Need help in TKR decision

[jenzbill]

I have had 8 surgeries already on my L knee. My ortho. dr says it is in very bad shape & in need of a TKR but is concerned b/c of my age of 34, not b/c of wear but b/c of patients my age continuing to have pain after surgery. He has requested that I try to find out how others younger than 40 have faired with their TKR and then let him know at my follow-up in a month of what I've learned & my decision. I am not a candidate for a partial, injectables have been tried w/ no success(both cortisone & synvisc), oral meds that I have been on have either been taken off the market, I'm allergic to or don't work. I am trying a new med than before, to see if it will help some. My knee gives out both w/ & w/o warning, it grinds terribly & can even be heard at times, it locks up & can't be straightened, especially when sleeping or sitting, pain ranges from aches to sharp & seems to be there on a regular basis in some form. I would appreciate hearing from anyone that has had a TKR and willing to share their experience, both positive or negative. I would also like to hear from any ortho drs and what they may suggest, as I've been told that 9 out of 10 drs would blow me off & not want to help me despite how bad my knee is b/c of my age. Thanks so much, Jen

 

[Nursepair]

Hi Jen and welcome. Sounds to me as if you need a TKR for sure. Young or not, why should you have to endure that kind of pain until you are in your 50's. You have a life to live and your surgeon should consider that. The replacements now are supposed to last about 20-25 years before needing to be replaced.

Have you read back to our older threads? There is a lot of info about what it is like. It is a long recovery for some, shorter for others. What we do all agree on though is that it is wonderful to be pain free in our new knees.

I am sure our moderator and ex ortho nurse Josephine, from UK, will be along soon to comment and advise. She is 5 hours or so ahead of us (depending which part of the US you live in.) Sue

 

[JenniferG]

Hi Jen, I'm Jen (really). I had Bi-lateral TKR on March 18th, both knees 7 and a half weeks ago. On March 20th I turned 40. Spent my birthday in the hospital. Having my knees done was the best birthday gift ever! I suffered from all the symptoms you described in some degree and had got to a point where the pain was so bad I could do nothing but sit on the couch. Sleeping was bad, standing was bad and well as walking. The pain and degeneration in the knees is progressive. It only gets worse. I agree with what sue said. To spend the next 20 years in that amount of pain waiting to get "old enough" is unecessary. I understand that there is a higher possibility of the need for a revision in the future, but i also know that between now and (maybe) then I have plenty of life to live not in pain and not on my couch. I also have been blessed with a very quick and good recovery. I attribute that to many things, one of which I think is my youth. i would absolutely do this again. Many doctors are hesitant when it comes to younger patients and even overweight ones. I think (hope) that tide may be changing. They need to be conservative because once they take out your real knees, they are gone, forever. They want you to truly realize it is the point of no return, it is major surgery. If you are there then it may be time. I woulld have LOST MY MIND if i had to go another 6 months with the pain I was in, never mind years. Today I walk for therapy, exercise and fun, I shop, I garden, I clean my house, I stand and talk with people, I park the car wherever, I don't grunt and whimper with every bump and turn while riding, I attend functions and outings, I cook and bake, I sleep better, I get dressed without pain and put on my own socks, I run errands, I visit friends... You get the idea. If you decide it is what you want to do and your current DR won't see another. And keep trying til you find one. They are out there. There are other considerations when picking a OS like experience and quantity of specifically with your need (knees). Keep posting and reading. There is lots of info that you are looking for here on this forum. Let us know if you have any other ?'s.

 

[Josephine]

Little to add here ...

There is some (limited) evidence that younger patients have more problems but not having delved into it, really cannot comment. My sister (75) has bad pain since her two knees were done but they are now considering it might be due to a serious spinal condition rather than her knees. She says that whatever the cause, at least she can now walk her dog (and she out-walks me any day of the week and twice on Sundays!) without that awful griding pain she used to get.

Sadly, no-one else can make the choice for you - you need to come to a point where you are prepared to gamble on being one of the great percentage of people who have no problems afterwards. That is a considerable number of people. The odds are much in your favour.

 

[jenzbill]

Thank you all for the great info & advice. While I can say that I am not to the extreme that y'all & others seem to be, it is interferring w/ my quality of life. My trainer/physical therapist cringes when we do leg work b/c of the grinding. I have 2 toddlers & have come close to dropping them b/c of the giving out. I scared my 4 yr old the other day when I screamed while trying to kiss her goodnight, b/c of how badly it hurt when it gave out w/o notice. I am a military wife & end up being the one taking care of everything by myself more & more, so having legs that don't work, when you're not used to it, is not really an option. I have been dealing with this for 20 yrs already & it's very frustrating. I do have problems with my R knee due to having all my weight on it for all these yrs & have problems w/ my back/hips b/c of how I walk. I have no doubt that later in life I will need other work done on these areas, but I really feel that this needs to be done now. While it is my decision, I applaud the dr for trying to get me to do the research. He has done over 600 knee replacements & has not said he won't do it, he just wants me to be sure. Also, being a military spouse w/ no other insurance, finding another dr outside of the military is not necessarily an easy thing to do. I am trying to do what is asked, but from what I've learned abt the procedure, how bad my leg is, & how determined I am to feel better than I do, my family & I do not think I'll make it another 10-15 yrs. I am reading some of the older threads to see what I can find & I have to say I truly like seeing the support & hope that is offered here. Thanks so much, Jen

 

[JenniferG]

Just another thought: my experience has been and i've read of others, that when the knee is to the point of needing TKR , people who continue to "go" on the knee, just do further damage and the progression makes the recovery later harder. Muscles continue to not be used and weaken or atrophy, bones continue to compound on each other, other joints become stressed from compensating etc.
Jen, please know i thought to post this before I read your last one. please don't think I am trying to talk or scare you into anything. I needed TKR at least a couple years before i did it. Not only does it have to be physically bad enough, I had to be emotionally ready. One year ago I couldn't do it. This year, the pain was greater than the reasons not to. Best to you as you research and decide.

 

[hess]

Jen,

I am 39, 40 in October. I too have had knee problems for over 20 years. I have 3 sons, 11,9, and 6. My left leg is shot, and my right is not too far behind. I have been struggling to find the right doctor for me, but finally this morning, my husband and I found a doctor that we were both comfortable with. He's doing the TKR on June 9, and as far as I am concerned, it is not a moment too soon! I am scared to death, but relieved that my arthritic pain will be gone! I can't even imagine!! We have not yet worked out the logistics of schedules, etc., but that will work itself out! For now, I just have to worry about myself. If your quality of life is bad enough that you are willing to go to any extreme, then maybe it is time! Good luck to you. I have found much comfort here, and I hope that you revisit often and get the same degree of comfort.

Hess

 

[jenzbill]

hess, I spent some free time reading the threads abt your situation today and it has been very interesting & helpful. I do find it funny b/c I will be getting a 2nd opinion from another military dr that works w/ my OS, at his request, on 6/9. Everthing that I have read & is being shared with me I am telling my husband & he is quite intrigued. I now have more questions to ask my dr. I was hoping to get mine done in July, between my husband's deployments, but instead, we are going to see if they will do yet another scope to help ease some of the problems until the 1st of the yr when my husband is off primary deployment status, that way he can help, as I will need it no matter how much I think I can do it all on my own. Thank you so much for sharing & I wish you the best of luck, Jen

 

[Rowdy66]

I Am Sorry But I Am A Mite Confused About Something. Before They Put That Little Plastic Piece In The "new Knee" I Could Understand The Hesitation About A Person Younger Having Tkr, Then The Whole Thing Had To Be Replaced. Which Was A Lot Of Work And Another Long, Hard Surgery. Now, Though, They Only Have To Pop The Little Plastic Piece(s) Out And Pop New Ones In, Not Such A Big Surgery And Much Easier On The Patient. So Why Can't Younger People Now Have Tkr Without The Concern They Will Be Having To Do The Whole Thing In 15-20 Years And Possibly Without As Good A Result. Could It Be That They Just Got So Used To Not Doing The Surgery On Younger People That They Forgot How Improved Things Are Or Is There Another Underlying Concern That We Aren't Aware Of? I Know I Sure Would Hate To Be New Jennifer's Age With Little Ones To Chase And A Hubby In The Military Going, Possibly, All Over The Globe To Protect Us With Two Bum Knees And In Pain All The Time. I Don't See How These Younger People Are Doing It To Be Honest. If It Were Me I Would Be Fighting To Get New Knees So I Could Get My Kiddies Raised Without Me Being In Pain. Rowdy

 

[hess]

Actually Rowdy, that is exactly what the doctor said to me today. He said that I should get it taken care of now, improve my quality of life, and when the little plastic piece needs to be replaced in 20 years, it is a much simpler surgery. Jen, I just had to keep searching until I found a doc who is willing to work on young people. Don't give up!! Again, good luck to you!!!
Hess

 

[grannynanc]

I just had a revision 5 weeks ago which was 3+ years after my original RTKR at age 51. They removed all the components and gave me shiny new ones, not just the plastic spacer. I guess what they replace depends on why they have to do the revision.
Nancy.

 

[JenniferG]

Hess, good doctor you've got there.
Jen, Thank your husband for serving.

 

[Josephine]

I just had a revision 5 weeks ago which was 3+ years after my original RTKR at age 51. They removed all the components and gave me shiny new ones, not just the plastic spacer. I guess what they replace depends on why they have to do the revision.
Nancy.

Also depends upon the prosthesis you had in, grannymac. If it wasn't available anymore or had been found wanting, then perhaps it wasn't possible to get a replacement.

Just for a by-the-way, I have rarely seen the tibial (plastic) insert replaced. In my experience it has always been the entire unit.