TKR-still pain after 1 year

[auntiedonna]

 :-/
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.

[Jan_L.]

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

[auntiedonna]

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.

[Lori-Florida]

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

[auntiedonna]

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.

[denverpie]

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.

[auntiedonna]

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 !

[Jan_L.]

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

[Teresa_S]

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

[denverpie]

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

[denverpie]

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!

[auntiedonna]

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.

[Jan_L.]

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

[Jan_L.]

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

[Teresa_S]

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

[Jan_L.]

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

[lsusaint]

I had my TKR Dec. 7 2004, and still have severe pain. I have full range of motion, but worse pain than before the surgury. I got back to ultram for pain but had to take 2 every 3 hours without relief. I am 48 and have found lots of people that age with problems. Finally I was placed on a Duragesic patch and have mostly relief. My PT was a joke, I did most of the rehab on my own. But I did have 16 surguries on the knee before the replacement. As all of you my Doc says everything looks good, and to just give it time. I can't work as I am a nurse and have to be on my feet alot, and loke most of the replies, my knee gets stiff after 10-15 minutes of standing. I was referred to a pain management specialist who wants me to go back to PT and see a psychiatrist for my depression. I had the surgury to get off pain pills and now the knee hurts twice as much as before the surgury. And I can't sleep at night even with sleeping pills. Something that was supposed to make my life better has just about ruined it now. I guess I will try and get a second opinion also. By the way my lab is normal. Any suggestions? By the way since the surgury on the bottom right of the knee (?tendon) I will get sharp sever pain if I move the knee a certain way or bend it. My OS practicioner says alot of patients complain about that but can't tell me why or what it is. Any one else have this problem?

[Jan_L.]

Hello lsusaint,

You TKR story sounds very much like mine.  About 4 -5 months aftr my first TKR I knew something was very wrong and wasn't willing to let the first surgeon operate on my knee again.  I spent quite a bit on time on-line and was lucky to find that I had a surgeon close to where I lived that specialized in TKR, his whole practice was limited to joint replacemetns.

I learned that in implant cant be pit in slightly mal-roated and that can cuase problems.  Your doctor could have put in the wrong size implant.   In my case it turns out the first surgeon attached a liagment ins uch a way that in prevents the knee from bending and was known for causing profound pain!  I still don't know how a surgeon from one of the best hospitals in the country could make a mistake of this nature.  It is shocking!!

So I suggest you locate a doctor that specializes in TKR and see if they cn diagnosis and fix your problem.  Like you, I was 48 years old when this hjappened to me.  So however operates on you next neds to get it right.  If you ca afford it, I would consider traveling at least to get asecond opinion, even if you can't afford to go away from home to have the surgery.  Where do you live?  My doctor is in Michigan.

Of course you are depresed.  Some idot ruined your life!  I am just now starting to come off all of the pain meds I was on for so long.  Living in profound pain is horrible!!  What kept me going was I just kept searching for a solution and I had a wonderufl internist who worked very hard to manage my pain.  I think you hve to have hope that someway , somehow you will feel better.  I was ready to let them fuse my leg and was beginning to consider amputation.  So I can't stress this enough, finding the right doctor is so important.

If you go to the new doctor for a second opinion I suggest you  DO NOT say anything bad aout the first doctor.  THe really good doctors can pick and choose who there are willing to treat.  If they think you are angry enough to sue your first doctor thaty have not be willing to take you on as a patient.  I never said one bad word about my first doctor, even after what has been found I havent' said anything to him.  I was lucky my new doctor was willing to try and help me.  His secretary told me that he hates cleaning up other doctor's mistakes and offen refuses to try.  I think part of the reason he was wiling to help me was because of my additude, but in all honesty I will nevre know.  I am only 8 weeks post-p[ and I am now doing much better, it is night and day compared to how I felt after my first surgery.

Please let me know if I can be of any help.  If you need to vent your frustration, this is the place, we will understand!!  If you just need to talk with someone that has struggled with the same sort of thing I would be glad to listen.  Hang in there!!  I know how difficult this can be, we will do what we can to help provide some emotional support while you are finding a doctor to fix your knee. 

Does your pain ease up if you wear a brace that immbilizes your knee?

Jan

[Cescollins]

Hi, I am a young 63 and had a TKR  on Feb 4th 05.  I have 115 deg. of flexion but have pain most of the time, especially at night.  I travel a lot and get worse pain when in the aircraft! 
In a strange kind of way, it is a big relief to know that I am not alone.  I have met other people who think their tkr is wonderful and I was beginning to think things had gone wrong just for me.  My surgeon is a knee specialist and says the knee is ok, the op was successful, and that it'll be fine but I am having more pain now than I did before the op.

Does  the pain ever go away?

John