Severe Pain after 2nd TKR

Posted by ssbionicknee @ssbionicknee, Sep 8, 2019

I had a right TKR in May of 2018 and it was painful, but tolerable. Physical Therapy seemed to go fairly smoothly. In August of 2019, I had my left TKR and am having a horrible time controlling the pain and Physical therapy is not going near as smoothly. I went to PT last Friday and was in extreme pain afterward. I was up all night. I had sharp pains inside the wound, extreme sensitivity to touch on the inside of my knee, what felt like spasms in the back of the knee and the knee was very sensitive to anything touching it. I had to keep it still and iced all day Saturday in order to get the pain under control. I know I need to do my exercises, but am afraid of triggering the pain again. I have heard that no 2 knee replacements are the same, but this one seems to be really bad. Is this normal? I have to find a happy medium when doing physical therapy. Any thoughts or suggestions?

Interested in more discussions like this? Go to the Joint Replacements Support Group.

@erikas

@gramedie Welcome to Mayo Clinic Connect, a place to give and get support.

I'm sorry to hear you are having pain.

You'll notice that I moved your question to an existing discussion. I did this so you could connect with members like who @sprinrosa64 @auxiliary @judybearden1 have discussed this topic in the past. You may wish to scroll through the past posts to find information and connect. You may also wish to scroll through past discussions and posts in the Joint Replacements group.

- Joint replacements https://connect.mayoclinic.org/group/joint-replacements/

May I ask what your provider/doctor/surgeon has said regarding your symptoms?

Jump to this post

Haven't contacted him as of yet..

REPLY

Severe Knee Pain for 21 months after Knee Replacement.
Sorry in advance for this being so long. I need suggestions from any and all on severe pain after a knee replacement. Had Left knee replaced in Sept 2019. Age 65. I knew what to expect due to prior knee and hip replacements. Due to a severe basketball injury at age 24, I've had two replacements on my right knee. One when I was 39 and a revision at 55. I've also had both hips replaced. The left one replaced twice due to a recall when the metal broke down and gave me blood poisoning. I mention all this as I knew what I was getting into and didn't have an unreal expectations as some doctors accuse people of when there are problems.
I have been in severe pain ever since the left knee was replaced and it just never got better after the surgery. The pain is mostly above the kneecap, below the kneecap and on the lateral (outside) side of my leg. But my entire leg is sensitive and painful just to the touch. I go nuts if my cat walks over my leg. It is also stiff and totally useless on stairs but I do have full ROM. I did months of therapy. I also biked and went swimming. NOTHING helped. I went back to my original surgeon who had previously done ALL my replacements and I had gone to him for 30 years. I was tested for infection and unusual inflammation and had new Xrays. Everything tested okay. I went back to therapy to see if that would help the pain. I also biked and went swimming some more. Nothing helped. I went back to my surgeon late last summer and he blew me off without even looking at it. At that point it was almost a year. I went to another surgeon who was less experience but I thought he might take more of an interest. He redid the infection and unusual inflammation test and Xrays, but again they were okay. He also sent me to any allergist to test for metal allergies. They just slapped something on my back for 2 days, charged me $350 and found nothing. I've since read multiple times that skin allergy tests don't really indicate an allergy to artificial joints. I also wonder given all my other artificial joints whether I would have an allergy but none of my other joints have nickel plus the tests didn't test for cements. I got the records for my previous replacements and the cements used were different. Plus the body can change and become allergic to different things as you get older. My knee replacements are from different manufacturers. The one I'm having problems with right now is a Stryker Triathalon. My other knees is a DePuy PFC Sigma. I have gone to a pain specialist for years due to the damage to my right leg from the basketball injury when I was in my 20s. My pain specialist did a Nerve Ablation on my left leg/knee to block the pain. This helped somewhat for about 4 months but I have again been in severe pain for months. No pain medication helps as I am considered to be a rapid metabolizer of pain meds. Basically meaning Ive been using pain meds so long my body no longer responds to them. Although I have only used extended release pain meds for the last few years. No immediate release meds as they don't work. So last week I went saw another surgeon at the University of Wis. He also tested for infection, unusual inflammation and did Xrays. Again these showed nothing. He also told me there was no such thing as allergies to the metals or cements in knee replacements which I though was weird as I've read dozens of studies saying that it is a possibility. I still wonder about this as I keep getting rashes on my stomach and abdomen area for no reason. Some of the literature says a rash can indicate an metal allergy. This surgeon told me he couldn't help me and once I told him that I had a recalled hip on the same side as my knee, he blamed the pain on my hip and walked out. I'm not having any problems with my hip. I found a blood test for metal and cement allergies called an LTT test from a Orthopedic lab in Chicago but its $550. My insurance won't tell me whether they'll will pay for it as I have to pay for it up front and then submit the bill back to my insurance. I'm at a total loss as to what to do. It will be two years in Sept. I can't walk much. I can't do steps at all. I'm in pain 24/7/365. I can't do anything I used to enjoy and quite frankly I can't live like this much longer. My dog hasn't been on a walk in 21 months. So has anyone actually been allergic to a Stryker Triathalon or a specific cement, called Simplex P Speed Set w/Methymethacrylate. Does an x-ray test for malposition of the components, soft tissue imbalance or problems with the knee sleeve? Or how does one get tested for for those things. Does anyone else have any other ideas or suggestions of who to see? I am beyond frustrated and really don't want to live like this. I was teaching but I retired early last year as I can't stand or walk. I can't take this any longer. I'm sorry I ever had this knee replaced. It was starting to be bone on bone but it was never as bad as all of this. Its like a rat gnawing on my brain all day, every day. ( I should mention my original surgeon retired.)

REPLY
@psg25

Severe Knee Pain for 21 months after Knee Replacement.
Sorry in advance for this being so long. I need suggestions from any and all on severe pain after a knee replacement. Had Left knee replaced in Sept 2019. Age 65. I knew what to expect due to prior knee and hip replacements. Due to a severe basketball injury at age 24, I've had two replacements on my right knee. One when I was 39 and a revision at 55. I've also had both hips replaced. The left one replaced twice due to a recall when the metal broke down and gave me blood poisoning. I mention all this as I knew what I was getting into and didn't have an unreal expectations as some doctors accuse people of when there are problems.
I have been in severe pain ever since the left knee was replaced and it just never got better after the surgery. The pain is mostly above the kneecap, below the kneecap and on the lateral (outside) side of my leg. But my entire leg is sensitive and painful just to the touch. I go nuts if my cat walks over my leg. It is also stiff and totally useless on stairs but I do have full ROM. I did months of therapy. I also biked and went swimming. NOTHING helped. I went back to my original surgeon who had previously done ALL my replacements and I had gone to him for 30 years. I was tested for infection and unusual inflammation and had new Xrays. Everything tested okay. I went back to therapy to see if that would help the pain. I also biked and went swimming some more. Nothing helped. I went back to my surgeon late last summer and he blew me off without even looking at it. At that point it was almost a year. I went to another surgeon who was less experience but I thought he might take more of an interest. He redid the infection and unusual inflammation test and Xrays, but again they were okay. He also sent me to any allergist to test for metal allergies. They just slapped something on my back for 2 days, charged me $350 and found nothing. I've since read multiple times that skin allergy tests don't really indicate an allergy to artificial joints. I also wonder given all my other artificial joints whether I would have an allergy but none of my other joints have nickel plus the tests didn't test for cements. I got the records for my previous replacements and the cements used were different. Plus the body can change and become allergic to different things as you get older. My knee replacements are from different manufacturers. The one I'm having problems with right now is a Stryker Triathalon. My other knees is a DePuy PFC Sigma. I have gone to a pain specialist for years due to the damage to my right leg from the basketball injury when I was in my 20s. My pain specialist did a Nerve Ablation on my left leg/knee to block the pain. This helped somewhat for about 4 months but I have again been in severe pain for months. No pain medication helps as I am considered to be a rapid metabolizer of pain meds. Basically meaning Ive been using pain meds so long my body no longer responds to them. Although I have only used extended release pain meds for the last few years. No immediate release meds as they don't work. So last week I went saw another surgeon at the University of Wis. He also tested for infection, unusual inflammation and did Xrays. Again these showed nothing. He also told me there was no such thing as allergies to the metals or cements in knee replacements which I though was weird as I've read dozens of studies saying that it is a possibility. I still wonder about this as I keep getting rashes on my stomach and abdomen area for no reason. Some of the literature says a rash can indicate an metal allergy. This surgeon told me he couldn't help me and once I told him that I had a recalled hip on the same side as my knee, he blamed the pain on my hip and walked out. I'm not having any problems with my hip. I found a blood test for metal and cement allergies called an LTT test from a Orthopedic lab in Chicago but its $550. My insurance won't tell me whether they'll will pay for it as I have to pay for it up front and then submit the bill back to my insurance. I'm at a total loss as to what to do. It will be two years in Sept. I can't walk much. I can't do steps at all. I'm in pain 24/7/365. I can't do anything I used to enjoy and quite frankly I can't live like this much longer. My dog hasn't been on a walk in 21 months. So has anyone actually been allergic to a Stryker Triathalon or a specific cement, called Simplex P Speed Set w/Methymethacrylate. Does an x-ray test for malposition of the components, soft tissue imbalance or problems with the knee sleeve? Or how does one get tested for for those things. Does anyone else have any other ideas or suggestions of who to see? I am beyond frustrated and really don't want to live like this. I was teaching but I retired early last year as I can't stand or walk. I can't take this any longer. I'm sorry I ever had this knee replaced. It was starting to be bone on bone but it was never as bad as all of this. Its like a rat gnawing on my brain all day, every day. ( I should mention my original surgeon retired.)

Jump to this post

Hello @psg25, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I have had my right knee replaced but I don't have any experience with metal allergy testing. I did find some information that may be helpful though.

Diagnosis of Metal Hypersensitivity in Total Knee Arthroplasty: A Case Report: https://www.frontiersin.org/articles/10.3389/fimmu.2019.02758/full

There is another discussion you might find helpful where other members are discussing this issue.
-- Severe metal allergy to titanium, nickel need joint replacement: https://connect.mayoclinic.org/discussion/severe-allergy-to-titanium-nickel-need-tkr-in-severe-pain/

You might also appreciate the information shared by members in this related discussion --
Need TKR and had positive allergy testing / Bone Cement and Metals https://connect.mayoclinic.org/discussion/need-tkr-and-had-positive-allergy-testing-bone-cement-and-metals/

@grandpacb, @debbraw, and @sueinmn may also have some suggestions or thoughts to share with you.

You mentioned your insurance company won't tell you if they will cover the allergy testing until you submit the bill. Here is some information that may help - Tips for When Your Medical Insurance Company Will Not Pay: https://www.verywellhealth.com/health-insurance-company-wont-pay-3231743

Does your insurance company have any arbitration information on denied claims?

REPLY
@psg25

Severe Knee Pain for 21 months after Knee Replacement.
Sorry in advance for this being so long. I need suggestions from any and all on severe pain after a knee replacement. Had Left knee replaced in Sept 2019. Age 65. I knew what to expect due to prior knee and hip replacements. Due to a severe basketball injury at age 24, I've had two replacements on my right knee. One when I was 39 and a revision at 55. I've also had both hips replaced. The left one replaced twice due to a recall when the metal broke down and gave me blood poisoning. I mention all this as I knew what I was getting into and didn't have an unreal expectations as some doctors accuse people of when there are problems.
I have been in severe pain ever since the left knee was replaced and it just never got better after the surgery. The pain is mostly above the kneecap, below the kneecap and on the lateral (outside) side of my leg. But my entire leg is sensitive and painful just to the touch. I go nuts if my cat walks over my leg. It is also stiff and totally useless on stairs but I do have full ROM. I did months of therapy. I also biked and went swimming. NOTHING helped. I went back to my original surgeon who had previously done ALL my replacements and I had gone to him for 30 years. I was tested for infection and unusual inflammation and had new Xrays. Everything tested okay. I went back to therapy to see if that would help the pain. I also biked and went swimming some more. Nothing helped. I went back to my surgeon late last summer and he blew me off without even looking at it. At that point it was almost a year. I went to another surgeon who was less experience but I thought he might take more of an interest. He redid the infection and unusual inflammation test and Xrays, but again they were okay. He also sent me to any allergist to test for metal allergies. They just slapped something on my back for 2 days, charged me $350 and found nothing. I've since read multiple times that skin allergy tests don't really indicate an allergy to artificial joints. I also wonder given all my other artificial joints whether I would have an allergy but none of my other joints have nickel plus the tests didn't test for cements. I got the records for my previous replacements and the cements used were different. Plus the body can change and become allergic to different things as you get older. My knee replacements are from different manufacturers. The one I'm having problems with right now is a Stryker Triathalon. My other knees is a DePuy PFC Sigma. I have gone to a pain specialist for years due to the damage to my right leg from the basketball injury when I was in my 20s. My pain specialist did a Nerve Ablation on my left leg/knee to block the pain. This helped somewhat for about 4 months but I have again been in severe pain for months. No pain medication helps as I am considered to be a rapid metabolizer of pain meds. Basically meaning Ive been using pain meds so long my body no longer responds to them. Although I have only used extended release pain meds for the last few years. No immediate release meds as they don't work. So last week I went saw another surgeon at the University of Wis. He also tested for infection, unusual inflammation and did Xrays. Again these showed nothing. He also told me there was no such thing as allergies to the metals or cements in knee replacements which I though was weird as I've read dozens of studies saying that it is a possibility. I still wonder about this as I keep getting rashes on my stomach and abdomen area for no reason. Some of the literature says a rash can indicate an metal allergy. This surgeon told me he couldn't help me and once I told him that I had a recalled hip on the same side as my knee, he blamed the pain on my hip and walked out. I'm not having any problems with my hip. I found a blood test for metal and cement allergies called an LTT test from a Orthopedic lab in Chicago but its $550. My insurance won't tell me whether they'll will pay for it as I have to pay for it up front and then submit the bill back to my insurance. I'm at a total loss as to what to do. It will be two years in Sept. I can't walk much. I can't do steps at all. I'm in pain 24/7/365. I can't do anything I used to enjoy and quite frankly I can't live like this much longer. My dog hasn't been on a walk in 21 months. So has anyone actually been allergic to a Stryker Triathalon or a specific cement, called Simplex P Speed Set w/Methymethacrylate. Does an x-ray test for malposition of the components, soft tissue imbalance or problems with the knee sleeve? Or how does one get tested for for those things. Does anyone else have any other ideas or suggestions of who to see? I am beyond frustrated and really don't want to live like this. I was teaching but I retired early last year as I can't stand or walk. I can't take this any longer. I'm sorry I ever had this knee replaced. It was starting to be bone on bone but it was never as bad as all of this. Its like a rat gnawing on my brain all day, every day. ( I should mention my original surgeon retired.)

Jump to this post

psg25, I too am stuck in this unbelievable pain after TKR with no answers. My pain is in knee and below, I had it done in 2018 and revision in 2020 with no relieve . I have tried numerous shots , test , cut nerves with no answers. Doctors check alergries, xrays nothing. By far most doctors tell me it;s nerve damage or nerve condition after 1st replacement and there is nothing tat can be done since I have tried many different things. When sitting or lying down I am fine , stand up and walk pain goes right to a 9. I just want to be able to walk. New doctor says last resort will be DRG implant. I have a meeting with him june 2 to go over a plan. PRACTICING MEDICINE HAS A WHOLE NEW MEANING TO ME Hang in there, keep searching. Steve

REPLY
@sprinrosa64

psg25, I too am stuck in this unbelievable pain after TKR with no answers. My pain is in knee and below, I had it done in 2018 and revision in 2020 with no relieve . I have tried numerous shots , test , cut nerves with no answers. Doctors check alergries, xrays nothing. By far most doctors tell me it;s nerve damage or nerve condition after 1st replacement and there is nothing tat can be done since I have tried many different things. When sitting or lying down I am fine , stand up and walk pain goes right to a 9. I just want to be able to walk. New doctor says last resort will be DRG implant. I have a meeting with him june 2 to go over a plan. PRACTICING MEDICINE HAS A WHOLE NEW MEANING TO ME Hang in there, keep searching. Steve

Jump to this post

Hi Steve, Sorry to hear your'e in the same boat as me. Just amazing these physicians barely take an interest in the fact we are miserable and then just walk away without a care. Like we are making our pain up. At least you don't get the additional condescending attitude they give to women. The guy I just saw at U of Wis gave me the "you're just a stupid woman" act on top of everything else. I'm also considering an implant for pain. I'm going to get the metal/cement allergy test done first. Did you get tested for an allergy to the cement? They are finding that is an issue with some people. Also they have found skin allergy tests to be unreliable. There is a blood test called an LTT test. A lab in Chicago, Orthopedic Analysis will do the test. You can order a test kit from their web site-- orthopedicanalysis.com. It's about $550 upfront. I'll then submit it to my insurance and see if they pay for it. If it turns out positive, some people are going with a cementless TKR. Zimmer BioMet is a cementless TKR. I think its the only one on the market.
The implant for pain you mention would be my last resort if they don't find anything. Pain is an indication of a problem. Its unfortunate doctors aren't more interested in detective work when something goes wrong. I also had a Genicular Nerve block & Radiofrequency Ablation of the knee joint. It reduced my pain for about 6 months and then it came back. Have you tried that procedure? Google it if you want more info. Also I'm exploring something called "Ultra Hyper Rapid Metabolizer." Its a special DNA test to test to see what my pain medication levels should be at as currently NO pain medications help in any amount. If I find out anything else that might help you, I'll send it your way. Take care.

REPLY
@zakcat

Don't fear the MUA too much. It can really help, and it's not as bad as you are expecting.

Jump to this post

Not bad. I had three on one knee and two on other. TKR three months apart 11 years ago I know that’s what caused my right band feeling. Inthink the scar tissue of fascia is the problem.

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