Scar tissue after knee replacement

Hello everyone. My story is.like everyone else's. I had TKR going on 9 weeks and my knee is worse than before the surgery with scar tissue build up all around the knee that has limited my mobility. I'm at 88 degrees flex and 11 degrees straight. My PT can get it to 105 and 5 with me screaming in agony. I had a manipulation done going on 3 weeks ago and it did nothing. I've had 13 knee surgeries on this knee in my lifetime starting nwith an ACL replacement back when I was 18. I'm 46 now. O had an osteotomy with a left wedge 7 years ago. The other surgeries were scopes to clean up arthritis and torn meniscus.

Im.writing looking for help and advice. I still go to PT 3x/week. The 2 weeks just after the manipulation I went 5x/week. Other then stretching, what can I do to help combat this? I feel I'm capped with PT as I havent seen improvement there. I'm so nervous and losing faith that this TKR was the right decision.

Thank.you

Hello everyone. My story is.like everyone else's. I had TKR going on 9 weeks and my knee is worse than before the surgery with scar tissue build up all around the knee that has limited my mobility. I'm at 88 degrees flex and 11 degrees straight. My PT can get it to 105 and 5 with me screaming in agony. I had a manipulation done going on 3 weeks ago and it did nothing. I've had 13 knee surgeries on this knee in my lifetime starting nwith an ACL replacement back when I was 18. I'm 46 now. O had an osteotomy with a left wedge 7 years ago. The other surgeries were scopes to clean up arthritis and torn meniscus.

Im.writing looking for help and advice. I still go to PT 3x/week. The 2 weeks just after the manipulation I went 5x/week. Other then stretching, what can I do to help combat this? I feel I'm capped with PT as I havent seen improvement there. I'm so nervous and losing faith that this TKR was the right decision.

Thank.you

Hi, I don’t know if someone mentioned this already, but if you are on Facebook there is a group called “Arthrofibrosis Support”. Members of the group share information about treatments for scar tissue and arthrofibrosis after knee surgery. The group is a great resource, and I’ve learned a lot.

I have been in PT on and off (mostly on!) for almost four years for three knee surgeries (including 2 TKA’s.) I’m a scar tissue generator. Despite my intense pain upon bending my left leg, swelling, burning, etc. my orthopedic surgeon kept telling me that my knee was fine. I was able to get into a Pain Management program at a local university. Due to allergies and drug interactions I’m not able to take any pain medication except Tylenol. It has been a very bad few years. I’m in PT once again getting ASTYM treatments and new strengthening exercises that don’t cause additional pain. My new physical therapist said that it’s not good for me to have more intense pain and inflammation because that causes additional problems. My surgeon previously said PT means Pain and Torture, and my old PT was extremely brutal. It just caused more scar tissue to form.

Please don’t give up. I am now 52 and have developed other health issues due to these four years of pain. Keep fighting for your health. It can be frustrating, depressing, and draining, but there is help. Try that FB group. It has given me hope and the reassurance that I’m not the only one. There are answers.

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

"Don't give up,' that's such a great message. It sounds like you have been through the ringer. May I ask how you might have approached this situation differently, knowing what you know now? What can others take away from your experience?

@erikas I wrote a very long answer to your question, but then I thought about it more and didn’t post it because I realized I could not possibly have done anything differently. I think that I did all that I could.

Unfortunately, I felt like I was really at the mercy of the surgeon, and he is the kind of doctor that does one knee surgery after another. If you don’t fit into his cookie cutter mold as a patient he doesn’t care or respond. I tried to get appointments with other orthopedists recommended by my PCP, but none would see me because I had already had a TKA by my surgeon. (That made me really want to give up, but I didn’t. I think my anger fueled my will to keep going.)

On all the nights that I couldn’t sleep due to pain I researched everything I could find and understand about my symptoms. I tried to find the answer myself because the surgeon was done with me. I tried alternate therapies like acupuncture and other manual modalities done by doctors at the same university as the surgeon. One of them contacted my surgeon several
times about my case, and the surgeon wouldn’t even respond to him. That doctor finally sent me to pain management where I am now, getting physical therapy from a PT who understands the problem and treats it appropriately.

During this ongoing journey I discovered that I am not alone. There are so many people out there “like us,” and I take comfort in that. There is not yet an end in sight for me, but I am not ruined. I learned to listen to myself and to not give my power away.

So I would tell people in my situation:

1. Doctors are not gods.
2. You are not a victim.
3. Educate yourself as much as you can.
4. Advocate for yourself. If you reach one dead end, keep searching for alternate ways. Think outside the box.
5. Find and reach out to others who are in similar situations.
6. Follow your gut. (When my original PT pushed me to the breaking point and caused more damage, I should have sought out a different one. I didn’t listen to myself.)
7. Find one medical professional who is willing to be in your corner and help advocate for you or at least journey with you. My PCP has not given up on me, so I can’t give up on me.
8. Be mindful of your thoughts. I catastrophized and, especially in the middle of sleepless nights, I pictured my pain never ending and my life being over because of it. Doing that just caused more suffering.
9. Take things one step at a time (pun intended!) Don’t get ahead of yourself.
10. Be gentle with yourself. This is not your fault. You are not a lost cause. You are not your pain.

I hope this helps someone.

You have written my story. I too have finally found a caring, knowledgeable PT. I have been given hope that with hard work I can turn this knee around. This will not be a short journey. But to have answers and hope is so wonderful.

@erikas I wrote a very long answer to your question, but then I thought about it more and didn’t post it because I realized I could not possibly have done anything differently. I think that I did all that I could.

Unfortunately, I felt like I was really at the mercy of the surgeon, and he is the kind of doctor that does one knee surgery after another. If you don’t fit into his cookie cutter mold as a patient he doesn’t care or respond. I tried to get appointments with other orthopedists recommended by my PCP, but none would see me because I had already had a TKA by my surgeon. (That made me really want to give up, but I didn’t. I think my anger fueled my will to keep going.)

On all the nights that I couldn’t sleep due to pain I researched everything I could find and understand about my symptoms. I tried to find the answer myself because the surgeon was done with me. I tried alternate therapies like acupuncture and other manual modalities done by doctors at the same university as the surgeon. One of them contacted my surgeon several
times about my case, and the surgeon wouldn’t even respond to him. That doctor finally sent me to pain management where I am now, getting physical therapy from a PT who understands the problem and treats it appropriately.

During this ongoing journey I discovered that I am not alone. There are so many people out there “like us,” and I take comfort in that. There is not yet an end in sight for me, but I am not ruined. I learned to listen to myself and to not give my power away.

So I would tell people in my situation:

1. Doctors are not gods.
2. You are not a victim.
3. Educate yourself as much as you can.
4. Advocate for yourself. If you reach one dead end, keep searching for alternate ways. Think outside the box.
5. Find and reach out to others who are in similar situations.
6. Follow your gut. (When my original PT pushed me to the breaking point and caused more damage, I should have sought out a different one. I didn’t listen to myself.)
7. Find one medical professional who is willing to be in your corner and help advocate for you or at least journey with you. My PCP has not given up on me, so I can’t give up on me.
8. Be mindful of your thoughts. I catastrophized and, especially in the middle of sleepless nights, I pictured my pain never ending and my life being over because of it. Doing that just caused more suffering.
9. Take things one step at a time (pun intended!) Don’t get ahead of yourself.
10. Be gentle with yourself. This is not your fault. You are not a lost cause. You are not your pain.

I hope this helps someone.

@erikas I wrote a very long answer to your question, but then I thought about it more and didn’t post it because I realized I could not possibly have done anything differently. I think that I did all that I could.

Unfortunately, I felt like I was really at the mercy of the surgeon, and he is the kind of doctor that does one knee surgery after another. If you don’t fit into his cookie cutter mold as a patient he doesn’t care or respond. I tried to get appointments with other orthopedists recommended by my PCP, but none would see me because I had already had a TKA by my surgeon. (That made me really want to give up, but I didn’t. I think my anger fueled my will to keep going.)

On all the nights that I couldn’t sleep due to pain I researched everything I could find and understand about my symptoms. I tried to find the answer myself because the surgeon was done with me. I tried alternate therapies like acupuncture and other manual modalities done by doctors at the same university as the surgeon. One of them contacted my surgeon several
times about my case, and the surgeon wouldn’t even respond to him. That doctor finally sent me to pain management where I am now, getting physical therapy from a PT who understands the problem and treats it appropriately.

During this ongoing journey I discovered that I am not alone. There are so many people out there “like us,” and I take comfort in that. There is not yet an end in sight for me, but I am not ruined. I learned to listen to myself and to not give my power away.

So I would tell people in my situation:

1. Doctors are not gods.
2. You are not a victim.
3. Educate yourself as much as you can.
4. Advocate for yourself. If you reach one dead end, keep searching for alternate ways. Think outside the box.
5. Find and reach out to others who are in similar situations.
6. Follow your gut. (When my original PT pushed me to the breaking point and caused more damage, I should have sought out a different one. I didn’t listen to myself.)
7. Find one medical professional who is willing to be in your corner and help advocate for you or at least journey with you. My PCP has not given up on me, so I can’t give up on me.
8. Be mindful of your thoughts. I catastrophized and, especially in the middle of sleepless nights, I pictured my pain never ending and my life being over because of it. Doing that just caused more suffering.
9. Take things one step at a time (pun intended!) Don’t get ahead of yourself.
10. Be gentle with yourself. This is not your fault. You are not a lost cause. You are not your pain.

I hope this helps someone.