Making the final decision for TKR - question

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lunula

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Hello all. I had a question for those of you who've had your surgeries and those who have set your dates.

I'm still struggling with making the final decision to go ahead with bilateral TKR. For a long time, I thought it was just nervousness about the surgery and recovery, but I've come to realize that I'm more concerned about having it done "too soon." I know only I can make the decision, my OS told me 7 years ago that I needed it and that we'll schedule as soon as I'm ready. I asked him once how my knees compare in relation to others who've had the surgery and he said I was right in the middle...many are much worse, many are much better.

I've read a lot of the pain scales posted on BS and taken the quizzes - I often score quite low. I am able to do a lot of the activities listed on those scales quite easily, and I can do all of them - just that some are painful or scary (b/c I can feel my knees bending the wrong ways!). I think because I had my first injury just before I turned 16 (27 years ago) - and 3 more cartilage tears after that (all before I was 30) - and 1 knee surgery @ 26 - I've just learned to deal with the pain and issues. I do not remember a life without knee pain and issues. I cannot comprehend being able to walk straight downstairs. Or to kneel for longer than 2 seconds. Or to be able to exercise, or take a long walk, and not have my knees swell up (even after icing them). Or to bend my knees and not hear & feel cracking and grinding. I literally cringe when I see someone jumping off of something, or making a quick turn while running - because I know if I did it, I would likely rip one of my knees apart again.

Again, I know none of you can make this decision for me, nor do I want you to. I have had 2 major surgeries already (not quite this major) and 2 other minor surgeries - and I'm not concerned about "dying on the table" or anything. I completely trust my OS and his staff. My quality of life is good, though I honestly don't know any better because I've lived with pain and compensation for so long, it's just part of my life. I can't do some things, and I have to reject things I'd like to do because of my knees - but I am still completely independent.

For those of you who were still ambulatory and able to "do things" - was there a deciding moment for you?
 
Speaking from a hip replacement perspective - I waited far too long for the first one. If your life has narrowed to the point where there are mobility issues - it's time. Planning your life around pain - no reason for it. The longer you wait the longer the recovery. I am now 6 weeks away from hip number 2. Some would say I am still very mobile. But why suffer at all? Life is just too short!
 
Thanks @Jaycey! Yes, yes - good perspective. I keep hearing people tell me that I "won't believe" how much better I'll feel after recovery and I just can't wrap my head around it. I know I'll need to be cautious, but I'm already so cautious that I can't see that as an issue!
 
Hi, @lunula ! I had a few factors-- i was (and still am) tired of calculating what my limits are-- i.e. Can I walk that far? Is the trip to the store/mall/friend's place going to be worth the pain? Next, i figured, that the better shape they are going in to the op, the better shape they'll be coming out. also, they ain't getting any better!

So, i had it done. Unfortunately, it hasn't worked out as well as I hoped, and a revision is on the horizon. But i had some glimpses of a normal life, so i'm ok with the second surgery.

Good luck in your decision. Visit the recovery area pages-- there are lots of success stories there!
 
@lunula I feel the same as you a lot of the time I think I have minimal pain but like you I have lived in pain a long time and my pain tolerance has increased, I think. Some things are impossible for me, and I avoid doing them. Since I avoid doing things I know will cause me pain, maybe it's difficult to judge how bad it really is now.
All the things you list off that you wish you could do should tell you a lot. I think why should we wait to live our lives pain free!


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@lunula, yes you are the only one who can make the decision for you. Are you content with your level of pain and what activities you can do pain-free? Do you find yourself saying "no" to doing things because you know it will be painful? Would you like to be able to go to the grocery store and not worry that your parking spot will be far from the door? In my case, my knees were hurting enough to make me limp....which in turn started bothering my hip and ankles. Since I had my knees done last summer, I can do whatever I like without having to give it a second thought. My hip and ankle pain disappeared as well. It sounds to me like you are so used to the pain, you can't imaging how wonderful a pain-free life can be! Good luck making your decision. If you decide to go ahead, be sure to read everything you can about the surgery and recovery so you will be as prepared as you can be.


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If you could wave a magic wand and have it done instantly with no recovery challenge, would you?

If 'yes', are you prepared to put your life on hold for three months?

If 'yes', are you willing to run the small risk of BTKR not being an improvement?

These are the kind of questions I asked myself.
 
I'm an "old broad" compared to the rest of you and there are times that I wish I hadn't put it off when given the opportunity to have them done over 3 years ago. That's 3 years of not being able to walk on the beach, to walk any great distance at all or stand for any length of time without a knee shifting or freezing.

Like everyone else has suggested - you're the one that has to decide whether you are ready for the surgery. Think also, about your quality of life if you don't have them done. For me - it's not just the pain but the limitations that bad knees have put on my life. Unfortunately, they don't get better with time :-(

Good luck with your decision, it's not an easy one.
 
've read a lot of the pain scales posted on BS and taken the quizzes - I often score quite low. I am able to do a lot of the activities listed on those scales quite easily, and I can do all of them - just that some are painful or scary (b/c I can feel my knees bending the wrong ways!). I think because I had my first injury just before I turned 16 (27 years ago) - and 3 more cartilage tears after that (all before I was 30) - and 1 knee surgery @ 26 - I've just learned to deal with the pain and issues. I do not remember a life without knee pain and issues. I cannot comprehend being able to walk straight downstairs. Or to kneel for longer than 2 seconds. Or to be able to exercise, or take a long walk, and not have my knees swell up (even after icing them). Or to bend my knees and not hear & feel cracking and grinding. I literally cringe when I see someone jumping off of something, or making a quick turn while running - because I know if I did it, I would likely rip one of my knees apart again.
I think this is the key part of what you've said. I too had lousy knees for many years and mostly was compensating and coping. But things were getting worse and I now had the option of tkr. I can tell you that instead of creaking and crackling my knee of 10? weeks is quiet, stable and on the right track. Could I have waited longer? Possibly. But I know I waited too long for knee #1. I didn't wait until I couldn't function for this knee and I think that helped my recovery.
 
Thank you all so very much for the insights - honestly, it is very helpful!!


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My OS kinda just said I think it's time. My family doctor thought it was to soon. I really got mixed signals. I will not lie - this is the hardest thing I have ever done. I'm only 3 1/2 weeks out of surgery and I'm still in pain, but I know I am going to be so happy very soon.

The good news the decision you make will be the right one for you. Good luck.
 
@lunula, for me it is a quality of life question. I would have done this years ago if I knew it was an option. I thought I was just an isolated case of pain from being bowlegged. I'm tired of not being able to stand still for more than a few minutes, having to decide which activities to cancel or put off b/c I know my knees will only take so much per day, telling my kids to slow down b/c I can't walk as fast as them, not being able to walk the dogs for more than a block, etc. I want the life I had years ago when my joints worked well. My life has dramatically improved since my THR in May, and I'm hoping for more dramatic improvement after my bilateral TKR in November. Best wishes for your decision and recovery!
 
@lunula
It is such a personal decision and a difficult one for many of us.
Whatever you decide, I wish you the best of everything life has to offer. :)
 
I was told 30+ years ago that I'd need a knee replacement one day and that I should hold off as long as possible. I'm modified my life, I haven't been to ride a bike for decades, I have become more knock-kneed over time and worried that when I was finally ready for the surgery, they wouldn't be able to fix it and I'd be that slightly scary and very sad little old lady with a cane and horribly disfigured legs. Despite having excellent balance I've had a few falls in the last few years. At 50 I thought I was over skinned knees. I worked a full-time job and could walk miles without my knee limiting me - it would ache like an person that night and I'd have a slight limp the next day but hey - I could get by!! When I slept at night, I'd dangle my bad leg off the edge of the bed, it didn't feel good straight. Had to lead up stairs with my good leg, had to lead downstairs with my bad leg, couldn't kneel down to weed the garden...

Then I realized that's way too many rules for living with my knee. If it was a piece of equipment it would require an insanely complicated user's manual.

I think the scale you need to use is this: will the doctor do the operation? Yes? Then it's time. If he wouldn't consider it, then it wouldn't be time yet.
 
@Roy Gardiner, @dovemck, @1ELISEA, @PuppyLove, @mjkpek, @kneeper, @Threads, @Lovestoread, @amber777, @LondonLady, @Jaycey -- From the bottom of my heart, thank you all!

The other surgeries I had were not "optional" so I never questioned those decisions. Since my last Syn-Visc injections didn't do anything to alleviate my pain, and these were my "last resort" after rehab, pain killers, arthroscopic surgery, diet/exercise, losing weight and cortisone injections - I know I'll only continue getting slowly worse. Of course, I still am worried about what @Roy Gardiner brought up (being worse off after surgery) - but hopefully I can lessen those risks by getting in better shape before surgery, following instructions to the letter (including the BoneSmart mantras!) and committing myself to my rehab and care afterwards.

I guess anyone going through an "optional" surgery deals with this...how the heck do people go through with major plastic surgery?!?! :flabber:
 
I have a similar knee history to yours -- torn meniscus at age 16 and 50 years of knee pain issues; "primitive" surgery in 1981, and final straw when I broke the tibial plateau about 10 years ago. The bone did not heal correctly so I ended up with a severe leg deformity. However, I never had the level of pain that you have lived with and I was able to continue walking for exercise up to the day before surgery. So I was able to wait, as my OS suggested, until age 66 and had the RTKR last March. My OS kept telling me that I should wait until the pain and loss of mobility hampered my daily life. It sounds as if you are already there, and have been for many years. If I were in your shoes, I'd go for it now. Life is risky and you never know how long you have so why suffer the constant pain when there are ways to make it better?
 
TKR is, along with hip replacement, the commonest serious surgical procedure in the world. The chances of being worse off are pretty small indeed as it's such a well understood operation.

I mentioned it in contrast to the preceding two questions -- it was certain in my case that I was humming and hawing just in fear of the surgery itself, not in fear of recovery; recovery is a challenge but for almost everyone the result is hugely to the good. I am a zillion times better now than three years ago.
 
but I've come to realize that I'm more concerned about having it done "too soon."
I cannot begin to tell you the number of folks on this forum, after a TKR or a BTKR, who, after they have recovered, have written, "Why did I wait so long?"

ust that some are painful or scary (b/c I can feel my knees bending the wrong ways!).
It sounds like what is dysfunctional has become functional and normal. Are one's knees supposed to do that? We all have put up with these issues---but is that what we are supposed to do?

I do not remember a life without knee pain and issues.
I cannot comprehend being able to walk straight downstairs.
After your BTKR, you will be amazed at what yo can do and how easy things come in terms of activity---the normalcy will return.

can't do some things, and I have to reject things I'd like to do because of my knees -
Please read what you have written---I think that, deep down inside, you know that it is time.

I had a BTKR going on seven years ago this November---and, while, at times, I could be in a great deal of pain (at night, when I rolled over in bed), I was still capable of doing day-to-day activities---but some of the activities---such as umpiring and others---were coming to a screeching halt. I can tell you that I was ready to get the BTKR done a little sooner rather than later.

After my BTKR, I was able to umpire my first HS game the first week of April, and things kept getting better.

Life is so much better now, and I believe, that, if you pursue the BTKR, you will see how much more enjoyable "normal" is and that these limitations placed on yourself by your knees will be history.
 
@lunula, I just read your thread. I had my RTKR back in December 2012. That knee was severely knock-kneed. In addition to the pain, swelling, not being able to do certain things and the doctor telling me that a few more degrees and the knee would just give out, I decided to go ahead with the surgery. I had a good recovery and when exercising with my trainer I could see more and more that my left knee was getting worse and causing pain. But it was nothing compared to the right knee and at times I had no pain and could just about do anything I wanted. I really questioned whether or not I should have the surgery. Like you I took the test and didn't score that high. Another factor was that I will be losing my health care coverage at the end of the year and with going on Obamacare, my monthly payment is almost double and the deductible goes from $2500 to $6300. I mentioned this to my OS and he said that while I might be able to wait a little longer for surgery, I certainly couldn't wait over two years before I would go on a Medicare and that he would work with me if I wanted to get it done before the end of the year. I went back and forth in my mind whether or not I should have it done. Sure, I have pain when I do certain exercises or walking on uneven surfaces and the pain seems to be increasing, but it was not chronic pain like the right knee. Also even though I had a good outcome with my right knee, there are still certain things I cannot do at the gym because of range of motion and sometimes I would secretly question whether the right knee was really all that successful.
I finally decided that I was just going to bite the bullet and have it done. I knew down the road it has to be done so I might as well get it done now. Plus my husband kept telling me that I needed to get it done. He said I didn't realize how it did limit me at times. Well, I will be three weeks post surgery this Friday and I am so glad that I decided to go ahead. Now don't get me wrong. Monday was a very bad day for me and I questioned myself, but all in all I am happy about it. And the right knee....the one I wondered at times if it was a successful surgery. Well when I am getting up from a seated position, or from going to the bathroom, I put all my weight on my right knee and it is as solid as a rock. This is showing me that it is working fine and in time my left knee will be doing the same.
No one can tell you when it is the right time, but you. I hope this helps. Take care. Anne
 
@lunula I know you will make the right decision for you! If having a BTKR had been a choice for me I would have done it. It would have been much harder at first but I could have recovered once instead of twice but my OS does not do that.
Sounds like you have kids, me too and I was tired of not being able to do things with them that we wanted to do! Things as a family, simple things like go for a walk were so painful for me. Taking the kids to a theme park or the zoo was to torture.
I am almost 5 weeks out now and it's getting better all the time... Not as fast as I would like but I'm impatient.
Good luck it will all work out for you! My OS used to talk me out of doing it, for about five years he did that. He would say if he can talk me out of it then I was not ready. Then one day he couldn't talk me out of it anymore.
Take care
Trish
 
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