TKR Turtle still hoping to cross the finish line
- Thread starter maryo52
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OP
OP
Problems persist. Really need input.
My TKA is now 16 months old. Background: After TKA surgery, I had a months-long bout with arthrofibrosis cleared up with an arthroscopic procedure and my ROM is just fine now. But still have significant effusion.
Just had my 2nd appointment with the rheumatologist who aspirated the knee the first visit and fortunately found no infection. Today I learned every test was negative. The knee aspirate has a small amount of blood but no signs of inflammation. I have no systemic inflammatory disease.
His working theory now is that either the little bit of synovium left at the patella is inflamed, or more likely, I am allergic to something in the prosthetic or cement.
So now I figure I'll contact an allergist to test for whatever he can test for, and then on to consult with some big gun ortho in Boston or NYC where it's more likely someone is familiar with my condition.
My knee is not bad nor is it good. If I'm walking on level ground it works fine, but I have to push up to get out of a chair, let myself down using my arms, and anything up steps or up hill is possible except the TKA knee takes a lot of energy to bend and lift. Still have my toilet seat elevated. The rheumatologist believes it will get no better without intervention, and actually it's the same as it was 9 months ago.
Thanks in advance for any input.
My TKA is now 16 months old. Background: After TKA surgery, I had a months-long bout with arthrofibrosis cleared up with an arthroscopic procedure and my ROM is just fine now. But still have significant effusion.
Just had my 2nd appointment with the rheumatologist who aspirated the knee the first visit and fortunately found no infection. Today I learned every test was negative. The knee aspirate has a small amount of blood but no signs of inflammation. I have no systemic inflammatory disease.
His working theory now is that either the little bit of synovium left at the patella is inflamed, or more likely, I am allergic to something in the prosthetic or cement.
So now I figure I'll contact an allergist to test for whatever he can test for, and then on to consult with some big gun ortho in Boston or NYC where it's more likely someone is familiar with my condition.
My knee is not bad nor is it good. If I'm walking on level ground it works fine, but I have to push up to get out of a chair, let myself down using my arms, and anything up steps or up hill is possible except the TKA knee takes a lot of energy to bend and lift. Still have my toilet seat elevated. The rheumatologist believes it will get no better without intervention, and actually it's the same as it was 9 months ago.
Thanks in advance for any input.
PhoenixS
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Hi Maryo!
I am so sorry that you are still having issues!
I agree that what you are going through is not normal at 16 months.
Gather up all your Xrays, the op note, the type and serial number of the implant used (should be in OS notes, or hospital record) and start getting opinions from Revisionists.
I had 2 years of horror after my TKR, and finally found an OS (in Boston) who would examine my knee.
I am now 1 month (tomorrow!!!) from my Revision and it is like night and day!
When I had my Revision, the OS also did a synovectomy (removal of the synovial tissue), in addition to correcting a myriad of other problems with my original TKR.
I would guess iof there were no signs of inflammation, that allergy to the cement would be a long shot.
Best of luck, Mary and keep us posted!
Sandy
I am so sorry that you are still having issues!
I agree that what you are going through is not normal at 16 months.
Gather up all your Xrays, the op note, the type and serial number of the implant used (should be in OS notes, or hospital record) and start getting opinions from Revisionists.
I had 2 years of horror after my TKR, and finally found an OS (in Boston) who would examine my knee.
I am now 1 month (tomorrow!!!) from my Revision and it is like night and day!
When I had my Revision, the OS also did a synovectomy (removal of the synovial tissue), in addition to correcting a myriad of other problems with my original TKR.
I would guess iof there were no signs of inflammation, that allergy to the cement would be a long shot.
Best of luck, Mary and keep us posted!
Sandy
OP
OP
Still hoping for some input.
I'm 16 months out and continue to have an effusion with no pain (except my knee gets achy after being bent for 20+ minutes due to the effusion).
No infection. Nothing found by rheumatologist. What are the differential diagnoses of persistent post-TKR effusion? Is allergy the next thing to rule out?
There is one lab in the U.S. that tests for this. I'm meeting with my primary doc next week and want to gather as much info as possible.
Anyone??!
I'm 16 months out and continue to have an effusion with no pain (except my knee gets achy after being bent for 20+ minutes due to the effusion).
No infection. Nothing found by rheumatologist. What are the differential diagnoses of persistent post-TKR effusion? Is allergy the next thing to rule out?
There is one lab in the U.S. that tests for this. I'm meeting with my primary doc next week and want to gather as much info as possible.
Anyone??!
Mary, I need to tag Jo to be sure she sees your questions. @Josephine:
Although I'm sorry you are having to go through all this, I think you are doing the right thing by continuing to seek answers. The allergy tests will tell you a lot. Plus I believe it's time to talk to some high-powered specialists as well.
Although I'm sorry you are having to go through all this, I think you are doing the right thing by continuing to seek answers. The allergy tests will tell you a lot. Plus I believe it's time to talk to some high-powered specialists as well.
OP
OP
I guess today I will call for an appointment with a busy revisionist in Boston. Then start amassing my various medical records.
If this effusion were smaller it wouldn't be a problem. I fear for the long-term consequences. Plus the question remains, what unhappiness within the knee is causing this? And what collateral damage (osteolysis?) is underway?
I read somewhere in my investigations that an effusion should be drained off. Wouldn't it just recur?
Well I love solving problems so part of this is a challenge I enjoy, and fortunately the only pain I have is from bending my leg for prolonged periods (such as in the car). I have in the back of my mind that a revision might be needed sooner or later.
If this effusion were smaller it wouldn't be a problem. I fear for the long-term consequences. Plus the question remains, what unhappiness within the knee is causing this? And what collateral damage (osteolysis?) is underway?
I read somewhere in my investigations that an effusion should be drained off. Wouldn't it just recur?
Well I love solving problems so part of this is a challenge I enjoy, and fortunately the only pain I have is from bending my leg for prolonged periods (such as in the car). I have in the back of my mind that a revision might be needed sooner or later.
Josephine
NURSE DIRECTOR EMERITA
Mary, I attended a lecture a couple of weeks ago, given by broken link removed: https://dfwsarcoma.com/about/dr-maale.php. He has made a speciality of dealing with infected joint replacements to the point where he is (in my humble opinion) one of a kind and is making discoveries never before known. The reason I am telling you this is because one issue he mentioned in the lecture was that he has found culture and sensitivity to be totally inadequate and inaccurate in these situations simply because the patient has been on so much antibiotic therapy. Therefore he now uses a very new technique that uses DNA sequencing to check for the presence of microbes. He developed this himself and it's so new it's not widely known about yet but I predict it will revolutionise this whole area of diagnosis and C&S will soon be as old fashioned as ether!
Therefore I am urging you to at least contact this man as he will review notes and xrays before seeing the patient. This is the chap that Sonja is seeing, btw. You can have nothing to loose by contacting him and everything to gain as his results are little short of spectacular!
Therefore I am urging you to at least contact this man as he will review notes and xrays before seeing the patient. This is the chap that Sonja is seeing, btw. You can have nothing to loose by contacting him and everything to gain as his results are little short of spectacular!
OP
OP
Josephine, well I have only taken prn antibiotics for dental procedures plus I got an IV infusion when I had a colonoscopy last Fall. But I will gather his info and will take it up when I meet with my primary. Thank you!
\
So glad you got to go to his lecture.
\
So glad you got to go to his lecture.
RestAssured
alpha
Mary, if I were in your shoes, I would definitely contact Dr. Maale. Get him to look over your records at least and see what he thinks! This dr. is brilliant! He is one of a handful that designed the new hinged knee that I will have! I am so excited!
OP
OP
I am starting to understand the frustration that so many people with troublesome TKRs face.
I have been trying to connect with Dr. Maale's office and that's been an interesting endeavor.
At the same time I am amassing all my records to have with me as I go on to the next level of care (first meeting with my PCP, then on to a revisionist).
Well I got the labwork from the rheumatologist who aspirated my knee and ordered a culture on it, but the culture was blank on the form. I phoned the office and they said they have no record of a culture. But how were they able to tell me there was no infection?
There is a WBC ct of 220.0 marked, no crystals, etc.
It seems premature to be consulting with Dr. Maale until I have culture results.
I'm a nurse gosh darn it and I figure I know my away around the system, but this is frustrating and frankly I have steam coming out of my ears.
I have been trying to connect with Dr. Maale's office and that's been an interesting endeavor.
At the same time I am amassing all my records to have with me as I go on to the next level of care (first meeting with my PCP, then on to a revisionist).
Well I got the labwork from the rheumatologist who aspirated my knee and ordered a culture on it, but the culture was blank on the form. I phoned the office and they said they have no record of a culture. But how were they able to tell me there was no infection?
There is a WBC ct of 220.0 marked, no crystals, etc.
It seems premature to be consulting with Dr. Maale until I have culture results.
I'm a nurse gosh darn it and I figure I know my away around the system, but this is frustrating and frankly I have steam coming out of my ears.
bottomshollow
Former BoneSmart staff member
Gosh, Mary, what a bummer!! I can see the steam from here. And I certainly can sympathize with your frustration at this point.
Its so discouraging when you've taken the time and effort to get all your ducks in a row, and, then, the medical folks you are relying on for information they should have at their fingertips appear to be somewhere out in space about everything.
Try taking a deep breathe and try to relax (easy for me to say). And don't give up---keep plugging away. You'll get there hopefully sooner rather than later.
Take care, keep us posted, we care. Judy
Its so discouraging when you've taken the time and effort to get all your ducks in a row, and, then, the medical folks you are relying on for information they should have at their fingertips appear to be somewhere out in space about everything.
Try taking a deep breathe and try to relax (easy for me to say). And don't give up---keep plugging away. You'll get there hopefully sooner rather than later.
Take care, keep us posted, we care. Judy
Ditzzeechick
senior
I've had my struggles with the medical community thru out this process so I feel your pain. Fingers crossed for you! 
OP
OP
There's something about medical uncertainties on Fridays, because you have the whole weekend of the doctors' offices being closed to get in the way. But fortunately I got a call from the rheumatologist's office saying, yes, they have the culture results (!!), and finally got through the scheduling secretary at Dr. Maale's office and laid the groundwork for my doctor to consult him.
It's funny . . . I conditioned myself to ignore this problem because my ortho seemed unconcerned. But the rheumatologist's view is that things are not right, and as I think about it, it's impossible for a hot swollen knee to be benign. Of course there's something wrong, and whatever is wrong is the kind of thing that results in implants coming loose over time, and bone loss. I'd rather be proactive.
It's funny . . . I conditioned myself to ignore this problem because my ortho seemed unconcerned. But the rheumatologist's view is that things are not right, and as I think about it, it's impossible for a hot swollen knee to be benign. Of course there's something wrong, and whatever is wrong is the kind of thing that results in implants coming loose over time, and bone loss. I'd rather be proactive.
bottomshollow
Former BoneSmart staff member
So glad things came together for you after all today. And you are so right about being proactive---who knows your body better than you. Take care. Judy
OP
OP
Yes I would like to vent.
This has stirred up the trauma of last year. ON top of a horrible knee replacement recovery and two further operative procedures, I got addicted to benzodiazepines which has the most horrible withdrawal of all the drugs. I had withdrawal symptoms in no particular pattern for three months followed by four months of tapering and out-and-out withdrawal that consisted of anxiety most hours of every day and never getting more than 2-4 hours of sleep a night (among other symptoms). Plus being responsible for an elder parent.
I was doing a good job of putting all that behind me and moving on, took a month's vacation in a warm climate in January during which I biked and kayaked daily. Yet my quad remained quite atrophied and I made no gains in strength all because of this effusion.
I don't relish surgery again and certainly not a two-stage revision surgery that is often performed on low-grade infections, but I am anxious to move things along, get through it, and get on the recovery end of this long nightmare.
Maybe I'm over-reacting, maybe because I feel like I don't have a champion at the moment although I'm hoping my primary will become one. Or will he say I need to go back and get my ortho to refer me to a revisionist? Sometimes it feels like a game where I don't quite know the rules.
This has stirred up the trauma of last year. ON top of a horrible knee replacement recovery and two further operative procedures, I got addicted to benzodiazepines which has the most horrible withdrawal of all the drugs. I had withdrawal symptoms in no particular pattern for three months followed by four months of tapering and out-and-out withdrawal that consisted of anxiety most hours of every day and never getting more than 2-4 hours of sleep a night (among other symptoms). Plus being responsible for an elder parent.
I was doing a good job of putting all that behind me and moving on, took a month's vacation in a warm climate in January during which I biked and kayaked daily. Yet my quad remained quite atrophied and I made no gains in strength all because of this effusion.
I don't relish surgery again and certainly not a two-stage revision surgery that is often performed on low-grade infections, but I am anxious to move things along, get through it, and get on the recovery end of this long nightmare.
Maybe I'm over-reacting, maybe because I feel like I don't have a champion at the moment although I'm hoping my primary will become one. Or will he say I need to go back and get my ortho to refer me to a revisionist? Sometimes it feels like a game where I don't quite know the rules.
RestAssured
alpha
Mary,
Is Dr. Maale going to do the revision? If he does it will be a one stage revision. He has a different technique from a lot of revision surgeons.:biggrin:
Is Dr. Maale going to do the revision? If he does it will be a one stage revision. He has a different technique from a lot of revision surgeons.:biggrin:
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