Shoulder replacement surgery failed

Good afternoon all,

My first post and I'm struggling here so please bear with. I really hope someone can help me here, I'm looking for people who have or know someone who has had experience with this. Long story short I have AS and have bi-lateral hip and shoulder replacements. My shoulder replacement is failing, I found out yesterday and I'm devastated. The replacement is eroding away the socket. There is no stopping it, no exercise to help slow it down, I'm powerless. I don't know how long it has left, could be months or years but it's bad. I'm 39 years old. The options are:

Nerve block to help with the pain and hold out as long as possible before having a total shoulder replacement.

A total shoulder replacement.

Taking out the usual risks of surgery, I've been told that the full replacement might not last because they are for people much older and thus less active than me. I'm scared that I could lose the function of my arm by the time I'm 50 and when I mentioned this, the hospital did not comfort or correct me. I'm not in a good place with this so I'm looking for some hope I guess. I'm trying to get a second opinion from a private hospital but so far I've not been able to get through.

Has someone been in this position or know someone that has. Please though, no horror stories, I'm scared enough as it is and I don't think I could take more on. Positive vibes only - yes I know that's not how the world works but I'm still getting my head around this and just need some support and hopefully someone out there to say there is hope, the technology is there or chin up because of x

Thank you for reading.

Comments

  • Shell_H
    Shell_H Member Posts: 548

    Hi @NotOutYet - welcome to the online community!

    I see you've previously had a bi-lateral hip and shoulder replacements, but your shoulder replacement is now failing and you've been advised that you can either have a Total Shoulder Replacement now, or wait it out as long as you can before having one. This is because a Total Shoulder Replacement may not last the full rest of your life and isn't designed for people as active as you. You're looking for advice or experience others may have to help you.

    One of our more regular members @lindalegs has actually done a long-term thread showing their experience and recovery after a Total Reverse Shoulder Replacement - do have a look at their thread here (it is quite long and really interesting)

    There's also a shorter thread with some discussion here on shoulder replacements.

    Versus Arthritis does have some information here which may be of help, and it does mention that while a replacement joint normally lasts 10 years, you can have revision surgery at this point to help it or replace it.

    On a serious note: I would consider how much function you would have now if you took the hold out as long as possible option. You're worried about losing function in the arm years later if you have a Total Replacement now, but how much function will you have now if you don't have one? Is it worth waiting, and realistically how long do you think you could last with the pain? Would a year or 5 make a difference in the long run? Would 10 years make a difference? How long would you have to hang on before it was worth it? I know it's not a fun topic, but those are questions I'd be asking myself.

    I'm sure other members of the community will be on soon to offer their thoughts and experiences. Do please have a look around and see if you can find anything which helps you, and let us know what you decide.

    Lovely to meet you!

    Shell

  • NotOutYet
    NotOutYet Member Posts: 4

    @Shell_H

    Hi, thank you for taking the time to reply and providing me with that information. I've contacted lindalegs through her last post. It's definitely encouraging to hear she is doing okay a year after.

    At this time, I've not been offered the TRSR or any other replacement. The hospital is going to speak with the medical board to discuss my case. I can't see how I can be the only one at my age needing this surgery. They've told me at the moment to hang on as long as possible because once I have this surgery, I'm out of options if it wears out or fails. This is the part I'm scared about. I don't have a great deal of movement currently in both arms but I've adapted over the years as you do. I've managed to get an appointment with a surgeon this evening (he's now late) to discuss this as I'm not accepting my fate at the moment. He might say that's it and if so, I'll have to deal with it but I'm hoping he will give me some light at the end of this very dark tunnel I'm hurtling down!

    Thank you for the questions, they've helped and I've answered most of them. I'm hoping someone with a similar experience will be able to help me or know someone in a similar situation. It's all about my age, that's the issue here, I'm too young and the research and technology is either not being done because it's not common enough to warrant the funding or it's simply not important enough when you compare it against knees and hips.


    Anyway, thank you again for reaching out.

  • Shell_H
    Shell_H Member Posts: 548

    Hi @NotOutYet - I'm glad I could help some. I know the feeling of being too young - I'm 38 and have arthritis in my knees and possibly my ankle now as well. I'm lucky I don't need any surgery yet, but I do understand the fear.

    I have absolute faith that you'll make the best decision for you, and I'm sure someone with more experience will help as well.

  • frogmorton
    frogmorton Member Posts: 28,046

    Hi @NotOutYet

    My own daughter had her shoulder replaced at the age of 19 - 5 years ago - it had totally collapsed. Like you we were terrified due to her age.

    Lengthy cancer treatment had led to avascular Necrosis which did the damage. We retain the anxiety about the future when she almost certainly faces further surgery.

    We did change surgeon because the first one we saw was too negative. We didn't need that we all left in tears.

    Whatever happens she is young now and needs her life.

    Take care

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