
    extensive RA my activity is restricted anyway, but the pain relief is so worth it. Sounds like you have made the sensible decision, having two lots of surgery is tougher on the body especially if close together. Good luck with it all, Liz

    Thanks for your experience and the kind thoughts Liz.
    Best
    Dave
  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Dave

    Although I have had a TSR because of OA in 2015 I do not think that I can really help you. I have also had two total knee replacements and one revision, done last year which has made no difference to pain when going up and down stairs. My joints are bad! ;)

    The TSR operation was a success according to my surgeon and there is no arthritis there now. Unfortunately after having so much physio for over a year I was still very restricted in what I could do with the shoulder. I was ok at worktop level but reaching in a cupboard for something or hanging out the washing was a no-no without help with the other arm.

    Two weeks ago I had a shoulder operation to mend/repair the deltoid muscle. I am wearing a sling now for 6 weeks 24/7. I see the surgeon in two weeks (month post op) and hope I do not have to wear the sling so much after seeing him. I only have one tiny physio exercise to do which moves the deltoid muscle ever so slightly. The main objective at the moment is for the deltoid muscle to hopefully heal. I have no guarantee that in time the pain will go and or I shall be able to use the shoulder/arm more.

    I was diagnosed with Milwaukee shoulder Syndrome which unfortunately is rare. Also unfortunately the other shoulder is very painful now too. The surgeon is not surprised that this has happened. Nor am I either. :(

    I wish you well with your operation.

    Elna
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • smith007smith007 Posts: 13
    edited 30. Nov -1, 00:00
    elnafinn wrote:
    Hi Dave

    Although I have had a TSR because of OA in 2015 I do not think that I can really help you. I have also had two total knee replacements and one revision, done last year which has made no difference to pain when going up and down stairs. My joints are bad! ;)

    The TSR operation was a success according to my surgeon and there is no arthritis there now. Unfortunately after having so much physio for over a year I was still very restricted in what I could do with the shoulder. I was ok at worktop level but reaching in a cupboard for something or hanging out the washing was a no-no without help with the other arm.

    Two weeks ago I had a shoulder operation to mend/repair the deltoid muscle. I am wearing a sling now for 6 weeks 24/7. I see the surgeon in two weeks (month post op) and hope I do not have to wear the sling so much after seeing him. I only have one tiny physio exercise to do which moves the deltoid muscle ever so slightly. The main objective at the moment is for the deltoid muscle to hopefully heal. I have no guarantee that in time the pain will go and or I shall be able to use the shoulder/arm more.

    I was diagnosed with Milwaukee shoulder Syndrome which unfortunately is rare. Also unfortunately the other shoulder is very painful now too. The surgeon is not surprised that this has happened. Nor am I either. :(

    I wish you well with your operation.

    Elna

    Well Elna, after reading that I guess my lot is not so bad.
    I've committed to having the TSR now so will go through with it. I know its complex vs my hip replacement, but my choice is driven by pain and the need to get back to activity.
    I just have to trust the surgeon and hope for the best.
    Sorry to hear of your outcome - hope your progress is swift.
    Dave
  • frogmortonfrogmorton Posts: 26,187 ✭✭✭
    edited 30. Nov -1, 00:00
    mermaid wrote:
    For Toni: apologies for hi-jacking your post to Dave . My heart goes out to Lucy, she has been through so much at such a young age. I wish her all the very best and courage to keep on fighting as she clearly does. My thoughts are with you, so hard to see your child suffer. Take good care all of you xx

    Thank you so much Mermaid (and Dave too). I am very heartened to hear that she should get good function, so long as she does her physio. She is doing it with gusto; in fact needing to be held back! I will stop welling up now.

    Dave please do let us know how you get on. I understand you have lost a lot of time already. We felt the same - Lucy lost 2 years to leukaemia and now this year to her shoulder.

    Best of luck

    Toni xx
    Love

    Toni xxx
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