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Knee & Hip Problems Message Board

Knee & Hip Problems Board Index

Hi...I'm Jenny and we have a lot in common, unfortunately. By 40 I had had 5 operations on my left knee and 2 on my right. Had both replaced at 47. Now I'm 58 and I'm the one who posted the question on the site about bleeding into replaced knees. So I'll share my history in hopes it will give you some ideas and hope.

I injured my left knee as a teen and it wasn't fixed for 2 years because no one thought girls could tear a meniscus(this was 1966). By the time it was fixed I already was bone to bone(had a torn ACL and medial collateral ligaments too). Then they tried doing something called a tibial tubercle transfer for a lateral tracking kneecap and that didn't work. I was told I needed a total knee at 24 but couldn't have one until I was at least 40.

At 37 I injured the right knee and started having scopes on that one as well as more surgery to keep the left one going. Then age 40 struck and something changed. I had always recovered from knee surgery very quickly and well but now, I had massive swelling and pain and recovery took a long time. Even a simple scoping to clean it out was a big deal now. Doc said it was my age and that every time they went in, the knee got more and more "reactive" and didn't like being touched. It was like my knee got old but I wasn't.

When he did #6 on the left knee all hell broke loose. I swelled to the point of getting blisters on my thigh. I couldn't walk at all...and it was just a scope. Took months to recover. My doc warned me that the next step would be a knee couldn't take anymore. But the right was worsening at a fast rate....had 2 more scopes over the next 4 years. Then it started swelling like mad and deteriorating very fast. It took me 34 years to take my left knee from fine to replaced but it only took the right knee 10 years to do the same.

I toughed it out from 40 to 47 using canes and crutches and saw a rheumatologist for treatment with replacement joint fluids and cortisone shots and braces and the whole 9 yards. But at 47, I went through the joint surface of the left knee and it was TKR time. While going through testing prior to surgery, I did it with my right knee too. So 11 years ago, I had both knees replaced at the same time.

It's been heaven for 11 years. No pain. No swelling. No taps. No scopes. Then all of a sudden this year I start bleeding into my knees again. They tested for infection but it was negative. However, I found out that culturing joint fluid is only positive 61% of the time. So I'm going through test after test to try to figure out what is wrong now. Like you, they've tested for everything they can test for using blood or joint fluid or x-rays. I'm questioning why they don't do a PET scan since they can't do an MRI and CT's just don't show enough with the prosthesis.

One thing I came upon is a disorder that causes growth of the synovium and bleeding into the knees called Pigmented Villonodular Synovitis. Might want to do some exploring on the symptoms and mention it to your doc. Rare...although I picked up a sense that it might not be that rare at all but just never checked out. Takes a biopsy of the synovium to diagnose it. One of the very few disorders that causes blood in the knee joints. If I have it, it would be a first.....only 1 recorded case with replaced knees and that was with a partial replacement.

But what I can tell you is that yes, at 40, your knees are old and tired and the multiple surgeries have inflamed the daylights out of it. Recovery will be slow but you can recover. And the really good news is that if they don't, replacement knees are great! Until I ran into this problem, they were wonderful.

Why some of us end up with these major "old" knees at 40 is a mystery to me but it happens and we have them. Treat them like they are the most precious things in the word right now...they are. I did a lot of icing. Ace bandages to compress the fluid and keep them protected. I used crutches and canes. Pain meds as needed...those suckers hurt! I broke my neck 3 years ago and had major surgery. After wards they asked how much pain I was in....I said 3. Why so low they asked...I've had 14 knee surgeries...this is nothing! You are so right!

I'm here if you have questions or need a shoulder to vent on. I'm actually waiting to be tested for possible allergies to the metals in my knees....but I think it will turn out to be a low virulence infection. But first we rule out everything else! And I thought I was done at 14 surgeries.

Hang in there...this too shall end.

gentle hugs............Jenny
Hello Jenny,

It is so nice to meet you, and I truly appreciate you taking the time to reply to my post.

I too have tried injections to replace joint fluids, but they really did nothing to improve the situation. Since I had advanced cancer six year ago, and multiple surgeries (including hysterectomy), extensive chemotherapy, radiation, etc., my body reacts to things much more different than before. For one thing, having the chemo and hysterectomy threw me into medical menopause, and I have osteoporosis at a very young age. In addition, I can no longer tolerate steroids, so that is not possible. If I try to take steroids for the swelling, my heart rate speeds up, I sweat, flush, and break out in hives. I cannot even have cortisone on my skin; I break out in hives immediately. This is a problem, since I think a shot of steroids in the joint may be of benefit to curtail the swelling, but it just is not possible. When I was in the hospital a few weeks ago with the hematoma, the nurse said that after chemotherapy, the body's ability to heal is diminished greatly. I have never had problems healing from surgery before, but it is like my knee is ticked off, and anything we try to do just makes matters worse.

I went from working full-time, teaching for a local college part-time, and taking classes toward a second Master degree to sitting in a chair. I am still working on some online classes, and I am grateful for the distraction. I am so used to being a busy person, running head first through life, so this is especially depressing for me.

Something you said reminded me of another point. When the fluid was aspirated from my knee three weeks ago, the preliminary report noted some bacteria was present, but when they tried to grow the bacteria over 72 hours, nothing would grow. The final report came back simply showing a very high red blood count, and a low white blood count. The final report would certainly point to no infection. My knee was drained again a week later, and the fluid analysis was once again fine (no infection).

This business with the thickening above the kneecap, and the area where the drain was is troubling. It feels like it is hampering my abiltiy to bend my knee past 60 degrees. When the PT tries to push it further than that (the pain is extreme), and you can see how tight it pulls that area (feels like something is going to rupture). Also, if I stand for more than a few minutes, my knee and below turns a bright purple. I feel like it need to be drained again, but everytime they introduce a needle to the joint, my knee reacts poorly, and I am risking an infection.

My surgeon talked with me a little about TKR before this last surgery, but I still have some good cartilage, so I do not feel ready for that just yet. TKR is a big decision, and I am not ready to make that kind of move yet. I feel like once I do that, there is no going back if something goes wrong (and things just keep going wrong for me).

Have you ever had your knee manipulated to break up scar tissue? I am afraid that will be necessary, since it seems likely the thickening is in fact more scar tissue. I was told that swelling and fluid in the knee causes scar tissue formation, and I have had no shortage of either.

I have a good surgeon who makes sure I have good pain relief medication, but that is also worrisome. I have to take them daily, but it just cannot be helped right now. I have been on some sort of pain medication since November, and have talked frankly with my surgeon, and the physican assistant (who I work with a lot, since my surgeon is only in the office one day a week). The physican assistant is wonderful, capable, and I am very, very comfortable with her. They assured me that when (if) things begin to improve, they will gently take me off the pain medication, so I should not worry about that right now. I try not to worry, but a person must be open with their physican about this, and take the medication as prescribed only. Without the medication, however, I would be unable to walk to the bathroom, or attend PT right now.

I am an avid gardener, and I was so hoping this last surgery would offer the relief I had anticipated, and I would enjoy planting my garden this year, but unfortunately, that is out of the question. My mom and husband are wonderful, and will plant it for me. However, they have been through so much with my health over the past six years, and I cannot help feeling guilty to put them through more challenges with my health.
Hello Pauline,

I have not had a TKR yet. I am going to copy a bit of what I originally posted about what is going on with my kneee. I have had 4 knee surgeries in the past 16 months. The first was in January 2009, for a meniscus tear, and a little buckle of synovitis. Should have been pretty straight forward...right? No so much. After that surgery, my knee kept swelling, and continued pain. My surgeon told me I must be getting old (was only 39 at the time), and sent me to a rheumatologist for evaluation. Many, many blood tests were done, and nothing found by her. However, she felt I needed another scope on my knee, and after my refusal to see the same surgeon, she recommended a surgeon who runs a knee institute about 45 mins away. I had my 2nd scope in November 2009, and he found very extensive synovitis, and a plica. He removed both. The swelling and extreme pain continued, and fluid was removed from my knee 9 times from November to April. MRI, CT scan, and xrays revealed a kneecap tracking problem, lots of scar tissue, and worsening arthritis. Another scope was performed in early April, lateral release performed, and scar tissue was removed. I had scar tissue all over my knee, all the way to the tibia. When I woke from that surgery, the pain seemed extreme, but I thought I just did not understand how bad it would be, so I tried to muscle through. 6 days after surgery, my knee was about 3x's the size of the other, I was bruised all the way to my hip, and the pain was so bad, I could not move my ankle, stand, or walk to the bathroom without help, and bursting into tears. Now, I will tell you, I have battled advanced cancer, multiple surgeries associated with the cancer, so I am no all. This was the worst pain I have ever experienced in my life. I called the surgeon, and when he looked at my knee, he immediately admitted me to the hospital, and had to perform emergency surgery for a large hematoma in my knee joint. It took him over two hours to remove the blood clot, and I was in the hospital for a few days with a drain in my knee. Since that time (April 17th), I have had blood and fluid aspirated from my knee three times, and the knee is still terribly swollen, has more fluid in it, I cannot bend it past about 90 degrees, despite the extensive efforts in PT, and I have horrible sharp pains in it all of the time. It appears the scar tissue is back, and is wreaking havoc in my knee. The top of my knee (above the kneecap) is thickened, and is a good part of the reason I physically cannot bend it (it will not bend). Besides the horrific pain when I try to bend my knee, it feels like something is blocking it from bending. I have a large palpable band of hard scar tissue on the lateral side, and one of the scars on the medial side, as well as the drain scar on the lateral side are both sunk in, and alternate between throbbing and having sharp pains all day long.

When I first wake in the morning, I have a small window of time to do a couple of things before the swelling sets back in. By early afternoon, I cannot even put weight on my knee, and the swelling is extreme. When my knee is measured and compared to the good one, it is around 2 1/2 inches larger from my upper leg to just below my knee. In addition, my lower leg, ankle, and foot swell daily in response to the knee swelling.

I have my doubts about whether or not the manipulation will work, since my scarring may be deep in the knee, and he may be unable to break it up this way. My knee is so touchy, my PT really has not been able to do much to it at all during therapy. Even light soft tissue massage causes it to swell. The surgeon took me out of PT until after the manipulation, since it seems to making matters worse. The surgeon said that the more the swelling is down during the manipulation, the better, but that will be impossible. Just getting ready to go to the hospital, driving there, and walking in will cause the swelling to shoot out of control.

I am keeping my fingers crossed, but have a feeling he will need to go back in to correct the situation. I think that the complications I experienced after surgery, and subsequent inability to start PT right away let the scar tissue take hold again. After he removed the hematoma, I was not cleared for PT for about three weeks, because the swelling was so bad, it was tearing the drain hole open in my knee, and would not stop bleeding for about 2 1/2 weeks. I think that was enough to set things in motion with the scarring again. In response to the scar tissue problems, I feel like the synovitis is back again too, and I wonder if the manipulation will make that worse. The synovitis will likely need to be cut out again, as it would not correct itself in the past.

I understand what you mean about wanting so badly to do the things you enjoy. I cannot do anything I want without extreme pain, and swelling, so I sit here feeling depressed. Having joint issues like this is certainly a quality-of-life issue, and we all went through surgery (or mulitple surgeries in most cases) in an effort to gain our quality-of-life back again. It is terribly frustrating when the surgery is not successful.

Keep your chin up, and keep me posted on your progress. If you need a manipulation too, we can compare notes.

All my best,
Hi Jenny,

I cannot believe a raccoon chased you like that! I bet you were moving faster than you knew you could, or that you should. My husband was out watering my flowers on Sunday, and called for me to come outside. He thought a hummer was in my butterfly bush, but upon closer inspection, the "hummer" had a proboscis, and the body was shaped like a lobster tail? It was also much smaller than a hummer, but makes the same distinct flying movements as hummers. I looked it up on the internet, and it is actually called a moth hummingbird. It is so cool, we have been seeing it every day since Sunday, around 8:00 in the evening....really cool!

I am getting nervous now about the MUA on Monday. It is scheduled for 7:30 in the morning, but I have to be at the hospital at 6:00. I never can understand why we have to be at the hospital so blasted early?! It literally takes no more than 30 minutes to get patients ready to go, then you just sit and cool your heels until show time. The hospital is about 45 minutes away, so I have to leave my house a little after 5:00, which also means I will need to get up around 4:30 in the morning. I keep worrying that the MUA will not work, or make matters worse, then I will be right back where I began. However, I have to try anything to improve this terrible situation with my knee; it is literally making my life kinda crappy. Everything I try to do results in more pain and severe swelling, so I am desperate for a resolution. Sometimes I think I would be better off with a TKR at this point, but since I tend to scar down, I wonder if it would cause more problems in the short and long term?

I cannot believe your surgeon has turned into such a different person of late. I am always horrified when I hear stories like this. It is like they give up if a patient has continued problems, and it leaves the patient feeling hopeless. My first surgeon was like that, but my current surgeon is really great (so are his PA's and staff). They are prompt, capable, courteous, and sharp.

I will be waiting anxiously for more news from you on what the next move is to help you.

It is really hot here too, with the heat index around 100 degrees for the past several days. My husband is a roofing contractor, so he has been really dogged out with the heat. They leave really early each morning (around 5:30), to beat the heat, and come home earlier than normal. Poor thing, I worry about heat exhaustion, and heat stroke when he is working in heat like this. When he gets home in the air conditioning, he literally collapses from the temperature difference.

I am looking forward to your updates.

All my best,

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