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TKR What to do?

LondonJuliette

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Over 25 years ago I had an accident and smashed up my left knee - pinned, plated and a graft from my hip ‘fixed’ it, but I’ve never been able to run or jump and have always had some pain. I was told to try to make it to 50 (I was in my 20s) but was told I would need a knee replacement at some point. So I’ve kept going, arthroscopy, synovial fluid injections and lots of physio. Swimming helps keep me mobile but I was getting stiffer. I had an xray in early 2020, which showed my arthritis was now severe and I was referred to see an orthopaedic consultant.

Then along came COVID-19, the pools shut for large chunks of last year, my appointment to see the consultant was cancelled repeatedly. In December I finally saw a consultant who told me that my knee was severe enough to warrant immediate surgery but it was complex due to the accident and previous surgery. He referred me to a complex care consultant, who confirmed that my knee is in very poor shape.

Because of the prior surgery I am at higher risk of infection, worse outcomes etc, but also a very long scar on the outside of the knee from the original surgery puts me a risk of skin loss when the new surgery is done. She basically said there is nothing they can offer besides TKR as knee is in such bad shape.

She’s put me on her list (UK NHS) for when non emergency surgery restarts. She suggested that I’m still too young (ideally) at 54 as I’m likely to need 1-2 revisions in my lifetime, but it’s time and she’s operated on many younger patients.

As I have private health insurance I asked about getting another opinion and she helpfully recommended a few names who deal in complex cases. After careful research I saw a consultant privately today. He went through much of the same stuff and was very helpful. I explained that I didn’t have a huge amount of pain but I have lost a lot of function - I can’t walk downstairs without using my arms, up is getting harder, chairs are difficult etc. He told me that I would know when I was ready.

As he hadn’t seen any X-rays, at this point I had a new set of X-rays done as I hadn’t asked for a copy from the NHS hospital. When he saw them he said that my knee was much worse than he’d expected and I really do need surgery now - but that mentally I have to be ready.

I am struggling. I think that I’ve lived with pain for so long that I have a different pain scale! I’m clearly resisting doing what needs to be done - my husband pointed out that I could just have gone privately last January and that I’ve just been putting it off, The last two consultants have both said that I’ll reach a point when I accept I’m ready, but I’m less sure! Logically I know my movements are restricted, I’m rarely pain free, and the weight I transfer to my ‘good’ side is causing issues, mild arthritis etc.

The consultant today also mentioned that while he could give me a greater range of movement, my tissues would fight against it and it would be up to me as to how much I was prepared to fight for the gains and maintain them. So now I’m worried that if I continue to put off the surgery, I’ll make it harder on myself when I do have it. I’m so lucky to have a choice of two fantastic surgeons, with a record of excellent outcomes and the reassurance that their views on my knee were almost identical.

My logical brain says just do it. My emotional reaction is to run and hide! I don’t want the pain of TKR, I have more pain right now in my mildly arthritic knee that my ‘knackered’ one, so will I struggle post surgery? Have I put up with my knee for so long that I am deluding myself about the pain I currently suffer? Any suggestions on how I go forward- or do I just wait and see if the day comes when I really decide enough is enough? i could be literally dragging myself around by then! If you’ve read this far, thank you :)
 

Pumpkin

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@LondonJuliette
Welcome to BoneSmart, glad you joined us!! :welome:
We all have a hard time deciding when is the right time to have a TKR, the information below has a score chart you can take and see just how limited your life has become.

Everyones recovery is different, even with your prior surgeries, you cannot predict your recovery one way or the other.
As for your other knee, it is doing a lot of the work of your injured knee, most likely it will be happier after a TKR to take more of the load.
The longer you wait, the more damage to your knee will occur, limiting your life further. The sooner you get it done, the faster you will be on your way to recovery.

New BoneSmart members like you are in various stages of their journey to joint replacement. Making the decision whether or not to have surgery and preparing for surgery can be easier once you have done your research and know what lies ahead. Here are some tools that can help you decide what is best for you.

If you are at the stage where you have joint pain but don't know for sure if you are ready to have surgery, these links may help:

Score Chart: How bad is my arthritic knee?
Choosing a surgeon and a prosthesis
BMI Calculator - What to do if your surgeon says you're too heavy for joint replacement surgery
Longevity of implants and revisions: How long will my new joint last?

If you are at the stage where you are planning to have surgery but are looking for information so you can be better prepared for what is to come, take a look at these links:

Recovery Aids: A comprehensive list for hospital and home
Recliner Chairs: Things you need to know if buying one for your recovery
Pre-Op Interviews: What's involved?


And if you want to picture what your life might be like with a replaced knee, take a look at the posts and threads from other BoneSmarties provided in this link:

Stories of amazing knee recoveries
 

Tykey

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Hi Juliette, I'm always pragmatic. You are 54, assuming your new knee will last 25 years, you will be 80 by then. A lot can, and probably will, change in your circumstances by then. I'm 73, and life looks a lot different from when I was 54 That's been my experience, a heart attack, cancer, and a dangerous head op teaches you a lot
I can't make a decision for you, we all have different outlooks on life, but I know I'd want to get as much out of my life as I could.
On the other hand you never know how even a straightforward tkr will be.
Maybe a bird in the hand is worth two in the bush
Good luck with whatever you decide.
 
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Carmencita

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Hi @LondonJuliette

Just read your post - I’ve had knee problems since a teenager and held off having a replacement until just over 4 weeks ago. I’m older than you at 61, but I went through all the indecision you are going through now. I’m not at the stage where I can say “yes I’m so glad I had this done”, it’s a tough ride. But I do feel very hopeful that any discomfort I have now is on a road to mending, not constant worrying about when my knee is going to “kick off” again. Like you I think I had got used to limitations and a certain amount of discomfort but still was able to function fairly well. In the end I decided my knee was bit by bit, closing down all the stuff I want to do and I would rather live for now, then worry about a revision later!

All I can say is that you’re not alone with the “shall I, shan’t I”, but have a browse around here to realise you’re not alone! Have a read through my pre and post op posts and you will see the similarities. I’m a swimmer too.

Good luck, whatever you decide.
 

Roy Gardiner

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I’m clearly resisting doing what needs to be done
My logical brain says just do it. My emotional reaction is to run and hide!
We were all there, I think. I was a wreck. Here's some of the conclusions that helped me.

- if your knees rule your life , it's time
- take charge, don't be dictated to; it's your knee, your future
- don't believe in either horror stories or miraculous recoveries that happened to 'a friend of a friend'
- there is no such thing as too young or too heavy or even obese for TKR
- choose a specialist surgeon who does several hundred TKRs a year. Ask the nurses, if you can; they know who's best
- all replacement knees are very similar, don't believe that a special new one will give magical recovery -- it's the skill of the surgeon that counts
- if you need two done, think carefully about the time gap between surgeries, it's not a trivial decision
- try to plan for at least 12 weeks off work
- your recovery is your time to be selfish and idle; plan to embrace this, you'll need it
- don't think you can work hard (even if you're an athlete ) to speed recovery, healing works at its own pace
- look at our FAQ (Frequently Asked Questions) thread and for full reference the Library index.

- finally, if there's any part of this that you aren't clear about, ask here; it's what BoneSmart's for.

while he could give me a greater range of movement, my tissues would fight against it and it would be up to me as to how much I was prepared to fight for the gains and maintain them.
Yes, but slightly misleading. Doctors are not recovery specialists, generally.

Your muscles, ligaments and tendons have, over many years, adapted to a limited, restricted range of motion. TKR removes the physical restrictions. You then have to spend time doing stretching exercises, every day, to change the adaptations. Your body resists, and it has to be done correctly - BoneSmart can help, and your physiotherapist will too. You may also have to practice posture and how to walk. PT may help here too. It takes time, but it is not, indeed must not, be painful.
 
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Celle

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Logically I know my movements are restricted, I’m rarely pain free, and the weight I transfer to my ‘good’ side is causing issues, mild arthritis etc.
Disability from arthritis sneaks up on you and you make accommodations with your life and with how your mobility decreases. Your life is already compromised. Why wait any longer? Have the surgery and then get on with living a full life again.
Have I put up with my knee for so long that I am deluding myself about the pain I currently suffer?
Almost certainly Yes.
Any suggestions on how I go forward- or do I just wait and see if the day comes when I really decide enough is enough? i could be literally dragging myself around by then!
Go ahead an get the surgery done.
She suggested that I’m still too young (ideally) at 54 as I’m likely to need 1-2 revisions in my lifetime, but it’s time and she’s operated on many younger patients.
You are not too young.
We've had people here on BoneSmart who have had knees replaced in their 20s, 30s, 40s, 50s and even in their teens.

Knee replacements can last for 30 years or so now, so you may never even need one revision. And even if you need a revision some time in the future, would it be worth all the active life you can regain after recovery, if you have the surgery now?

Don't trade current quality of life now for some potential surgery 30 years in the future.

These are the only ways in which you're "too young":
  • You are too young to be living your life in constant pain.
  • You are too young to have your mobility so badly compromised.
  • You are too young to be giving up the lifestyle you enjoy.
  • You are too young feel so old.
 
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LondonJuliette

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Thank you all for taking the time to reply, for your warmth and your honesty. There’s a fairly consistent message here, that my knee is determining how I live my life. And it’s limiting it in ways it shouldn’t at my age. Back to reading more posts, but I feel more positive about it already. So glad I found this site.
 

Sara61

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Bit like you, I differed about should I or shouldn't I have the surgery, at 58 was I too young, how long would it last etc etc., but in 2019 I decided to go ahead and I can honestly say it was the best decision I ever made, so much so I'm back on the waiting list to have my other knee done too xx
 

FCBayern

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Hobbling along for too long on my bad knee ended up causing me to need a hip replacement as well due to the wear from an abnormal walk @LondonJuliette. One of several reasons I wish I had my TKR sooner.
 

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