Revision TKR HELP - 16 months out and in pain<
- Thread starter Scheherazade
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When I saw your name I was so hoping for a good outcome for you. I'm so sorry you are going through this. Has anyone sent you for MRIs for your knees? Maybe they would show why you're having all this pain.
OP
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Scheherazade
member
I had MRIs of my knees after the initial BTKR failed - I had them done at the Hospital for Special Surgery in NYC because they have a special machine that can somehow control the distortion caused by the metal in the implants. That MRI was not at all conclusive, but when I had the revision it turned out that there was a great deal of laxity which none of the docs could see/feel prior to the surgery. This time around I haven't gone that route as it seems unlikely to yield useful information. The pain is almost like I have severe bone on bone arthritis, which of course I can't have. 
It certainly sounds like something is wrong in those knees. I pray you will find a solution.
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Scherazade,
Welcome back, sounds like you may have some answers for your continuing pain.
I have a hinged Smith and Nephew Revision knee, for ligaments that stretched out, it is very stable.
If acupuncture and other medical interventions are not helpful right away, advise you proceed directly to the revision.
Welcome back, sounds like you may have some answers for your continuing pain.
I have a hinged Smith and Nephew Revision knee, for ligaments that stretched out, it is very stable.
If acupuncture and other medical interventions are not helpful right away, advise you proceed directly to the revision.
BusterBeans
senior
I’m so sorry to read of your continuing recovery from from your TKR. If I remember correctly, you and I both had BTKRs the same day. I cannot offer the medical suggestions that others can, but I can offer my own experience in continued search for solutions.i recovered very well after surgery until I overdid PT and got bursitis in both knees. After that, I had severe pain in both knees whenever I tried to do any exercises or light sports. My OS had wanted to replace the hips before the knees but the pain in my knees was so bad that I forced the knees first. So a year after my BTKR, I had a LTHR as a mini-posterior and was back on the dance floor in 3 weeks with no PT. I continued to have extreme pain in my right knee but x-rays showed I still had several years before a TKR was required so my OS wouldnt do a THR. I moved to Florida, the pain continued and I saw 2 OSs, tests showed the implants were fine and no infection. Cortisone shot in the hip temporarily relieved the pain so a new OS did a THR. It was a lateral unfortunately so I’m still rehabbing my muscles 3 months later, but all the pain in my knee is gone. I read you’re checking your spine. It’s amazing how all these joints and discs impact each other. I wish you well and send you healing thoughts and energy. Please keep in touch. I recently had a very painful muscle spasm in the back of my neck. The doctor had me on muscle relaxers and anti-inflammatories for a week with no change at all. I went for acupuncture and 2 days later, the knot and all pain were gone. Alternative medicine might be able to help relieve pain.
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Scheherazade
member
Wow! I'd love to talk about this - I've been very wary of a hinged implant, but if it really helped you I'd feel far less hopeless and may even veer back from what was coming close to a dark depression.
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The hinged implant has given me a functional knee, my knee was too unstable for another kind of implant. Sounds like you have an excellent surgeon for a revision, that is most important. A hinged knee should stabilize your knee and give you the ability to do a lot more than you can now.
My ligaments were tested with a test for flexion instability, leg moved into knee flexion (within pain free ROM), with gentle pressure applied to the outside and inside of the knee. My knee clunked and shifted as they reached my max flexion, at that time it was 120 degrees.
I cannot tell the difference between the two implants, other than my knee is now stable.
My ligaments were tested with a test for flexion instability, leg moved into knee flexion (within pain free ROM), with gentle pressure applied to the outside and inside of the knee. My knee clunked and shifted as they reached my max flexion, at that time it was 120 degrees.
I cannot tell the difference between the two implants, other than my knee is now stable.
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OP
Scheherazade
member
Yes, that's correct! I remember that you moved to Florida and that you were a dance lover. My original OS had taken x-rays of my hips to see if I was suffering from referred pain and although I had some arthritis, when I went to someone about injections for the hip to see if it was referred pain, that dr, after an exam, said it wasn't from the hips. I know acupuncture has helped many people I know for all kinds of things, and I already have a call in to someone, but I'm not too hopeful it will work on these knees. Nice to hear from you, thanks for responding, "twin"!
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Scheherazade
member
okay, here I am another six months or so later. I feel as though I have exhausted every other possibility and am now looking at going for a rotating hinged knee replacement. I went to Belgium to see Doctor Johan Bellemans (has anyone here seen him?) as I found an article he wrote about flexion and extension laxity. He confirmed what the doctor at the Hospital for Special Surgery suggested (and which several docs at different hospitals had said was not recommended!), but Bellemans felt strongly that the Zimmer model was the right one for me. He is now looking to see if he can find a doctor for me in the US who will do it and if he can't, then I will have him do it. My only hesitation is that if I go to Belgium, I will have to pay everything out of pocket. After 4+ years of absolute misery, I'm really hopeful this is the beginning of the end of constant knee pain and muscle spasms in my right leg. The left knee, I hope, remains bearable.
Kathy0427
member
@Scheherazade, you are such an inspiration!
And I very much admire your insistence on finding a cause for your ongoing issues. I am only eight months down the road from my right knee replacement and I have been appalled at the lack of real follow through by my OS’ staff (and he) to get to the bottom of why my pain has never really subsided much.
I have been reading the stories of a number of individuals who have had difficulty with their knee replacements - as I have been very slow to “recover” also. I am now at nearly the eight month mark and I can honestly say my knee has “stabilized” to a pain level much more harsh than even before surgery. A severe burning and very uncomfortable mechanical feel seems to accompany every movement. Even when I am sitting with my legs extended and elevated, the burning pain remains, just throbbing away. If I had to do it again, I never would have had this surgery!
The OS who performed my replacement in Pittsburgh is already a revision surgeon and I am working my way down with him for all the possible causes for continued pain. The first thing on my list was a simple blood test for infection that came back negative. Now he has told me I must pay out of pocket for that allergy test, as my next step (just ticks me off that he is telling me I need it and Medicare won’t pay, as it is “experimental”). Did you have to pay for yours?
After that, he wants me to schedule an appointment with a neurologist to see if the force of my continued pain is a nerve entrapment of some sort. I was wondering if you were referred at any point to a neurologist (or any other type of doctor) for another opinion on the pain? Would any of the tests you have had thus far reveal possible nerve issues?
I guess I have a question, too. I know you said you had some relief after fluid had been removed. If the pain originated with loose tendons or ligaments, how would the removal of fluid from the bursae in the knee cap affect positively the pain coming from loose tendons?
I will be following closely your next steps and hoping you find your long sought relief.
I can imagine what you are going through and the depression that descends on you when you never have relief from the burning, searing pain is traumatizing. I can’t imagine going through this for as long as you have!
Thank you for being so open in giving us your story. I admire greatly your dogged determination to get better. And I find your catalog of all the steps you have taken - and continue to take - very instructive for how to proceed in my own case.
I will be hoping and praying you find an answer, and soon!
Kathy ( in Pittsburgh)
And I very much admire your insistence on finding a cause for your ongoing issues. I am only eight months down the road from my right knee replacement and I have been appalled at the lack of real follow through by my OS’ staff (and he) to get to the bottom of why my pain has never really subsided much.
I have been reading the stories of a number of individuals who have had difficulty with their knee replacements - as I have been very slow to “recover” also. I am now at nearly the eight month mark and I can honestly say my knee has “stabilized” to a pain level much more harsh than even before surgery. A severe burning and very uncomfortable mechanical feel seems to accompany every movement. Even when I am sitting with my legs extended and elevated, the burning pain remains, just throbbing away. If I had to do it again, I never would have had this surgery!
The OS who performed my replacement in Pittsburgh is already a revision surgeon and I am working my way down with him for all the possible causes for continued pain. The first thing on my list was a simple blood test for infection that came back negative. Now he has told me I must pay out of pocket for that allergy test, as my next step (just ticks me off that he is telling me I need it and Medicare won’t pay, as it is “experimental”). Did you have to pay for yours?
After that, he wants me to schedule an appointment with a neurologist to see if the force of my continued pain is a nerve entrapment of some sort. I was wondering if you were referred at any point to a neurologist (or any other type of doctor) for another opinion on the pain? Would any of the tests you have had thus far reveal possible nerve issues?
I guess I have a question, too. I know you said you had some relief after fluid had been removed. If the pain originated with loose tendons or ligaments, how would the removal of fluid from the bursae in the knee cap affect positively the pain coming from loose tendons?
I will be following closely your next steps and hoping you find your long sought relief.
I can imagine what you are going through and the depression that descends on you when you never have relief from the burning, searing pain is traumatizing. I can’t imagine going through this for as long as you have!
Thank you for being so open in giving us your story. I admire greatly your dogged determination to get better. And I find your catalog of all the steps you have taken - and continue to take - very instructive for how to proceed in my own case.
I will be hoping and praying you find an answer, and soon!
Kathy ( in Pittsburgh)
skigirl
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Generally, "burning" pain is considered nerve pain---which like most things in the medical world---is not always true. But, it seems like seeing a neurologist is a good step in the right direction.
OP
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Scheherazade
member
Hi Kathy,
Thanks for the strong words of support! It has been mostly a lonely struggle, once all the obvious reasons turned out not to be the cause of my continued problems. I was never referred to a neurologist, and that could be because I didn't have a burning sensation which, as Skigirl pointed out, is often indicative of nerve problems. I was checked for just about everything else, sometimes several times for the same thing by different doctors because they mostly wanted to go through the checklist: infection, allergy or loosening of components. Those were not my problems. I have been told by some non-American OSs that American docs are extremely reluctant to use the kind of replacement which it appears I need. Far too many told me I just have to live with this (ever-increasing and life-limiting) pain, "sometimes that happens."
I think I did have to pay for the metal allergy test which cost, I think, about $500. The answer I can give you about how removing fluid from my knee helped relieve pain, given my underlying problem is ligament laxity, is that simply reducing swelling IS a big relief. It didn't relieve the underlying problem, but it did relieve the pain that was made even worse by the swelling. You are eight months out - I pray you don't have to continue much longer without finding relief. I did have initial relief after the original TKR and then again after the spacer revision, but other than a few months post-recovery, pre-relapse honeymoon, I have been in continuous pain for four years. I know there are people, including on this forum, who have had it worse for far longer. But that doesn't make me feel better, it just makes me feel awful for them.
I'm sure you feel the same way.
Thanks for the strong words of support! It has been mostly a lonely struggle, once all the obvious reasons turned out not to be the cause of my continued problems. I was never referred to a neurologist, and that could be because I didn't have a burning sensation which, as Skigirl pointed out, is often indicative of nerve problems. I was checked for just about everything else, sometimes several times for the same thing by different doctors because they mostly wanted to go through the checklist: infection, allergy or loosening of components. Those were not my problems. I have been told by some non-American OSs that American docs are extremely reluctant to use the kind of replacement which it appears I need. Far too many told me I just have to live with this (ever-increasing and life-limiting) pain, "sometimes that happens."
I think I did have to pay for the metal allergy test which cost, I think, about $500. The answer I can give you about how removing fluid from my knee helped relieve pain, given my underlying problem is ligament laxity, is that simply reducing swelling IS a big relief. It didn't relieve the underlying problem, but it did relieve the pain that was made even worse by the swelling. You are eight months out - I pray you don't have to continue much longer without finding relief. I did have initial relief after the original TKR and then again after the spacer revision, but other than a few months post-recovery, pre-relapse honeymoon, I have been in continuous pain for four years. I know there are people, including on this forum, who have had it worse for far longer. But that doesn't make me feel better, it just makes me feel awful for them. I'm sure you feel the same way.
skigirl
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I am sorry that you have had such a frustrating time of it---I agree chronic pain changes everything in your life.
I did see a lymphatic massage therapist for my one knee which remained somewhat swollen for longer than I wanted it to be. She was very nice and very helpful. She showed me how to do my own lymphatic massage and was really helpful to me and did relieve the swelling. One of the things she gave me was a "wrap" which frankly looked like nothing. It was a foam wrap with ridges in it. Because she had been so nice, I did try it---wearing it at night as she suggested. I was shocked the second day when I took it off and saw that the swelling had gone down substantially. It was unexpected, I can tell you. I saw her for a month, once a week and it made a difference int the swelling on my knee.
I know that you have tried so many things and I don't think that this is a final solution by any means, but if a therapist could at least help reduce some of the swelling, perhaps it would help your pain. Have you been able to tolerate a brace of any king? I know that before my surgery I wore a brace---first a neoprene one and then a plastic, custom one while skiing and they did help quite a bit. I think the custom one was a Don Joy, it was bulky but did stop my wonky knee from going everywhere with each step. I saw myself walking in a video and thought i looked like a sailor lurching along. I tried the brace first and then that video is what sent me to a knee surgeon!!
I did see a lymphatic massage therapist for my one knee which remained somewhat swollen for longer than I wanted it to be. She was very nice and very helpful. She showed me how to do my own lymphatic massage and was really helpful to me and did relieve the swelling. One of the things she gave me was a "wrap" which frankly looked like nothing. It was a foam wrap with ridges in it. Because she had been so nice, I did try it---wearing it at night as she suggested. I was shocked the second day when I took it off and saw that the swelling had gone down substantially. It was unexpected, I can tell you. I saw her for a month, once a week and it made a difference int the swelling on my knee.
I know that you have tried so many things and I don't think that this is a final solution by any means, but if a therapist could at least help reduce some of the swelling, perhaps it would help your pain. Have you been able to tolerate a brace of any king? I know that before my surgery I wore a brace---first a neoprene one and then a plastic, custom one while skiing and they did help quite a bit. I think the custom one was a Don Joy, it was bulky but did stop my wonky knee from going everywhere with each step. I saw myself walking in a video and thought i looked like a sailor lurching along. I tried the brace first and then that video is what sent me to a knee surgeon!!
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Scheherazade
member
Oh, yes, I have several different braces, some with metal hinges, others with straps that wrap around above and below the knee. I have been wearing one for over a year. I can make it from the bed to the bathroom in the middle of the night without one, but that's really it. Without a brace of some sort I would be either bedridden or wheelchair-ridden already. I have to hold my hand over my knee, kind of holding it together when I'm in the car on a bumpy road, even when wearing a brace, so those docs who have told me I don't really have instability really make me angry.
OP
OP
Scheherazade
member
Okay, I'm heading to Houston Methodist Hospital mid-June for a rotating hinged knee implant on June 18th. If this works and lasts for more than 6 months, I'll have the left knee done as well, and then HOPE I'm done. If this works I will be sure to ask the folks at Rothman, etc. WHY they told me to just live with the pain. If it doesn't work...I'll just have to live with the pain.
TimeBuster
member
I had my recent TKR revision through Rothman. I'm in New Jersey and I see you're from Philly. Would be interesting to know the name of your OS since my OS resigns in Philadelphia. It wouldn't happen to be Dr. Ponzio?
OP
OP
Scheherazade
member
I'll be there until the end of the month.
How long do you plan to stay in Houston after surgery?
BusterBeans
senior
“Twin”,
So happy to hear you will soon have a permanent solution to this 4-year struggle. But what a geographical as well as medical journey you’ve been on! Kudos to you for continuing to research, interview and persist to find the elusive answer that the surgeons couldn’t identify. Let us know if there is anything we can do to cheer you on. We’ll be here.
So happy to hear you will soon have a permanent solution to this 4-year struggle. But what a geographical as well as medical journey you’ve been on! Kudos to you for continuing to research, interview and persist to find the elusive answer that the surgeons couldn’t identify. Let us know if there is anything we can do to cheer you on. We’ll be here.
