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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.
This, from Arthritis Research UK, might help, Dave.https://tinyurl.com/nh9e3y6
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.
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
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.
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.
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
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.
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