Knee pain arthritus

Onetitwonder
Onetitwonder Member Posts: 3
edited 19. Aug 2022, 08:26 in Living with arthritis

I am 55 and been suffering from oa in knee since 2018 & I have had an arthroscopy which helped a bit but now knee is bone on bone and my physio at gps is really reluctant to refer me to orthopaedic surgeon again as he said I am too young for a knee replacement. I have insisted and he wasn’t happy as he said they will say exactly the same thing ‘no’ and I will just be ‘glogging up the nhs waiting lists!’ My quality of life is getting worse / I can’t wait until I am sixty it’s too long! Pain is awful - if I was rich I would have op tomorrow/ anyone else in same situation - I need someone to moan to! Thank you x

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  • Poppyjane
    Poppyjane Moderator Posts: 721

    Hello @Onetitwonder welcome to the online community

    You have OA in your knee and would like to be referred for a knee replacement but your physio suggests that you are too young for it. You ask if any of our members are in a similar situation. Certainly there are many members who have had replacement surgery and who have been relieved of pain and gained extra mobility as a result.

    I attach some links which I hope you will find helpful

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    We are here to support you whilst you try to resolve your referral to an orthopaedic consultant and don't mind that you want to moan ! We are here for all your ups and downs so keep posting.

    Meanwhile the more prepared you can be for an operation if that is the route you are travelling towards, the better. So do take time to look at the exercises videos and build up your muscle strength and joint mobility as much as possible it will improve your mobility now and help your recovery post operation in the future.

    Let us know how you get on with your referral.

    Take care

    Poppyjane

    If it would be helpful to talk to someone ring the Helpline 0800 5200 520

    Monday - Friday 9.00a.m. - 6.00p.m.

  • Thank you. The resident physio at my gps was very negative yesterday. He explained that arthritis pain peaks and dips which I get but I have been suffering for four years now and of course it’s getting worse. He doesnt want to refer me because a) he says I’m too young and that there will be a good chance that I would have to have it done again and if a lot of bone is taken it can lead to amputation later on. (He has mentioned this twice now)! b) I am basically wasting the orthopaedic surgeons time asking for a referral as he will also say I’m too young. C) I am clogging up the nhs waiting list. To say I am fuming is an understatement - to be honest I felt like crying at the doctors because all my family want me to push for the op and I had finally come round to the idea only to be stopped in my tracks. I have ongoing cortisone injections via a rheumatologist should I try for him to push things through do you think. I can’t see how I can wait until I’m 60 it’s too long! Any help advise would be appreciated. I have a background of breast cancer & I am convinced the hormone suppressants has caused my arthritis I was a walking fit 50 year old before.

  • Sal259
    Sal259 Member Posts: 6

    As the waiting lists are so long for TKR surgery I don’t think you are unreasonable at all for wanting a referral now. Can you ask your GP rather than the physio to make the referral for you so that the consultant can make the decision about whether you need one or not rather than the physio? Alternatively ask the rheumatologist to make the referral. Unless you are living with the pain of OA I don’t think anyone really understands how hard it can be. Good luck 🤞

  • I really feel for you! I’m 52 and have finally had both my knees replaced after seeing consultants since I was 46, they admitted I needed replacements but didn’t want to do them because of my age, I saw a new consultant ion 31 December 2020 and when I was told again that if I was 70 they would operate, I replied I won’t make 70! They finally agreed to put me on waiting list (they had also x-rayed my hips) as long as I’d accept that I was probably going to need 8 surgeries (2 x knees and 2 x hips twice) I said I’d be lucky if that was all that needed replacing, due to shoulders, elbows and ankles etc. I said I’d take a short notice appointment or a hospital further away and got a call in March 2021 from a local private hospital that did ,my ops I was never told of a risk of amputation with revision surgery just that it was more difficult. Stand your ground about getting a referral to the hospital, it’s the first step to a replacement and to say you will clog up the system is extremely unprofessional and unfair of the physio.

  • frogmorton
    frogmorton Member Posts: 29,242

    Everyone seems obsessed with depriving us of the best and most productive years of our lives! I know that we will need revisions it's obvious, replacements don't last forever, but many here have had to have them done early.

    @stickywicket for one I think @lindalegs and my own youngest had a new shoulder joint at 19 so it can and sometimes has to happen.

    Take care and stay strong ((()))

    Toni x

  • lindalegs
    lindalegs Member Posts: 5,392

    Hi @Onetitwonder,

    Toni (@frogmorton) is correct. I had bi-lateral TKRs (both knees replaced at the same time) when I was 42 (2000) so I can assure you they do do the operation whilst you're younger. I have since had one revision in 2011 but my other knee is 22 years old and still seems okay. I was told you can expect a prosthesis to last 10-15 years and the surgery can be done up to 3 times.

    If your pain has taken over all aspects of your life then I suggest you go to your rheumatalogist for referral to a surgeon or your GP. I was sent for physio and hydrotherapy before and after surgery to build up muscle support though I don't know if they still do this now. I do agree that arthritis is up and down but once your joint is bone on bone it won't have any ups, just constant pain as you will know.

    You have every right to be angry at your treatment as it's today that matters and being in constant pain is no fun.

    I do hope you can get a referral sooner rather than later.

    Love, Legs xx

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • stickywicket
    stickywicket Member Posts: 27,687

    It's possibly unheard of that I ever take issue with @frogmorton or @lindalegs but, in the interests of balance, here goes.

    I had my first TKRs after 35 years of RA and a few less of OA. They were brilliant. Later, in relays, I had hips replaced and, after 27 years of careful use, a knee revision. I was warned of the danger of possible amputation but I had every faith in my surgeon - a top man at a large teaching hospital. I was right. A great success.

    I can't remember the sequence but now I'm in the situation where the other TKR is totally gone (gone right round the corner, actually) and the THR above it - the youngest of my replaced joints- is heading into my pelvìs. This means that neither it, or the knee below it, can have surgery unless it became a matter of life or death as, chañces are, either op would shatter my pelvis anyway.

    That's OK. I'm 76 now and can handle it all while still enjoying life enormously. But I just write this to show that revision surgery should not be regarded as perfectly normal and easy. I regret none of my ops. But, I knew the score when I first had them.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lindalegs
    lindalegs Member Posts: 5,392

    Hello @stickywicket I think it's excellent giving your view with the benefit of hindsight. All I would say is that if you had to make the decision again at the same age would you have chosen to stay with bone-on-bone? If you hadn't had the first replacements how different would your life have been as your joints deteriorated and the pain worsened? We make the decision based on our current circumstances and don't look too far into the future, rightly or wrongly.

    There are always fors and againsts and I know I'm lucky too because my joint replacements and revision have been successful and I'm always glad I chose to have surgery. Not all are so fortunate and there is no gong back so it is a very individual decision and depends how much pain you can tolerate. I am having my 22 year old knee prosthesis looked at because I suspect it's coming loose but it has served me well so I can't complain. If the x-rays show that it needs revising I shall be a blubbering, snotty mess and will certainly hang onto it as long as I'm able because the thought of more surgery fills me with dread. Surgery is the last resort and always a brave decision but it has to depend on your quality of life today.

    Love, Legs xx

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • frogmorton
    frogmorton Member Posts: 29,242

    Oh no @stickywicket is falling out with me😂

    I know she isn't really absolutely it has to be a well thought out and individual decision.

    With my own daughter and her shoulder at 19 we did fear the future and i still do (i don't think she does bless her at 24 now) it comes into my mind at least once a month. How long has she got? If she gets a twinge from overdoing it. But she had no quality of life at all - at all so we trusted the surgeon (young enough to at least do the first revision) and hopes that the future will bring better options too.

    Take care guys!

    Toni xx

  • stickywicket
    stickywicket Member Posts: 27,687

    @frogmorton - never, never, never will I fall out with you or Legs😮

    I hesitated about my post above precisely because of Lucy but I reckon she is a young woman who can cope with anything after all she's been through, especially with the help of her wonderful family. But sometimes I do think it needs saying that it's not necessarily as simple as 'when one implant fails I'll get another'. Lucy has youth on her side but, for most of us, as we age we acquire more medical problems and more meds which make operations more difficult.

    @lindalegs - see above😉. I'd also add that there's no denying the NHS is going downhill. Revisions take twice the theatre time and more staff. Two people on here have both, separately, been denied joint replacements (not revisions) recently due to their atrial fibrillation despite both heart specialists telling their consultants they were stable and safe for the operation. My guess is that it's because such patients require more specialist care and longer in hospital after the op. Everything is measured out now.

    Would I have remained bone on bone? Frankly, I never knew I was. I never heard the term until I came on here about 10 years after my TKRs. All I knew were my knees were awful even by their low standards and when the rheumatologist took what I think were their first x-rays he said "You need new knees. NOW" I said I thought they only did them for OA and he replied, laughing "Oh you have that too after all the years of RA". I got a phone call 20 minutes after getting home. "Can you come in now?" I'd to get Mr SW back from work and some friends, whose boys were at the same Primary School as mine, to pick them up. But, of course I could come in. My sole aim was (as you will understand) to get my boys to independence before my entire body packed in. Well, they're either side of 50 now and we're nearly there😁

    At the time, they didn't do wrists or ankles so mine fused themselves rather well but I'd find it difficult with two fused knees😉

    I do hope your TKR is salvageable. Mine have both slid off course though the revision is still perfect. Oddly, operations have never bothered me, I think because I always felt I'd no choice and things could only get better. And they did!

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lindalegs
    lindalegs Member Posts: 5,392

    You're right SW (@stickywicket), of course, revisions aren't that simple and there is much wisdom in your post. I think this forum is a very good for differing opinions which should always go into the melting pot.

    You are always positive even with your joints gone awry!

    I'm glad your 'boys' have almost reach indenpendance. One of our sons moved back locally and is now next door but one with wife, 3 grandchildren, dogs, cats and chickens! You might say I have more carers on hand but I think it's more to do with childcare on tap! 😁

    Love, Legs xx

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • frogmorton
    frogmorton Member Posts: 29,242

    Oh no you two have scared the life out of me!!! Nearly independent and the other side of 50 or even Grandparents 🤣

    Toni x

  • stickywicket
    stickywicket Member Posts: 27,687

    And, indeed, you, too, are right @lindalegs that the forum is good for differing opinions. Otherwise, we might just as well have a crib sheet of answers to all questions. But some don’t lend themselves to stock answers as we all know and, as they say, it’s good to talk.

    I’ve always admired your (and @frogmorton's) optimism, coupled with determined hard graft to overcome all arthritic obstacles. Your thread after your shoulder replacement shows that.  I think all three of us are lucky in having loving, supportive families around us plus opportunities (Yes, often thanks to those loving, supportive families!) to be useful to others. That gives a real feel-good factor no matter how bad we might otherwise be feeling, physically or mentally.

    I’m going to shut up now (Stop cheering at the back!) as I’m getting far too soppy. Must be arthritis of the remaining brain cell.

    @frogmorton, being a grandparent is wonderful. Nothing like having kids. You get to hand them back😉

    @lindalegs, chickens? Fresh eggs? Wow!

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lindalegs
    lindalegs Member Posts: 5,392

    I'm not trying to have the last word here 'onest but .....

    ...I think the reason we come on the forum is purely to help and support otners with all our experience of having had arthritis for so long. You, SW (@stickywicket) and Toni (@frogmorton) devote a lot of time giving advice, often with humour, and friendship to people who visit the forum. I know they're grateful for this as being alone with pain and despair is an awful place to be. So pat yourselves on the back and if you can't reach I'll do it for you.

    Love, Legs xx

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