Can I push for Knee Replacement?

GemLou84

I'm at my wits end now. I've had knee problems for as long as I can remember (they started dislocating when I was 11 and I'm now 39). I've consistently been told "you're too young for a knee replacement" and have had 6 less major surgeries to try and deal with it on the right knee (TTO, MPFL, LR, Arthroscopy flush outs). My left knee is still dislocating on a fairly regular basis, they tell me the arthritis is at grade 4 on my right knee but is concentrated mainly on my patella. I've been on a cocktail of pain relief for the past 15 years or so which is now causing various other problems. My consultant discussed with me previously that we maybe consider the risks and benefits of prolonging the inevitable and do we just call it quits now, do the replacement acknowledging that it will need revision in a few years but at least I am likely to get some pain relief and walk normally again. He now wants to refer me to a doctor in London but I've been told the waiting list for this is over a year! I've missed out on so much already (I'm a single mum and starting my nursing career is on hold) Can I tell my consultant that I want to just push ahead with having the replacement done so I can get my life back? I am focused on my physio, eating well and trying to exercise as much as I can so I'm trying my hardest to help myself with this.

Sorry to ramble but I really am at the point where it's damaging me in so many more ways than just the knee pain.

Any advice very gratefully received.

frogmorton

Hi @GemLou84

Gosh you are stuck between a rock and a hard place aren't you?

I have been here with my own daughter who had her shoulder replaced 5 years ago at the age of 19. What a huge decision to that was. She was so young to understand the consequences, but in agony. Her shoulder had collapsed and we could barely wash her armpit.

Still I knew that she was potentially (well certainly) facing a lifetime of revisions. Each one getting possibly harder to carry out and maybe less successful.

I'm sure you know all of this already yourself knees aren't the easiest joint for revisions, but it's up to you. Talk to the family and think of the longer term. I'm sure you're also feeling like the best years of your life are being taken away from you right now though.

Do let us know what you decide to do and we'll be here right behind you

Toni 🤞

helpline_team

Hi @GemLou84

Thank you for posting on our Online Community, please do not apologise you are not rambling, it must be so difficult especially when you have had to cope with this for so long, you probably feel that your life is on hold.

For 80-90% of people a Total Knee replacement can last for 20 years and often last longer, so depending on the age of the person a revision may need to be done in the future so a GP may not advice on it for this reason , but if you feel that the operation will give you a better quality of life then there is no reason why you cannot have this conversation with your GP.

Hope everything goes well in the future we are here if you need us for further support.

https://www.versusarthritis.org/about-arthritis/treatments/surgery/knee-replacement-surgery/

Best wishes

Chris

Helpline Advisor

stickywicket

I'm just an ordinary forum member with two TKRs, one of which is a revision. Thet were first done when I was 31, with two young sons, and one revised but the other not capable of revision. I don't regret any of it but here's what I'd want to know in your situation.

Why does your surgeon want to refer you to London? Is it because he feels they'd do a better job? I know that not all ortho surgeons are qualified to do revisions. Maybe he feels that, after so many knee operations, your TKR(s?) would be complicated.

Also, if the arthritis is ' concentrated mainly on my patella' that's unusual. The patella is normally left in place after a TKR. I still have both mine. I'd want to explore with him what difference(s) this might make to the op and the aftermath..

I know you've been through a lot and want a spot of 'normality' but, personally, I'd always wait for my best option and I'd certainly want to know pros and cons from my surgeon.

Good luck with whatever you decide.

GemLou84

Update - I saw my consultant last night and discussed my frustration with him. He wants me to go to London because my knee is a bit more complicated with the majority of the damage to the kneecap, he says that the doctor in London is the best he can send me to in our area and is very experienced with partial replacements and other management of this type of problem. He is hopeful that he will also look at my other knee since the dislocations are becoming much more frequent with it so he wants to try and avoid further damage to that one. I'll just have to wait it out to see him.

Last night the consultant did give me a Monovisc injection in my right knee in the hope that this will manage the pain a bit for me. I've only had steroid injections before not the hyalauronic acid one so keeping fingers crossed that this will help, a lot of the testimonials from people are certainly positive.

Thank you everyone for the encouragement and advice.

crinkly

This may not be particularly helpful but I'm just adding a comment that patella involvement is not uncommon and can only be effectively treated by TKR during which the osteophytes are also removed. Although I don't fully understand the surgical mechanics this was explained to me by an orthopaedic consultant following x-rays of my own knees many years ago - when I was around your age. Thankfully I didn't have the complications of frequent dislocation but had also had minor knee problems from childhood. (I was told me that, at the time, this patellar OA was not an acceptable reason for performing a TKR but things may well have changed by now along with increased longevity of replacements.)

In OA osteophytes frequently grow as the body's protection of damaged joints - hence the lumps and bumps (nodes) on finger joints. When these develop behind the patella they inevitably impinge on the knee joint, causing pain and reducing mobility.

If my most active years were not behind me and if I had undergone as many unsuccessful procedures as you have done I would definitely explore the possibility of TKR and make a decision based on current quality of life.

You need to be comfortably mobile now. Your situation will be different in 20 years' time and you can't know what that will be like or what the future holds for prosthetics so planning for many years ahead seems little more than a stab in the dark. If you leave things as they are do you think you may regret that at a later stage?

It sounds as as though you have the support of your Consultant, whatever decision you make and you have nothing to lose by following his suggestion of seeing a London specialist to help address the added complications of your dislocating joints. The sooner you are on that waiting list, the better and there may be a chance of making yourself available for any short-notice cancellation. You can always step off the list if another option crops up or you decide on surgery, but the longer you delay in being added, the longer your wait will be.

I do hope you are soon more confident about the best way ahead for you, your family and your ambitions and that you find ways of coping during the time you wait.