Stiff knee NC
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TKR Suggestions needed for “tight band” feeling
- Thread starter Stiff knee NC
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I still have a very tight knee.I can walk ok just have a very hard doing the steps.I give up on the tight knee and I just live with it. I do my stretches and that helps for awhile then it comes right back.
Stiff knee NC
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Stiff knee NC
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Saw 2 doctors last week: my NEW Ortho dr and the Duke dr. The new Ortho dr said he can go in and, arthroscopically, “clean up” my scar tissue; the Duke dr said he didn’t think that that would be very helpful and wasn’t sure anyone on staff would even do it! So... conflicting opinions, again.
They did BOTH mention my kneecap and the possiblity of putting a plastic “button” underneath it. I continue to have terrible tightness across the front of my kneecap (it IS better after PT but that’s 40 mins of massage and stretching) and bad pain on the left side of my (left) knee (right underneath the “numb” area where the nerve was cut). The Ortho also said he could open me up and do a scar clean up and put the button in.
My husband doesn’t support further surgery and doesn’t really want to hear about my options (if you can all them that). I’ve tried EVERYTHING else!
Im not going to do anything until October because we have 3 social activities I’d prefer to be ambulatory for. ANY thoughts?
They did BOTH mention my kneecap and the possiblity of putting a plastic “button” underneath it. I continue to have terrible tightness across the front of my kneecap (it IS better after PT but that’s 40 mins of massage and stretching) and bad pain on the left side of my (left) knee (right underneath the “numb” area where the nerve was cut). The Ortho also said he could open me up and do a scar clean up and put the button in.
My husband doesn’t support further surgery and doesn’t really want to hear about my options (if you can all them that). I’ve tried EVERYTHING else!
Im not going to do anything until October because we have 3 social activities I’d prefer to be ambulatory for. ANY thoughts?
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Wow! Sounds like August of 2019 was the wrong time to have a tkr. I still am having problems with my 1st tkr, it's easy to overdo and cause swelling and pain that only icing and rest helps. Sometimes it lasts a few days, sometime a week or more. My Dr can find nothing wrong but says if I can't live with it he'll go in and check for a scar tissue cleanup. I'm convinced I'll have no option but to live with it. My second tkr done a yr. later has behaved beautifully from the beginning. The only difference in my approach to both is aggressive pt for 6 wks with the first. Good thing I learned.....
Stiff knee NC
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@Starsfan22: I’m so glad that your second TKR has been so much better! Yeah, you and I are just days apart from our left TKR. And I, too, had aggressive PT. I’m almost certain I will have scar clean up at some point... either at the end of this yr or early 2021. The good news is that I have a new Ortho dr that I feel confident about and a wonderful PT. All I’m doing now are my at-home exercises and trying to keep my right knee happy 
Starsfan22
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Stiff Knee NC... I will be very interested in your progress! Choosing to go back into the knee takes courage I don't want to think about at this point. I can't deny something is not right but x-rays don't show it.
Stiff knee NC
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@Starsfan22: I’ve said “something’s not right in there” for at least a year too! Blood work and x-rays are fine. No test can be done to ascertain what it is. Going back in, to me, seems the only choice. I had such a horrific recovery I almost can’t bear the thought of going back in…but I can’t live with it the way it is…
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@Stiff knee NC I'm sorry it's so bad for you, I'm not there yet. Still holding out hope it'll settle down. When it's good, it's not perfect but I don't think about it. Overdoing should not be a thing for either of us at this point.
@Stiff knee NC Hi - I haven't been around here much lately. PT has given up on me - completely justified. Working at home but just like every day is starting over. I can stretch & gain a bit but 15-30 minutes later it's gone .... and that's the way it has been since the TKR now a year ago. But I sure don't have the flexion you have & my walking distance is very limited.
I'm trying a JAS Dynamic Splint now but so far, getting the same results - my 'bad' scar tissue/adhesions won't stretch & stay but acts like a rubber band. Ideally, this device should have been recommended last summer.
I'm still seeing P. Carnes at Ral Neuro Pain Clinic but that's for the CRPS in my feet rather than my knee. I like their set-up there. Have to get my feet back before pursuing a fix for my knee.
I've found my 'last resort' but not ready for that yet .... search for Dr. Henry Finn at Weiss Hospital in Chicago (under 2 hr. nonstop flight) - arthrofibrosis specialist, for one. His revision may be too drastic for your situation - radiation just before surgery, tkr revision using his own knee hardware ('the Finn hinged knee'), removes a couple of ligaments that the bad stuff likes to latch on to, rehab for 3-4 weeks in Chicago.
Had figured I'd check at Duke next after I give this JAS gizmo a good try but from what you were told, that does not sound promising for me, either. What we both need, it seems, is to find a doc that does the lysis of adhesions in the knee but with low dose radiation first - radiation supposedly greatly reduces the chances of the bad stuff just growing back again. I'd try that once before a Finn revision.
My surgeon basically gave up at the end of 2020 - saying nothing he can do, didn't think I'd find anyone that would go into this knee - too great a chance of worsening my situation. It's sounding like he is correct .... except for the radiation intrigue.
So basically my day-to-day start is about 73 degrees - decreasing to 60 & super stiff/swollen after a short walk or enough walking around the house & yard. Big Sigh. I still sleep with the ice machine. Fun times.
I'm trying a JAS Dynamic Splint now but so far, getting the same results - my 'bad' scar tissue/adhesions won't stretch & stay but acts like a rubber band. Ideally, this device should have been recommended last summer.
I'm still seeing P. Carnes at Ral Neuro Pain Clinic but that's for the CRPS in my feet rather than my knee. I like their set-up there. Have to get my feet back before pursuing a fix for my knee.
I've found my 'last resort' but not ready for that yet .... search for Dr. Henry Finn at Weiss Hospital in Chicago (under 2 hr. nonstop flight) - arthrofibrosis specialist, for one. His revision may be too drastic for your situation - radiation just before surgery, tkr revision using his own knee hardware ('the Finn hinged knee'), removes a couple of ligaments that the bad stuff likes to latch on to, rehab for 3-4 weeks in Chicago.
Had figured I'd check at Duke next after I give this JAS gizmo a good try but from what you were told, that does not sound promising for me, either. What we both need, it seems, is to find a doc that does the lysis of adhesions in the knee but with low dose radiation first - radiation supposedly greatly reduces the chances of the bad stuff just growing back again. I'd try that once before a Finn revision.
My surgeon basically gave up at the end of 2020 - saying nothing he can do, didn't think I'd find anyone that would go into this knee - too great a chance of worsening my situation. It's sounding like he is correct .... except for the radiation intrigue.
So basically my day-to-day start is about 73 degrees - decreasing to 60 & super stiff/swollen after a short walk or enough walking around the house & yard. Big Sigh. I still sleep with the ice machine. Fun times.
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@bs27: SO good to hear from you! Are you talking radiation like used for cancer patients??! Not sure I want to do that if only bc there’s a lifetime limited amount (I think) you can get and if I ever really need it I don’t want to have a reduced amt, if that makes sense. That Dr. Finn procedure you described sounds SCARY! Not sure I’d ever consider that…
I would encourage you again to see Brent at Sports and More for PT. If anyone can help you, he can!
Thanks for the contact name at Ral Neuro. I will check out the JAS splint to see what it does…appreciate that tip, too.
I’m wondering what practice you went to, if you feel comfortable sharing that. I went to EO and am now going to Ral Ortho.
If you do decide to go to Duke, I’d recommend asking for an appointment w/the doctor’s PA first. He or she can help you get an appointment w/the doctor a LOT sooner.
Have you considered a nerve block or nerve ablation? Maybe the person at Ral Neuro could discuss with you. Honestly, at this point, I don’t care how much flexion I can get…I just want the tightness to go away. One thing that’s helped is a stationary bike, 10 mins in the am and 10 mins in the pm.
I’d be curious if any forum advisor has heard of radiation used for treating scar tissue?
Hope you (and I) can find a solution to our problem! Wishing you much better days ahead!
I would encourage you again to see Brent at Sports and More for PT. If anyone can help you, he can!
Thanks for the contact name at Ral Neuro. I will check out the JAS splint to see what it does…appreciate that tip, too.
I’m wondering what practice you went to, if you feel comfortable sharing that. I went to EO and am now going to Ral Ortho.
If you do decide to go to Duke, I’d recommend asking for an appointment w/the doctor’s PA first. He or she can help you get an appointment w/the doctor a LOT sooner.
Have you considered a nerve block or nerve ablation? Maybe the person at Ral Neuro could discuss with you. Honestly, at this point, I don’t care how much flexion I can get…I just want the tightness to go away. One thing that’s helped is a stationary bike, 10 mins in the am and 10 mins in the pm.
I’d be curious if any forum advisor has heard of radiation used for treating scar tissue?
Hope you (and I) can find a solution to our problem! Wishing you much better days ahead!
Stiff knee NC
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@bs27: One other thought: I was on the CPM (continuous passive motion) machine for 6 hrs/day for 5 weeks. Two hours morning, noon and night. It’s electric and “bends” your knee…and you increase the amount of bend. Wonder if that would help? My insurance wouldn’t cover it but it wasn’t too pricey.
Stiff knee NC
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I'm not familiar with the use of radiation before lysis surgery, but I understand the concept and it might help. I suspect it's a very low dose of radiation. It would be interesting to have the surgeon explain his success with it for adhesions.
The lysis of adhesions is something done to remove restrictive scar tissue. It's important to have a surgeon doing the procedure that has a lot of experience with adhesions as it's possible that the scar tissue can reappear after the surgery and the problem is not resolved.
The lysis of adhesions is something done to remove restrictive scar tissue. It's important to have a surgeon doing the procedure that has a lot of experience with adhesions as it's possible that the scar tissue can reappear after the surgery and the problem is not resolved.
Just back from a pain clinic injection ... I'm getting lumbar sympathetic nerve blocks (but without steroids, unfortunately) but that's for the CRPS in my feet rather than doing anything for my knee. My initial appointments there, after the first meeting with Dr. Carnes, were a nerve conduction study/EMG (think that just eliminated any major diseases going on that could cause my symptoms), then tibial & peroneal nerve blocks that did nothing for me. They tried a genicular nerve block to see if it improved anything with my knee (it did not) so no use for an ablation. Perhaps that would have been helpful several years before the TKR. Since then, everything has been sympathetic nerve blocks trying to calm down my feet (that started because of knee pain even before the TKR) ... more effective initially than recently.
I have been going to Ral Ortho during this entire knee saga (actually since 1976!!) but can not blame the doc (Albright) for anything that has not gone normally - all unusual reactions from my own body. He has been saying the same that Dr. Bolognesi told you ..... and Dr. Bolognesi would be my 1st choice at Duke. I don't go back to Ral. Ortho until October and at that time I want to know pretty well what I want to do/where to go next. He's been ready to send me for a second opinion but honestly doesn't know what to recommend and so the live with it talk. Yes, Dr. Finn's procedure is a last resort type procedure (and it's low dose radiation but with all the CTs I've had, what's one more?). But with 120 degrees flexion and able to walk 2 miles, it sounds like you are way beyond those traveling to see Dr. Finn. Many of his knee revision patients' stories have flexion worse than my 70, in constant pain, and a few have been told that amputation is all that's left. For the right patient, he's a miracle worker, it sounds. Many of those patients have already had multiple lysis of adhesions & a revision - only to have the adhesions return worse each times .... some in a matter of a couple months for others it may take a year, but it returns, That is the 'middleman' that I want to skip if it really looks like I'm down to a last resort attempt. I could learn to live with some stiffness & limitations but not this much - quite disabling.
I have written down your PT info at the Healthpark for future reference (my oral surgeon is in that complex) - but it's a pretty long drive from Cary. A new PT recommended the JAS knee bending device and has my current PT order though I have not actually had any PT there yet. Will probably be going just sporadically to monitor progress from the JAS thing. I never used a CPM - JAS similar in that you control the bend and increase at your own speed short of causing pain. Even taking it slowly, I still get bonus tightness & swelling. Honestly, I think it's too late for this or CPM to help but will give it a real good try. I'm lucky in that my pain is minimal - but discomfort is high - mainly can't bend and really need to walk more than 1 block without having to ice a rest for a week afterwards.
When you look at the list of arthrofibrosis specialists, the ones associated with Steadman Clinics around the country (Greenville, SC nearest) will not see AF patients that have had TKRs - only those that got AF following ACL or similar surgery.
Good luck and thanks again for all the good info. If I have success with any of this, I'll let you know what has helped!
I have been going to Ral Ortho during this entire knee saga (actually since 1976!!) but can not blame the doc (Albright) for anything that has not gone normally - all unusual reactions from my own body. He has been saying the same that Dr. Bolognesi told you ..... and Dr. Bolognesi would be my 1st choice at Duke. I don't go back to Ral. Ortho until October and at that time I want to know pretty well what I want to do/where to go next. He's been ready to send me for a second opinion but honestly doesn't know what to recommend and so the live with it talk. Yes, Dr. Finn's procedure is a last resort type procedure (and it's low dose radiation but with all the CTs I've had, what's one more?). But with 120 degrees flexion and able to walk 2 miles, it sounds like you are way beyond those traveling to see Dr. Finn. Many of his knee revision patients' stories have flexion worse than my 70, in constant pain, and a few have been told that amputation is all that's left. For the right patient, he's a miracle worker, it sounds. Many of those patients have already had multiple lysis of adhesions & a revision - only to have the adhesions return worse each times .... some in a matter of a couple months for others it may take a year, but it returns, That is the 'middleman' that I want to skip if it really looks like I'm down to a last resort attempt. I could learn to live with some stiffness & limitations but not this much - quite disabling.
I have written down your PT info at the Healthpark for future reference (my oral surgeon is in that complex) - but it's a pretty long drive from Cary. A new PT recommended the JAS knee bending device and has my current PT order though I have not actually had any PT there yet. Will probably be going just sporadically to monitor progress from the JAS thing. I never used a CPM - JAS similar in that you control the bend and increase at your own speed short of causing pain. Even taking it slowly, I still get bonus tightness & swelling. Honestly, I think it's too late for this or CPM to help but will give it a real good try. I'm lucky in that my pain is minimal - but discomfort is high - mainly can't bend and really need to walk more than 1 block without having to ice a rest for a week afterwards.
When you look at the list of arthrofibrosis specialists, the ones associated with Steadman Clinics around the country (Greenville, SC nearest) will not see AF patients that have had TKRs - only those that got AF following ACL or similar surgery.
Good luck and thanks again for all the good info. If I have success with any of this, I'll let you know what has helped!
Stiff knee NC
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@Jamie @Stiff knee NC My mistake .... the person that I thought had low-dose radiation before lysis actually had the radiation after a 2nd MUA ... still needed lots of therapy and now seems to be finally making real progress. Maybe the radiation halted the return of AF - he can't be sure. Anyway - there's a Wall St. Journal article on Dr. Finn & a couple others working on how to determine AF pre-disposition & solutions so definitely a step in the right direction. The Weiss Hospital "Dr. Finn Talks Arthrofibrosis" site mentions the WSJ story (subscription required, though).
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@Pumpkin: I was re-reading a bunch of screenshots I took from the thread of Carol, patient99…and you back in 2014. In one, you mentioned that, 2 years post-op, you still had tightness (like me) and were scheduled for a revision. Did you have the revision? Was it scar tissue or something else? How was recovery and, most importantly, how are you today? It’s many years later and I pray you are much better!
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Had a revision in 2014 for flexion instability, I now have a hinged knee that is very stable. My knee has about 130 degrees of flexion, extension is 0 degrees.
Tearing tendons 6 weeks after my TKR, is what lead to the Revision
Knee gets a little stiff with weather changes, and repeating motion such as cycling.
Right now my left knee is dealing with R toe surgery, and left bone on bone ankle pain, so is a little stiff with my altered gait.
Read the first few pages of my recovery for how I injured myself.
bonesmart.org
Tearing tendons 6 weeks after my TKR, is what lead to the Revision
Knee gets a little stiff with weather changes, and repeating motion such as cycling.
Right now my left knee is dealing with R toe surgery, and left bone on bone ankle pain, so is a little stiff with my altered gait.
Read the first few pages of my recovery for how I injured myself.
Hinged Joint - Revision Complete, recovery continues
I have been lurking here for a few weeks, Left TKA on Sept. 13, 2011, S & N Genesis II. Knee doing great, information here has been very helpful. 1970 left ankle sprain, 1973 left tibia fracture, healed crooked, 2000 Left partial menisectomy, notchplasty, microfracture to medial tibia, paste...
bonesmart.org
