Full Knee Replacement: Good or Bad Idea?

Danyaroo
Danyaroo Member Posts: 5
edited 4. Jan 2013, 16:33 in Young people's community
Hello all :) newbie here!

I was diagnosed with RA when I was 14 and I am now 22 and like most I have gone through numerous flare ups and occasional 'calm' periods. But for the last few years my knee has been in constant pain and a few days ago, I was rather bluntly told that, in the doc's words, 'the knee is basically beyond repair' (no cartilage and much bone on bone) and the only real course of action they could take would be a total knee replacement. But they want to put it off for as long as possible due to my age. So when I got home I looked it up properly and found people in their fifties are often considered 'too young' for a total knee replacement due to wear on the new joint. So how long exactly do they plan to put it off for me?! I've had an arthroscopy on the joint a while back that did little but reduce fluid build-up for a while and the medications I'm on do little for the joints pain (though they do keep most of the other 13 or so affected joints in check most of the time) and this includes various direct to joint injections.

I currently can’t work and more often than not need crutches to walk. I barely got through my first year of college and that says nothing of my near none existent social life...

So rambling done, is it a good idea for me to press for the knee replacement at my next appointment? I'm aware that I'd need another op a decade or so after due to wear. But I really want to have a life again or even just get a job and I'm quite tired of being told to 'see how it goes' when the joint clearly isn't going to get any better. :(

Comments

  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Dany

    Welcome to the forum. I am sorry to hear that you have had RA from such a young age and at 22 your knee is shot. I can well understand your logic in wanting your life now and not in x number of years. Who knows what the future holds? The consultant has admitted to you that you do need a new knee, but ..... I wonder what he would say if it was his son that was in the same situation as yourself. I am an oldie (with OA) and I had one knee and then the other replaced at 57 and 59 years of age. I was told to wait until the pain was unbearable and it was really encroaching on my quality of life. In all I think it was about 5 years that my quality of life suffered with it all gradually getting worse. It never got so bad that I needed a walking stick. I am so pleased that I had them done. There are forum members with RA who have had their knees replaced much earlier than me. Hopefully they will see your posting and chat to you about it.

    I do hope that if you really wish to have the op and it is true there comes a time when one truly knows that, your consultant will weigh up the pros and cons of it all with you at your next appointment and come to the conclusion that it would be in your best interest to have the op sooner than later.

    Elna x
  • Danyaroo
    Danyaroo Member Posts: 5
    edited 30. Nov -1, 00:00
    Hello Elna, thank you for responding :)

    Thank you for the advice also. I plan to have a good long talk about it at my next appointment. I would just like some opinions on the matter before hand since I know next to nothing about joint replacement regularity in people under 30. And I'm concerned about being brushed away from a potential long term solution just because the rest of me wasn’t willing to age as quickly as my knee...

    I also have a small issue of almost never being seen by the same doctor. Even when I am under said doctor’s specialist clinic, due to patient numbers and time constraints, more often than not, I see a man/woman who knows little to nothing of my history, has never seen me before and will probably never see me again. And will refuse to even consider anything more in depth than a medication review and a possible future x-ray (I have a charming collection in my file by now I’m sure ;) ). So let’s just hope I get to see my doc twice in a row haha.

    Though the latter paragraph is something I'm sure many patients in many departments suffer through the years.
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Get it done young man, that's my sage advice. You are at the right age to both feel and reap the full benefit of a new joint and the revision may not be such an issue as others would have you believe (by others I mean docs). There is a lady on here who has had the same knee joint for thirty years. I am waiting to have both of mine replaced (I need to be 55, two years to go) by which time the OA in my ankles will have become much worse, never mind the further joint damage caused by the PsA I have elsewhere (which has led to the OA). By the time I qualify on age grounds I do wonder if there would be any point in my having new knees as the rest of me will be shot to bits. Go for it, lad, be prepared for a possibly lengthy recovery time, but it could make all the difference to the quality of your life and that is what counts.

    My cousin's wife is now on her third knee, having had the first replacement done at the age of 18. Why so young? She had bone cancer and there was no quibble about doing that for her. Arthritis is just as destructive, methinks, yet they always ALWAYS mumble on about being too young, which at the age of 53 (me) is a ridiculous statement. Good luck and do let us know how you get on. DD
  • Danyaroo
    Danyaroo Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you. I'll be sure to post the goings on though I unfortunately have a two month wait until I can next be seen. I'm sorry to hear about your own ops delay though, my mum had a similar issue (part of the source of my concern) and her 'better' knee wore out as she waited simply through overcompensating for the other for so long. That one has since been replaced also.

    Theres just one small thing, not your fault as I dont believe its clarified anywhere and my name isnt much of a clue, but I'm a girl hehe. :wink:
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Oooops. :oops: Sorry. :oops: DD
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Danyaroo wrote:
    I also have a small issue of almost never being seen by the same doctor. Even when I am under said doctor’s specialist clinic, due to patient numbers and time constraints, more often than not, I see a man/woman who knows little to nothing of my history, has never seen me before and will probably never see me again. And will refuse to even consider anything more in depth than a medication review and a possible future x-ray (I have a charming collection in my file by now I’m sure ;) ). So let’s just hope I get to see my doc twice in a row haha.

    Though the latter paragraph is something I'm sure many patients in many departments suffer through the years.

    Hi again Dany

    Yep, you are right, a common story and not helpful really is it? Could you ask to see the consultant that said 'the knee is basically beyond repair' if at your next appointment, you see yet another medic in that department :roll: :wink: and say that you do not mind waiting (that is if he still works there!) :roll:

    Elna x
  • stickywicket
    stickywicket Member Posts: 26,631
    edited 30. Nov -1, 00:00
    Hi Danyaroo and welcome from me too.

    That’s not an easy decision and I think you are very wise to examine the issue from all angles. It’s also harder for you if you’re not seeing the same consultant regularly.

    I am the ‘lady’ (Thanks, DD – first time she’s called me that :lol: ) who’s the proud owner of a 31 yr old TKR. Maybe I should put that in context. I was diagnosed at 15 and got the two TKRs (Both my knees were knackered) at 35. It was pointed out that I was young, they wouldn’t last etc but I had two small boys and reckoned I needed my knees then and would take my chances later.

    It worked out brilliantly for me. One TKR was replaced 2-3 years ago. The other soon will be. My revised one is great though I’m not allowed to ride now as there’s an ongoing risk of infection.

    If I had to make the same decision today I’d do it all again BUT please bear in mind that all my prostheses (I also have 2 THRs) were done at a large teaching hospital which attracts excellent surgeons and takes follow up care very seriously. (The surgeon who did my revision also did one of my hips and is currently monitoring the other knee.) I have heard some horror stories on here of patients being virtually abandoned after surgery and things going wrong as a consequence.

    Best of luck with the decision making.
  • Danyaroo
    Danyaroo Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you for the welcome. But wow... 31 years. That is impressive! :lol:

    As for after care and such, same as you the hospital I attend is a very large teaching hospital and while I know every case is different, my mum was very well taken care of before, during and after her two ops. So naturally, should this whole thing go through, I'd hope for the same.

    But so far, I'm leaning more towards going for it than not. Especially since being reassured by the comments here that it can be done in younger folks and that it isn’t necessarily a ticking time bomb of destruction with a very set deadline they're putting in there. Naturally, I'll get my curious little mitts on a full, non-biased professional opinion before making anything definite. But my worries have definitely been eased some. :)

    (Why couldn’t I have found this forum about 5 years ago?! :cry: )
  • stickywicket
    stickywicket Member Posts: 26,631
    edited 30. Nov -1, 00:00
    If your Mum’s had good care at your hospital that’s a big plus. One thing I had in my ‘favour’ :roll: and you might have in yours, is that my RA always affected virtually every joint in my body and, as such, I was never likely to go at anything hell for leather and so wear my TKRs out more quickly. I did no high impact sports of any kind, just used them for walking (a lot), driving, shoving furniture about :roll: etc.

    If you'd like more opinions, you could copy your post to the Living With Arthritis forum. More people will see it there.
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Now that has made me smile - you and your 'curious little mitts'! I too was thankful when I found this forum, it has made a great difference to my life and the support one receives is wonderful. It's an informed audience on here, so talk to us whenever you need. As Sticky pointed out more people are to be found on the LWA part of the forum, but she, me, Elna and one or two others pop in on here on a regular basis - we'll keep an eye out for you, that's a promise. DD
  • EmmaJane12
    EmmaJane12 Member Posts: 4
    edited 30. Nov -1, 00:00
    Wow...so this is a bit of scary fate.

    I am also 22 years old and have suffered arthritis since i was 17.

    I was told in July 2012 that my right knee is beyond saving, no cartilidge and bone on bone...and I am having my right knee replaced in October!

    For me, the quality of life factor completely outweighed any negatives for my age. My right leg has formed quite a "bow" to the left when I walk now, and I only can do with crutches. I would rather live to 30 with a good knee than 80 with this knee - needless to say, I have suffered great depression from this.

    I would love to chat to you - i have never met someone my aged with RA, let alone someone who may be having a knee replacement too! I have researched the procedure too, and yes patients in their 50's is the norm, but my surgeon has also performed the procedure on a 30 year old. Its not unheard of :)

    I hope this helps in any way!! :)
  • littlemum
    littlemum Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi everyone

    I can see this thread was initially started some months ago, and I hope the OP has had success in her TKR surgery (if she had it).

    I am a 31 year old single mother of 2 children, I had knee problems as a teenager, and eventually diagnosed with OA at the age of 19 when I had a right knee arthroscopy. I had one performed on the left knee a few years later and OA was also diagnosed. I was informed it would get worse as I got older!

    Last year, when I was 30, I had repeat arthroscopy surgery on both knees again, X-Rays and MRI scans had indicated that the OA was still in it's early stages, however, from the surgery it was discovered to in fact have progressed to Grade III. Unfortunately, the arthroscopies have also increased my pain.

    I was discharged by my local hospital as I am 'too young' for them to do anything else. My care is provided by my GP and the local Pain Service, I am taking 500mg Naproxen twice daily, 30mg MST (prolonged release morphine sulphate) twice daily and also take Lansoprazole to protect my stomach. I have difficulty sleeping, my social life has become non existant, there are days I cannot even walk my daughter to school! I spend the majority of my life at home staring at the same four walls every day.

    My GP was very unhappy that the hospital will rather addict me to morphine instead of offering TKR as a solution to give me my life back, so she re-referred me to see the main Orthopaedic consultant for a second opinion, and my appointment was yesterday. On arrival at the clinic I was sent for X-Rays, these have indicated changes since my last set, I was an absolute wreck describing how my life is now, living every day in pain, having to shelve all my plans of working, not being able to do many things with my children etc, and he says basically they have exhausted all things they can do and he will not consider me for knee replacement surgery, he also told me to tell my GP not to send me to him again as he will not do anything. He really knocked me down and I feel like giving up now, do they really expect me to carry on until I am in a wheelchair???

    A few friends have advised me to ask for a referral to Wrightington Hospital, near Wigan, as this is a centre of Orthopaedic Excellence, but I don't feel strong enough to take another knock back.

    The system is all wrong! Young people are the ones who need to have quality of life, not live like this!!!
  • chookgate
    chookgate Member Posts: 146
    edited 30. Nov -1, 00:00
    Hello - another newbie here. As the above post, I see this thread was started a few months ago, but I wanted to share my experience. I am 52 and 6 months ago I could barely stand up, never mind walk, due to OA in both knees. My GP wouldn't even refer me to a consultant, saying the NHS had strict rules regarding age etc ... all he would do is refer me for physio - the statutory 3 sessions later and no improvement (surprise surprise) I was told the next step would be steroid injections. I really couldn't see how steroid injections (pain relief) would help me straighten or bend my knees since there were so many bone growths in the way preventing it! Luckily for me, due to a recent inheritance (not so lucky for the relative), I could afford to go private, and now I have two brand new knees - one 5 months old and one 6 weeks old, and I feel like a new woman. I can stand up straight for a start - and move around under my own steam. I'm obviously still working on the physio, but I am so pleased I had it done - and I'm thinking I'd rather have a minimum 10 years being able to have a life with the prospect of more replacements down the line, than be in a wheelchair waiting to be old enough for the NHS to help. And it was cheaper than I expected!

    So I agree with everyone who's already posted. Have new knees, take out a loan if you have to, movement is such a joy to have.

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