KNEE ARTHRITIS - Total Knee Replacement :
TKR-still pain after 1 year - - Posted by auntiedonna (auntiedonna), 30 December 2004
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Had TKR on right knee on Jan. 6, 2004. Have full ROM, and get around O.K., but have pain every day. Trouble sleeping, can't stand for more than 15 mins. without pain. Can't walk very far either.
Have been back to the OS four times - he just gives me more pain meds & says everything looks fine. Was on Neurontin for the past 3 months - helped me sleep, but no help during the day. Have an appt. next week with an OS outside of my HMO (kaiser). Will bring my X-rays & hope he has some answers for me.
It's so frustrating when everyone else who has this surgery brags about how wonderfully it went & how good they feel. I have more pain now than I had before the surgery ! Sucks ! I am a 59 year old woman living in No. California. Would like to hear from others with similar outcome.
Posted by Jan_L. (Jan_L.), 30 December 2004
Hello Auntie Donna,
There are several of us here that have had less than favorable outcomes following a TKR. I had a TKR last Dec and have been in severe pain ever since. It's good that you are going for a second opinion.
There are several things that can cause pain. Has your doctor done bloodwork, SED rate and CRP (C-Reactive Protien), to check for an infection? It's possible to have an infection with pain as the only symptom.
What type of implant did you have put in? Was it cemented in, ( some versions don't require cement)? Some times the implants can come loose.
It's also possible for the implant to have been put in incorrectly. Have they done a CT scan? Which would show if the implant was malrotated.
It's also possible that the implant is the wrong size.
Only your doctor will be able to tell you why you are in pain. I suggest you request blood work and a CT scan if that hasn't been done recently.
Good luck. It's awful to go through this surgery and end up in a lot more pain, which is what happened to me also.
Hang in there!
Jan
Posted by auntiedonna (auntiedonna), 30 December 2004
Jan: You can't know what it means to me to know that I'm not alone with this outcome from my TKR. Everyone I come in contact with goes on and on about how wonderful it is ! They almost have the attitude of, "What's wrong with you ?"
I have had recent bloodwork, it was fine. I have a cemented prosthesis - it's a DePuy Sigma model. I have not had a CT scan, but will suggest that to the second opinion doctor.
What have you done about your pain ? What is your plan now ?
How old are you ? Where do you live ? I see that this Knee Guru site is a UK based one.
Posted by Jan_L. (Jan_L.), 30 December 2004
Hi Auntie Donna,
I am 48 years old and live in the Detroit, Michigan area. I have been on a great deal of pain medication continuously since my surgery. My interinst has been wonderful about keeping my pain under control so that I am comfortable. My knee doesn't bend, so they knew something was wrong from the beginning.
I know you had blood work, but you need to find out if they checked for those two things I mentioned (SED rate and CRP (C-Reactive Protien), it's very important. A lot of doctors don't check for it, they just check the white cell count. I learned this when my mother had a total hip replacement and it became infected.
99% of all TKR go off without any problems, it's awful when you're in the 1% that didn't have a good outcome.
I have spent quite a bit of time online learning about what can go wrong and then trying to find a doctor that can deal with this. I found a doctor that limits his practice to hip and knee replacement and NOTHING else. This is all he does and he knows knee replacements. So that's my first suggestion to you find a specialist in knee replacement. Any knee doctor can do a TKR but when things go wrong it's time for a specialist!
I am scheduled for a full revision on March 18th.
There's also another web site for people with knee replacements, it's "on our feet joint replacement forum - Robin's knee replacement".
http://forums.delphiforums.com/onourfeet/messages
You are not alone, you can get a lot of emotional support here (and the other web site) which is wonderful for those of us in the dreaded 1% of failed knee replacement club.
Hang in there, I know it's awful.
Jan
Posted by Lori-Florida (Lori-Florida), 1 January 2005
I am a victim of failed knee replacement and also revison. You can read up on me on the crisis board under trying to save my leg from MRSA ... If there is anything that I can help you two girls with from my experience just ask. Yes Donna your SED rate and CRP (C-Reactive Protien) is very important to watch regularly when your having any pain or swelling or redness or heat after a knee replacement. Infection is a number one cause of failure. and It is basically played down . MRSA is on the climb in hospitals and is the superbug just waiting to attack and cleanliness is a main cause . Hand washing and sterile situations. Then it totally changes your life forever and May even take your life, Feel free to email me at anytime if you dont want to post online. Lori from florida
Posted by auntiedonna (auntiedonna), 2 January 2005
Lori: Yours is a heartbreaking story & sounds like the saga is not over yet.
Yes, I have been tested for the blood factors you mentioned. I am clear in that area. I do not have swelling, redness, etc. just pain. I keep thinking it is some kind of nerve thing. After 10-15 mins. on my feet, I have to sit down. Sleeping is the worst. Absolutely cannot get my knee in a painless position. Have tried stuffing pillows all around the knee, got a new mattress. But it's inside the knee that's the problem.
My x-rays looks perfectly normal. On Jan. 7th, I'm going for the second opinion. It will be year on Thursday that I made the worst decision of my life - to have TKR surgery. I would give anything to have my old ratty knee back. I have more pain now than I did before. Bummer.
Posted by denverpie (denverpie), 4 January 2005
Hi Auntie Donna,
I had TKR on Aug 24, 2004. I initially seemed to get better and like you, am able to get good range of motion, can stand for 10-15 mins, and can walk for 10 mins or so before being in so much pain that I have to sit down. I too, also have a LOT of trouble sleeping. I have been on vicodin up until now which really doesn't make it stop hurting, it just makes me not care!!! 
My doc wants badly for me to get off the narcodics and I do too but I sure don't want to just be in terrible pain all the time. This is the first time I have ever used one of these forum sites but it sure makes me feel better to know that I am not the only person this is happening to. I have an appt with my OS tomorrow but I don't hold a lot of hope that he will do much. I just changed insurance coverage so when I go to meet my new PCP, I will ask for a second opinion from another OS. I am 48 yrs old and live in Denver, CO. Oh goodie....its supposed to snow 3-6 tomorrow so that will make the trip to the doc's a fun time. I will be checking to see how your situation works out. I too have a bunch of friends that all have GREAT results from the TKR. Can't believe I am the unlucky 1% and you are right, it makes me feel terrible when they all say "what is wrong with you...this is GREAT!!!" I am really at a loss on where to turn with this! Thanks for listening.
Posted by auntiedonna (auntiedonna), 5 January 2005
Hi denverpie: Oh, I'll bet you are going to be fine. It's only been a little over 4 months. I was still going to PT 2x/week at 4 months. Are you still doing PT ? Most people have pain at 4 months.
Did your doctor tell you that it often takes 10-12 months just for the swelling to disappear ? Also, many people take up to a year to have full recovery. I hope you are one of those !
My year anniversary is Thursday. It was definitely the worst decision I've ever made in my life to have the TKR.
Have you noticed that all the people with bad outcomes who have responded to me are young-ish ? The average age for TKR is 74. All of us are substantially younger than that.
Obviously we are more active than someone in their mid 70's. I can't think of any other reason that the older ones seem to always have good outcomes. Maybe it's just that they don't talk about the failures - also they may not be computer literate ? I don't know, but I find it curious.
I don't think it's out of the ordinary for you to be on vicodin at 4 months (unless you're overdoing it ?)
Please let me know what your doctor says tomorrow. . . bet he/she will tell you to just be patient !
Posted by Jan_L. (Jan_L.), 5 January 2005
Hello Auntie Donna,
Your last message reminded me of something my doctor told me, so I have started a new topic... "Are you young and have a failed TKR?" Please take a look at it and see if you fall into this category also.
You are right about there being a connection to people being young and having a failed TKR.
Something else that you might be of interest to you. My doctor also said that an implant can be put in correctly yet not fit a persons bone structure well and can cause a pain and loss of ROM. This is why I am schedule for a complete revision.
Jan
Posted by Teresa_S (Teresa_S), 5 January 2005
Auntie Donna, I , too , have had a failed tkr at age 50. I truly believe that my prosthesis is not the right one for me and this is the reason it actually broke, and I have had to have part of it replaced one year and one day later. I can't get past 90 degrees of flexion, and over the past three weeks, it is going backwards, and my whole leg shakes when I try to do PT. I'll keep an eye on this, and see how many more respondl. Teresa
Posted by denverpie (denverpie), 5 January 2005
Auntie Donne,
Thank you for the encouraging reply!!! My appt with the OS got changed from today until Thursday. I am anxious to talk with him and see what he has to say. I sure don't think I have been overdoing it with the vicodin...usually take only 1 at bedtime so I can sleep. Sure can't seem to sleep without it! Your comments about all the folks in this forum seeming to be a bit younger than the average TKR patient has caused quite a stir. I'm definitely going to check out the new topic. I had a patella femoral arthoplasty in Feb 04 which failed because the implant did not adhere to my femor. They were using the new technology implant which my bone was supposed to grow on....obviously did not work! And even worse, this all started with a torn ACL over 4 years ago. I have been in pretty much constant pain since then so I'm really getting tired of this game. Your appt is this week...right
I will be anxious to see how you do with the second opinion. Wishing you all the luck! Denverpie
Posted by denverpie (denverpie), 7 January 2005
Hey Auntie Donna,
Saw the OS today. He was very concerned about the swelling and pain that I still have. He drained my knee and send two samples off for lab. I am going on vacation...that should be a lot of fun the way it feels....but when I get back, he wants to do a CT scan. Gave me some different pain meds and something to hopefully make me sleep which would sure be a change! Hope you are doing well and will let you know how things come out in a couple weeks! Thanks for listening!
Posted by auntiedonna (auntiedonna), 7 January 2005
Dear Denverpie:
I am shocked that your doctor is doing all these things so soon. Four months is not long enough for your TKR to have healed. Why is he doing this so soon ? What does he suspect ? Just out of curiousity, what pain meds and sleep meds did he give you ? I have tried vicodin, tylenol/codeine, ultram, darvocet, nortriptylene, neurontin, celebrex. Nothing touches the pain. Hope you have better luck.
I am going to get a second opinion today, but it's been a year for me.
Hope you have a great vacation ! Where are you going ? We've had horrible weather here - so much rain. It would be wonderful to get away from it. But we have a 5 month old puppy, so can't leave her with a sitter quite yet.
Posted by Jan_L. (Jan_L.), 7 January 2005
Hi Auntie Donna,
I am taking Oxycontin and Vicodin HP fro breakthrough pain and that works great! The Oxycontin works great, it's a time released pain med that you take every 12 hours, so that you always have medication in your system. He doesn't make me feel real high, it just takes the pain away. This comes in a large range of doses, you might want to try a low does and see if that helps. Although a lot of doctors don't like to write scripts for it because it is a highly abuse drug and has a high street value. On the street people crush it and get the whole 12 hours of pain meds instantly. If taken properly , it's safe and works very well for chronic pain. My internist has been wonderful about trying to keep me comfortable while I struggle to get my knee fixed. I hope this helps.
Jan
Posted by Jan_L. (Jan_L.), 16 January 2005
Hi Auntie Donna,
I was just wondering how you are doing. If you get a chance, write and let us know of your progress. I hope you are feeling better.
Jan
Posted by Teresa_S (Teresa_S), 18 January 2005
Auntie Donna, Just reread through this post, and a thought came to mine. I was at PT last week, laying on my abdomen, and the therapist was behind me bending my foot towards the hips so that there was a good pull along the quad and the knee. I let them really push and bite my lip so as not to scream. It takes great concentration for me to bear this pain, but I want that quad to function again. I asked the therapist how do the people that are 70 and plus stand this procedure, and the pain. She told me she hadn't really thought about it but, that the ones who are 70 and older don't seem to need them to do it like the"younger ones do" SHe said either they are so flaccid or something but it is much easier to bend their knees. Then she told me she wished the next guy could see me because he really carries on and complains when she helps to bend it. She said that if he could take it she could push his foot to his butt, GOD FORBID!!! For one day, my quad softened up, no knots, spasms, etc, and almost functioned normally and the VERY NEXT DAY, it was back to where they could barely bend it , stretch it, etc, and the therapist today, said he could count 8 huge knots in the quad from the thigh to the knee level. They really massage and dig in to try and keep that mucsle loosened up and stretching, but my body fights back and knots up unfortunately. The older patients have more trouble with endurance and the bike, precor, etc. Right now they are telling me that my ankle is so unstable that they can feel my ankle and knee pop and clunk at the same time. I saw the Os today, and he ordered an ASO for the ankle. I did have an ankle fracture at the same time my knee was injured and had to have it surgically pinned. I did think it was interesting the way the PT sighted differences in the rehab though. As a nurse I have had several post op tkrs on my floor, and mostly they spend the day getting up only for rehab and it is never much more than learning to walk, and get up and down from the toliet or chair. The more elderly patients seem to also, have more immediate post op pain than continuing pain. It is a interesting subject, and I wonder where the journal articles are that compare the outcomes of the tkr at age 50 as opposed to 70.The Univ OF MO has also developed a system to align the knee prosthesis with the ankle andhip, (as nature does) with a system they compare to the car navigation systems like on star. They say this spare the femur and tibia from the instruments they put inside them to size the prosthesis, thus perhaps making multiple revisions possible in the future. They also feel their knee prosthesis should last around 30 years!Food for thought. Keep in touch, Teresa
Posted by Jan_L. (Jan_L.), 23 January 2005
Hello Auntie Donna,
How are you doing? Wht did you find out at your doctor's appointment?
Are you still having trouble sleeping? I had a lot of trouble sleeping also. A while back I got a new bed, an electric bed, which has really helped quite a bit. It's like a hospital bed, so I can sleep on my back with my knees bent. When I wake up in pain (which is often) I am able to change the bed position and I quickly fall back alseep. My knees were damaged in an auto accident, so I was able to get my auto insurance company to pay for the new bed in full, I just had to get a Rx from my doctor. Before I got my bed I also had a RX for sleep medication which also helped a great deal.
I hope you new doctor has offered you some options to help you.
Jan
Updated Sat Nov 21 2009
