Comments
1 - 18 of 18 Comments Last updated Aug 18, 2013
jbk_fitness

Novato, CA

|
Report Abuse
|
Judge it!
|
#1
Oct 15, 2011
 
It's been two (2) years since my TKR. Prior to TKR I was an active road bike cyclst & enthusiast and taught indoor cycle classes. I've never been able to achieve more than 85 degree flexion and Kaiser Permanente is refusing to help me, actually telling me no one can help me. I refuse to believe this as I am an active fitness professional and I want my life back! At two years post-TKR, is it now impossible to achieve healthy ROM? I've asked for arthroscopy surgery, and even in rehab asked for a manipulation, but surgeon actually refused saying it would not help. If anyone has had this experience and/or has suggestions, please respond. Many thanks!
Brenda

AOL

|
Report Abuse
|
Judge it!
|
#2
Oct 16, 2011
 
jbk_fitness wrote:
It's been two (2) years since my TKR. Prior to TKR I was an active road bike cyclst & enthusiast and taught indoor cycle classes. I've never been able to achieve more than 85 degree flexion and Kaiser Permanente is refusing to help me, actually telling me no one can help me. I refuse to believe this as I am an active fitness professional and I want my life back! At two years post-TKR, is it now impossible to achieve healthy ROM? I've asked for arthroscopy surgery, and even in rehab asked for a manipulation, but surgeon actually refused saying it would not help. If anyone has had this experience and/or has suggestions, please respond. Many thanks!
I am trying to get help to. Its been 15 months and I am back in therapy. Its not doing any good. After the doctor promised me 15 months ago that it would be better in 1 year< it's just as bad. He said I had 3 choices. Wait it out (already 15 months), learn to live with it or have it done over and he didn't recommend me having it done over because he doesn't know what is wrong with it. He is the one that done it. He should know something. I am so tired of it.
Mindy

Wilmington, NC

|
Report Abuse
|
Judge it!
|
#3
Oct 16, 2011
 
I am 2 1/2 years out from TKR. I also have arthrofibrosis. I knew I had it within 3 weeks of TKR. At 4 weeks post op, I had arthroscopy surgery and the OS cut the fibrosis and it was better for about a day or two...seriously. It came right back. I went for a second opinion with another OS who was trained by one of the few "specialist" in AF. At 3 months post op him and my original OS together performed another arthroscopy surgery but this time they burned it out. It had grown under the new knee. Again it was better for a couple of days and it started growing back immediately. I am fortunate that I have good ROM but I live in pain 24/7 and refuse to live life on narcotics. I have done many searches and have never found anyone who had it that ever got rid of it. I was in PT for close to 6 months, did everything I was supposed to do and ended up going to 4 other ortho Docs and none had an answer. Even a doctor at Duke that told me I had to learn to live with it...which really pissed me off. My original OS and I both have hope that one day there will be a cure. My knee hurts more today than before I had the original surgery. If you hear of anything that works please post here. I am sorry for both of you as I have walked many miles in your shoes.
Cdale56

Ashaway, RI

|
Report Abuse
|
Judge it!
|
#4
Nov 19, 2011
 
I am right in the thick of this too.

I had TKR 11 months ago and the diagnosis of arthrofibrosis was applied at 5 months. I am also an avid cyclist and cannot bend knee enough when cycling for effective cycling, having to pedal on heel or arch, which plays havoc with other joints like ankle and back,

My ortho recommended arthroscopic surgery to "clean it out" and he said would gain 30% flexion.

Not totally confident with him or this plan, I went to a knee replacement specialist at a large medical center and he said to leave it alone, accept the stiffness and "live with it" as arthroscopic increases risk of infection and also is ineffective. The only alternative he suggests is another replacement.

Cycling is my passion in life and this has become frustrating because I just cannot pedal right.

Good luck
sallyb

Woburn, MA

|
Report Abuse
|
Judge it!
|
#5
Dec 7, 2011
 
cycling has been my passion too and I fully expected to ride my bike after the surgery. Well at 85 flexion I cannot and feel so sad. I bought an electric bike called the edge. I hope to at least be able to capture the freedom of riding and it also is 8 speed if i ever can pedal correctly again. I used to ride fifty or more miles a week on a beautiful fondriest bike. i now have it on the trainer but can't make the rotation. I may have to sell it. I have been advised athroscopy for scar tissue or possible revision. I miss the exercise so much and the beautiful rides. Wish you the best
bigskyangel

Bozeman, MT

|
Report Abuse
|
Judge it!
|
#6
Apr 5, 2012
 
I had tkr in June 2011. I had manipulation in Aug 2011. Monday, April 9 2012 I will have a scope to take out all the scar tissue they can. they will burn it so it doesn't regrow. I am in constant pain. Never fully goes away. My knee is swollen all the time. I am morbidly obese and know that this does not help. Physical therapy helped for the first several months. Was doing so well, lost 60# was walking inside without cane, other knee was doing pretty well too, and things were looking up. The doctor didn't write new script for physical therapy so I had to stop. I got sick for several weeks so didn't do therapy at home. When I went to start back up my knees couldn't handle it. I was in so much pain. Went back to doc and finally he had the therapist try to desensitize my knee. My nerves were so used to pain for so many years it was all they knew so everything was signaled to my brain as pain. so far (3 months) therapy has not helped at all. I also had something catching in my replaced knee from time to time and I guess throwing if off and causing terrible pain. After many times of going to doc and all the pain pills (I have taken for 4 or 5 years) I was at my wits end. I ended up hurting other knee (which also needs replaced but trying to wait as long as possible) and found torn cartilage and old meniscus tear and bone spur. So finally they are going to do a scope on both knees. I am weirded out about them doing it on replaced knee but i don't know what else to do. we know there is scar tissue, we know it is causing problems, BUT we don't know what is causing all the pain around the knees. Not sure what they will find. Had anyone had a scope done after total knee replacement and had things get better? I want to live life again, be able to walk again, be able to move so I can loose weight, and be able to do something, just something again. So tired of the pain, so tired of given more pain pills, so tired of no one knowing what to do. All pain pills seem to do anymore is make my head loopy. and all doc says they can do is give me stronger ones. Oh on a good note....I turned to alternative medicine to try for pain relief. The medical marijuana place has a suave that actually helps with the pain. I just got it and have used it a couple times but pain was gone for several hours. Pain pills don't even do that. All natural ingredients and it does not have the THC part of cannabis so you don't get high off it. It doesn't smell that great but I don't care because it helped with the pain and didn't affect my brain like the pain pills do. I am also going to look into acupuncture. Luckily my doctors are ok with me looking at other ways to try to help the pain go away cause nothing else seems to be working.
marymmm

Dießen, Germany

|
Report Abuse
|
Judge it!
|
#7
Jun 28, 2012
 
Cdale56 wrote:
I am right in the thick of this too.
I had TKR 11 months ago and the diagnosis of arthrofibrosis was applied at 5 months. I am also an avid cyclist and cannot bend knee enough when cycling for effective cycling, having to pedal on heel or arch, which plays havoc with other joints like ankle and back,
My ortho recommended arthroscopic surgery to "clean it out" and he said would gain 30% flexion.
Not totally confident with him or this plan, I went to a knee replacement specialist at a large medical center and he said to leave it alone, accept the stiffness and "live with it" as arthroscopic increases risk of infection and also is ineffective. The only alternative he suggests is another replacement.
Cycling is my passion in life and this has become frustrating because I just cannot pedal right.
Good luck
In the thick of it too as I had my right TKR 14SEP11. Not even one month later I had a closed MUA 11OCT11. I could feel these horrible painful adhesions growing & stiffening my knee. Cycling is my sanity & everyday means of getting around(when I can). I was able to ride my bicycle by MAR2012 but only short distances. 110ish Flexion/no prob with Extension. My knee felt as if I had a dead hot rock attached by over-stretched rubber bands, carrying around daily & sleeping, 24/7. On my PT's advice I saw my OS & then I saw two OS Specialists. Determining arthroscopic surgery to remove scar tissue sooner rather than later was needed. 1MAY12 I had bilateral arthroscopic ops, to remove scar tissue in my right knee & to 'tidy up' Grade 3 chondral tears in my left knee(1st left knee op).

Recovering has been painfully tricky to say the least. It is exhausting. I feel adhesions growing again. Yesterday I saw a third OS Specialist, who recommemded 'no pain' physiotherapy, to let my knee -heal- & to NOT consider another arthroscopic adhesion removal op until at least OCT.

Trying to understand Arthrofibrosis is frustrating. OS Drs disagree on how to treat AF. There is not enough known as less than 5% post TKR patients get AF. I have a Stryker T3 screwed prothetic which may be contributing to my knee forming adhesions & Osteophytes at a rapid rate.

What have you learned since your last post? Are you back on yer bike?
marymmm

Dießen, Germany

|
Report Abuse
|
Judge it!
|
#8
Jun 28, 2012
 
sallyb wrote:
cycling has been my passion too and I fully expected to ride my bike after the surgery. Well at 85 flexion I cannot and feel so sad. I bought an electric bike called the edge. I hope to at least be able to capture the freedom of riding and it also is 8 speed if i ever can pedal correctly again. I used to ride fifty or more miles a week on a beautiful fondriest bike. i now have it on the trainer but can't make the rotation. I may have to sell it. I have been advised athroscopy for scar tissue or possible revision. I miss the exercise so much and the beautiful rides. Wish you the best
Hi Sally, what is your current knee status? I'm post TKR(9mos), MUA(8mos) & Arthroscopic scar tissue removal(2mos)... I'm feeling scar tissue growing now. I saw a Specialist OS 2 days ago, xrays show Osteophytes back & front already(since my last op 2mos ago). Have you tried cycling on a foldable Brompton bike? Its a mix of a bike & a scooter, easy to ride. Best wishes...
M Haf

Orleans, VT

|
Report Abuse
|
Judge it!
|
#9
Feb 15, 2013
 
I can empathize with you. I'm 7 months post TKR and 5 months post MUA and wondering if I'll ever be able to do steps again. It seems my surgeon wants to play the wait and see game, but I'm wondering if there isn't more that can be done. Anything more with you? I'm reading about scar tissue release therapy, athroscopic scar tissue removal, surgical scar tissue removal and even revision as options. The link below seems to mention almost all of these.

http://www.healio.com/orthopedics/knee/journa...
jbk_fitness wrote:
It's been two (2) years since my TKR. Prior to TKR I was an active road bike cyclst & enthusiast and taught indoor cycle classes. I've never been able to achieve more than 85 degree flexion and Kaiser Permanente is refusing to help me, actually telling me no one can help me. I refuse to believe this as I am an active fitness professional and I want my life back! At two years post-TKR, is it now impossible to achieve healthy ROM? I've asked for arthroscopy surgery, and even in rehab asked for a manipulation, but surgeon actually refused saying it would not help. If anyone has had this experience and/or has suggestions, please respond. Many thanks!
Cdale56

Westerly, RI

|
Report Abuse
|
Judge it!
|
#10
Apr 11, 2013
 
I am heading for a revision in Boston as the OS says the cause of my stiffness is malalignment of my implants and he gives me high chances of good outcome.
I have tried to 'live with it it" as a couple of second opinions suggested, but my flexion is down in the 70s now and every other joint is starting to act up, including the other knee. Not looking forward to another surgery but can't go on like this. My bike riding is way down, I tried to ride anyway, but now have to ride on my heel now and it isn't pretty, pain wise or mentally.
Paul

Randolph, MA

|
Report Abuse
|
Judge it!
|
#11
Apr 11, 2013
 
just got the JAS Knee EZ brace for flexion several days ago, presently passive 80 degrees, assisted 99 degrees, my insurance paid for it ($1,400), for rental $250 monthly, tried the Dynasplint before my revision, didn't like it and compliance is difficult (timewise) am crossing my fingers, will let you know how it turns out
Sherri Groves

Mount Lookout, WV

|
Report Abuse
|
Judge it!
|
#12
Apr 19, 2013
 
My husband has had 2 TKR in his right knee - 1st in 07 and then 08. In between had scope & MUA. He is on pain medication - has very limited movement in his knee and is still in constant pain. He has been to the CV Clinic and Steadman Clinic but no one can offer any hope. He is very miserable. Just don't understand why something is not available w/all the medical technology that is out there. Would love to hear someone say there is help!
JL-Oakland

San Jose, CA

|
Report Abuse
|
Judge it!
|
#13
May 29, 2013
 
I've been reading all the posts of people with similar problems: arthrofibrosis inhibiting full extension and flexion post surgery.(I had a TKR in May 2012, an MUA 3 months later, and arthroscopic debridement and lateral/medial retinacular releases in November. Despite lots of PT and daily home workouts, I still have only 90-95 degrees of flexion, continuing pain, and can barely walk down stairs. I wonder if anyone has heard of or used the Graston technique, and whether that has helped significantly. I'm willing to try nearly anything to be able to cycle again. Thanks!
Eileen

Collegeville, PA

|
Report Abuse
|
Judge it!
|
#14
Jun 26, 2013
 
Wow! I just came across this site. I also am having the same problem. I had a partial in Oct, 2011 then had to have it "cleaned out" in Dec, 2011 because of all the scar tissue. OS said he was amazed at how much there was in so little time. Then 1 year later I had to have a revision of that because it had become loose. Had Revision to a total left knee in Dec, 2012. Had to have MUA in February 2013. As of today my ROM is 25 for extension and 85-90 flexion. My OS won't even consider another surgery. I am heading to Mayo Clinic at the end of July for a consult. I am only 45 and a single mom with 2 kids. I NEED to be able to walk correctly (I used to want to ride my bike again but gave up on that for now!). There has got to be something that will help us!
jb - NC

Hampstead, NC

|
Report Abuse
|
Judge it!
|
#15
Jun 26, 2013
 
I am post TKR (6 mos.) and post MUA(4 mos.). My surgery, which seemed to
go very smoothly, was soon affected by former sciatic nerve complications in that leg, and from the beginning the knee would barely flex. The more I worked with therapy, the more scar tissue/adhesions I seemed to form. After the MUA and extensive therapy, I had similar results. Have about 90-95 flexion, good extension, and fortunately little or no pain, maybe due to an injection for pain in the sciatic nerve about 4 months ago. I am unable to do a complete rotation on my stationary bike, and do stairs toddler style. I have recently returned to a daily 45 minute fairly brisk walk. Would love to have had better results but I seem to have more problems with scar tissue/adhesions the more I stress the knee with therapy or with the MUA. Surgeon asked if I'd consider another MUA, but I declined. I continue therapy at home but can't seem loosen up that tissue with anything I'm doing, feel like I start from the beginning each day. Would love to see some research on just what causes that heavy formation of tissue in some, and of course, the answer to removing it permanently.
jb - NC

Hampstead, NC

|
Report Abuse
|
Judge it!
|
#16
Aug 1, 2013
 
JL-Oakland wrote:
I've been reading all the posts of people with similar problems: arthrofibrosis inhibiting full extension and flexion post surgery.(I had a TKR in May 2012, an MUA 3 months later, and arthroscopic debridement and lateral/medial retinacular releases in November. Despite lots of PT and daily home workouts, I still have only 90-95 degrees of flexion, continuing pain, and can barely walk down stairs. I wonder if anyone has heard of or used the Graston technique, and whether that has helped significantly. I'm willing to try nearly anything to be able to cycle again. Thanks!
JL: My history can be found in post #15. I've just had my second Graston technique session and will post again when I've finished my scheduled sessions. My flexion was decreasing and I needed to do something to try to turn things around. I'm optimistic and will repost with my results, whatever they
may be. After looking into this technique, it seemed to be a therapy that might work for me without
causing further buildup of scar tissue. Wishing everyone success and hoping we may find answers
here.
JB
Jo Philbey

London, UK

|
Report Abuse
|
Judge it!
|
#17
Aug 14, 2013
 
I won't go into all my history, but had an accident and given a half knee replacement that broke down within a few months and then had to have a tkr. Was told that it was a lengthy op because of all the scar tissue but this was removed during the op. Of course the tissue came back very quickly and I had it removed twice. However my surgeon said he would not do it again because of infection. I had the other replaced (tkr) about four years ago and immediately the scar tissue reared its ugly head and I have therefore been stuck with arthrofibrosis for years. Have tried everything, but as you all know there is no remedy. But here is my question I have now been told that I need a new hip, I know it's gotta be done but worried that I will get arthrofibrosis in the hip and double the amount of pain. Does anyone have experience of this or even knows someone that has? Thanks so much for reading.
Laurie

Spring Valley, NY

|
Report Abuse
|
Judge it!
|
#18
Aug 18, 2013
 
I saw your info blog on this internet site. I have had similar issues for the past 2 years, since my first tkr. Were you able to find a physician that could/would help? I'm desperate to be out of pain. Thank you.

lafmkk@verizon.net

laurie

Tell me when this thread is updated: (Registration is not required)

Add to my Tracker Send me an email

Add your comments below

Characters left: 4000

Please note by submitting this form you acknowledge that you have read the Terms of Service and the comment you are posting is in compliance with such terms. Be polite. Inappropriate posts may be removed by the moderator. Send us your feedback.

Other Recent Knee Replacement Discussions

Title Updated Last By Comments
Loss of bending after knee replacement surgery ... (Aug '12) 1 hr Paula 33
Bad Oxford (partial) knee-replace with total kn... (Jul '09) 11 hr Patrice 112
Popping and clunking sounds coming from new knee (Jul '07) Tue Tina 231
Knee joint replacment surgery Aug 18 BossGirl 25
Is Bonesmart.org Worthwhile? (Jan '14) Aug 17 RogerWM 28
Foot drop after total knee (Aug '11) Aug 16 Nancy Mrs Claus 18
How Long Before Walking Long Distance (Apr '09) Aug 16 Ruby Bradford 25

Search the Knee Replacement Forum:
•••