Bilateral TKR Halfway there...transitioning issues<<

[mpj200]

I think a second opinion is a very good idea. How does your OS know you have arthrofibrosis in both knees? Is there test for that? Did you have a MRI? It just seems like it'd be difficult to 'see' scar tissue.

Based on the condition of both knees and what I am telling him. I don’t think there is a test that shows Arthrofibrosis? But based on what I’ve read and what he has said, I believe that’s what it is. I don’t have nickel in my knees so there’s no allergic reaction. My knees feel very strong. I just have a massive grip on top of them that never goes away. It’s 24/7 pain except when I sleep.


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[Dzina]

So sorry to hear you are still having your problems a year after you BTKR do hope you can find a solution and a decrease in your discomfort in the near future

 

[KarriB]

Let us know what your second opinion has to say.

 

[Jamie]

I'm not surprised that your surgeon doesn't deal with this problem. It's something that you'll need to research to find a specialist in this area. There are a lot of factors to having a successful recovery following this surgery. I hope you can find one of the surgeons on that list to talk with. That would be a good first step.

 

[Josephine]

How does your OS know you have arthrofibrosis in both knees? Is there test for that?

Like a lot of soft tissue and collagen conditions, the only way a doctor can diagnose it is by a process of elimination. He takes a history, does some routine tests and takes some xrays. These will exclude the more basic conditions. Not an exact science but it's the best they can do.

 

[mpj200]

That’s basically it in a nutshell. Process of elimination. When I research Arthrofibrosis, and look that the indicators and symptoms, they match up. My frustration is that I have been telling my OS this for 9 months. Up until last week, they kept telling me that if I still had these issues at a year, they would scope out the scar tissue. Last week he changed his tune and said he wasn’t sure if scoping was the right move. And he suggested a second opinion. I had already planned on that anyway. I hope to find out more Friday when I see this Dr. He just moved to a practice in Charlotte and he came from a practice that specialized in problem replacements. Looking forward to finding out more Friday.


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[sistersinhim]

It sounds like you're headed in the right direction! Be sure and let us know what you find out Friday. This is a learning experience for a whole lot of us!

 

[jaschembra]

Yes, let us know what the 2nd opinion doc thinks. That's all I can figure is going on in my knee - My OS has on each visit casually/in passing mentioned there could be some scar tissue in there (I know that with other minor surgeries, my body tends to build scar tissue and I know PT broke up some scar tissue below the knee cap at 9 months) and I keep thinking maybe my tendons are rubbing on the scar tissue which is causing the swelling and some of the pain spots. I'm about ready for a 2nd opinion, but my husband thinks I should give it just a bit more time, he says I should "trust my OS because he is a very good OS". I will for a couple more months. You asked and yes, I can still get that tight clamp feeling. Often, it comes across the back of my knee and runs down into my calf. I've been taking Gabapentin for about 5 weeks (trying to give a "reset" to my pain nerve) and it has definitely helped. Hasn't made the knee feel good yet, but it has helped.

Wishing you well with your visit.

 

[mpj200]

Had my second opinion. This surgeon, who specializes in “problem” replacements, did not seem to think that my arthrofibrosis was the source of my pain. He said I just had “painful knee replacement” which is unexplained pain after healing should have already occurred. Basically they can’t explain what causes the pain and that a small % of knee replacements have this. He did agree with my primary surgeon that more surgery was not the answer.

He ordered some blood test to rule out infection and is comparing my X-ray progressions to see if anything has shifted. Meanwhile, I’m trying to find a 3rd opinion. I met with a medical mal practice attorney, who suggested I see a specialist at Duke Univerity.

I feel like someone poured melted plastic on both knees and it hardened, digging into my knees. It’s all around the top of both knees (bi lateral TKR 2.7.17). And it’s constant when I’m on my feet. If I’m doing more than standing... even just showering and moving about...makes both knees feel like the plastic hardened more.

It’s a very tight feeling, even though my flexion is close to 120. My knees do bend. They just feel like a vice grip is on them. Both of them. They both feel EXACTLY the same. Same discomfort and pain level (3-4) on BOTH knees.

I can feel something inside them that feels stretchy and a little sticky.

Up until my 12 month follow up, I thought it was scar tissue and they would scope it out if it was still there after a year. That what my surgeon kept telling me. Then at my 12 month follow up, he didn’t think more surgery was the best idea and he asked me to get a second opinion.

I’m very frustrated. Currently two Dr’s have told me basically I have to live with this. I still spend about 3 hours on my ice machines. Both knees are worse than before the replacements. The surgery, at this point, was a total disaster. I deeply regret it. Esoecally doing both knees at the same time.

Does anyone here recognize any of this or have any symptoms that sound like this?

 

[KarriB]

I didn’t have the type of pain you are describing. I did have pain upon walking or standing for longer periods of time until this last year. I put the pain down to my weight and began to walk every day in hopes of losing some weight. What I found was that the more I walked the less pain I had. I built up slowly, walking just 10 min two times a day and adding 5 min every week. I did lose some weight, but I built up the muscle around my TKR in a way that PT never did and now I take a 40-45 minute walk everyday, totally pain free.

 

[SusieShoes]

My experience was closer to KarriB’s than yours. Walking loosened my knee stiffness and it’s almost completely gone at this point. Your stiffness mystifies me. I’m not convinced by the “it’s just a painful knee replacement” diagnosis. I mean, yes, some people do end up with less satisfactory pain results than they’d like. That happens. However, you say both knees are worse than before surgery, and, well... I’d say get that third opinion! If necessary, travel to the top revision specialist in the land, or the world, to find out if there’s a solution for you. Why live with this pain and disability if there’s a way to make your life better? That’s why you had BTKR in the first place and you should not give up on that goal.

 

[mpj200]

I’m definitely getting a third opinion if nothing shows up in these last two test my that my second Dr is doing.

He’s doing blood work to check for an infection and reviewing all my X-rays post op. He is a revision specialist from Philadelphia that just moved to my area.

I have no idea if an infection is a reasonable possibility. But I do have chronic sinus infections. Had one a month before surgery. But they told my sinus infections were not a risk as far as going to my implants.


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[jaschembra]

I don't have as much pain as you describe, but I do have a 2, sometimes 3 pain level regularly when I've been walking or standing any length of time.... I had such chronic pain prior to surgery (and still feel that I do - definitely in my natural knee) that, at my 1 year, my OS wanted to try and "reset my pain nerve". He described it as firing so often that it gets to where it doesn't need anything at all to set it off. He put me on Gabapentin. Since being on it, I haven't had to take other meds like anti-inflammatories or acetaminophen. The stinging pain went away, but what feels like inflammation pain is still there. So now he has added a low dose Prednisone to the mix to try and keep my internal swelling down. It also seems to be helping a bit. I feel like I am doing more exercise and like Karri said, it seems to be helping the knee joint. I'm also using a roller more often on my hamstrings and sides of the leg... I say all this because I too have gone well beyond the time frame of what a lot of people do and they have no pain. My OS is very conservative. He is against cutting out scar tissue (as my ROM is functional) because he said it tends to grow back. I think you are very smart to seek out another opinion; however, I also would not be wanting someone to go in there unless they were 100% of what the issue was. I too will seek a 2nd opinion in a few months if I'm not better. I need a plan for the fall/winter when I'm sure I will need the other knee done as it's past due! Good luck.

 

[Rjack09]

I’ve had some soreness issues that are still there most of the time when I’m walking mostly downstairs. I’m 13 months out and and way way way better shape, of course then pre surgery
For the last few months, while I’m driving in my truck I would work my quad just above the knees with a yoga ball, which is like a hard racquetball ball. It kind of helps, actually did noticeably help loosen up that muscle and made that soreness diminish. Anyway after a year I’m figuring these muscles should be pretty much healed by now and I shouldn’t have this damn soreness issue. So I took those yoga balls kind of worked out over the quad muscle just above my knee looking for little sore spots. These were easily found, and man I worked these hard, really digging down going side to side etc.
This has made a tremendous difference, and I’ve been doing this for about a week and a half now where I really ramped up the intensity. So for me, I’m convinced I’ve had some scar tissue issues, and the above really seems to be helping me. It’s kind like a deep tissue massage thing, have you tried this?

 

[mpj200]

I used tennis balls and I have a roller as well. Doesn’t have an effect. The thing about my knees that trips all the Dr’s up is that my issue is constant.

Something has invaded both my knees. They both feel identical. And I can feel the grip on them at all times. Even when elevating them. It’s less pain and more comfortable when I elevate them, but this feeling is always there. It gets a little worse as the day goes on.

But it’s with me the second I wake up and hit the floor in the morning.

It feels very physical. Like something is clamping down into my knee. In a circle around each knee.


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[KarriB]

Let us know what the tests say.

 

[mpj200]

Blood test came back negative. Very happy about that. The 2nd opinion Dr is taking X-rays in May and then comparing all my X-rays since my surgery (will be 15 months post op at that point) to see if there are any problems with the implants.

Since I’ve had the exact same issue on both knees since about 3 months post op, and my OS took X-rays all through the process, I’m
not expecting much from my next appointment.

This leaves me where my OS suspected. Arthrofibrosis. My 2nd Dr does not think this is what is causing my pain. I’m pretty sure I will be looking for a 3rd opinion in June.


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