Having more joint issues than usual...please help!

[CrazyRed06]

I'm completely at a loss, so I thought I'd come here to see if anyone else is possibly having similiar problems and might be able to tell me what the problem is. I've had PA for 4 years (I'm 26) and I haven't had any issues until recently. It's a long story but here goes...

In November 2006, I was visiting my brother for the weekend and when I stay there I sleep on a mattress on the floor (he has a small house). I got out of bed and felt a pop in the inside of my left knee. I was surprised by it but didn't think much of it. My sister-in-law and I went to the mall that day and I was fine. It didn't hurt or anything. Well, the next day on my way home in the car (he lives 130 miles away), I shifted position to make myself more comfortable and I felt that pop again on the same side. When I got home, I checked my knee and it was swollen and it did hurt and it was kind of hard to put weight on it.

I ended up going to urgent care a couple of days later and they put me in this monstrosity of a knee immbolizer (I'm only 5ft 1.5in, that thing was huge on me) and a script for darvocet and sent me on my way after a negative x-ray. The doc said that maybe I should consult an orthopedic surgeon because I might have a soft tissue injury. I wore the brace (and nearly killed myself twice walking in it) for a couple of days and since it was so huge, I stopped wearing it and things seemed to calm down. Well, in May 2007 things started flaring up again and I decided to see an orthopedic surgeon. He did another x-ray and it came back negative and ordered an MRI.

The radiologist said in his report that everything was normal. Well, the ortho didn't think so. He said that I might've had a medical meniscus tear and ordered PT. He didn't want to perform surgery unless it was necessary. I did the PT for a month and it didn't help so I went back to the doctor and he decided to proceed with an arthroscopy. I had it done on 8/10/07. I was told that the plica in my knee was serrated and he smoothed it out. A plica is a band of tissue inside the joint. It looks like a thick black rubber band. I went home and I thought everything would've been fine. WRONG!

I was doing fine in August, early September was fine, mid to late September I started having range of motion problems. I had been doing all the exersices the PT told me to do at home. In October, the doctor ordered more PT but by that time the scar tissue was so thick it was no use. The doctor ordered another MRI but he said that everything was normal. He wanted me to come in for cortizone shots and to work my knee out until the scar tissue "calmed itself down". I was so upset, I sat there and cried. For those of you who've had shots...they only last 2 weeks and I'm extremely afraid of needles so there was no way in hell I was going in there every 2 weeks and spending all that money that I didn't have.

I ended up having to switch orthopedics because he had abandoned me. I took both MRI films to see him. But the problem was, I couldn't get in until January. I had to wait 2 months. I was in extreme pain and there wasn't anything I could do about it. And I had started school for massage therapy in November and this knee is affecting my education and my job.

I saw the new orthopedic in January and he wanted to take me right into surgery. He wanted to perfom a closed manipulation, which is wrenching my knee to pop all the scar tissue, and another arthroscopy to make sure nothing was torn. I had this done 2/1/08. Nothing was torn and the scar tissue was popped. He also did a lateral release of my knee cap since the tissue on the outside was so tight due to all the problems I had been having. I was up and around the next morning...I was barely using the crutches. I had my first post-op visit 2 weeks later...and there was still a block in my knee. I'm assuming it's scar tissue. My knee cap is moving side to side instead of up and down and I have a brace for that, a patellar tracking brace, but it's so uncomfortable. I don't know how I'm supposed to wear that thing for 2 months.

I'm in PT again...I had my eval 6 days after my surgery...and it's not doing any good. The PT isn't doing any range of motion and he wants me to ride a stationary bike to pop the scar tissue...but he wants me to pop a couple of narcotic pain killers and risk losing my job before coming to my session. He's telling me that my flat feet are causing my knee problems. I told my doctor all of this and he told me that I shouldn't be listening to them...but to listen to him because he's my doctor...which I totally agree with.

I'm probably facing another knee surgery. I have another visit with my orthopedic on Friday. I asked him what was causing my problem and what my problem was to begin with and he doesn't know. He has all my medical records and he doesn't know. The first one didn't know either. Maybe one of you can help. I'm so sick of not being able to do anything or go anywhere. I usually have to sit out at school because I really can't do much with my knee being in the position it's in now. I'm in pain all the time and my knee has been swollen for nearly a year. May will be a year.

[easydoesit]

What does your rheumatologist say about it?

PA is a weird disease and it seems to me that sometimes rheumatologists are the only ones who can make heads or tails out of what is going on with us.

[CrazyRed06]

I faxed him all my records too so he could be on board and I saw him before I had my second surgery and he didn't really know what the issue was either. He didn't want me having surgery the second time unless it was necessary. According to my ortho, there was no way I could've gotten along without having the scar tissue popped.

[nyoki]

Hi and welcome CrazyRed. I wish I could help you but I have no clue. I'm so sorry to hear about your troubles; all of us in one way or another have been through something like this. A whole bunch of I-don't-knows and misdiagnoses' before getting some real relief. Unfortunately, it takes time (sometimes, a lot of time). I wish you all luck.

[1WeekAtATime]

Wow you poor thing- you've been through it all! I'm happy (in a way) to see someone else who was first affected at 22-ish years of age. I had a situation in which I'd been overrusing an already inflamed knee and had to use crutches and see a knee specialist, get an MRI, the whole deal this past summer. I don't know how much I can really help, but I wonder if your rheumatologist or a knee specialist are involved. Their jobs are more specific to your arthritis and your knee parts mysteriously causing trouble with little results on tests.

I also have not had to have surgery yet, but it sounds like a very major deal, and I say why not get a second opinion or seek out a rheumy or knee doc to help?

[CrazyRed06]

Actually, this ortho that I'm seeing now IS my second opinion. And I've been seeing a rhumetologist for 4 years and he doesn't know what's up either. I did some research on the internet and I did find something that could be what's going on. It's called chondomalacia (if I spelled that right...) patella. It basically means that the cartlidge behind the kneecap has softened usually due to trauma. Well...after my first surgery I did have times where I did slip and fall due to joint instability (since I had been having weightbearing issues before the August surgery) and with hyperextension. So, that does make sense. Now all I have to do is convince my ortho that could be the answer.

He said he's committed to fixing my knee at any cost.

[Re]

Hey CrazyRed, glad ya found us and it sucks that ya had to. I have just had my second bender surgery for patella chondromalacia with a leteral release. It is tough when you have and injury and go for a long time with out proper care or dx. I to have such severe knee injuries from year of soccer, track and college volley ball. It got to wear I just wanted to have both legs amputated. I still have that type of pain but not every waking moment. It is several days a week. Make sure that your MRI was clean, not all MRI's have clean images. Ya might need one with contrast since you have already had surgeries on that knee. It will show scar tissue and any other soft tissue problems that are not always clear with a regular MRI. I do hope you will get some good help. This disease is a crap shoot for docs.
hope these help
http://www.arthroscopy.com/sp05032.htm
http://orthopedics.about.com/cs/patelladisorders/a/chondromalacia.htm

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[CrazyRed06]

I had the 2nd MRI in November and the doc said that there was a bunch of scar tissue. The radiologist who read the films said there was a tear in the meniscus but the ortho didn't see it but he still wanted to do the 2nd arthroscopy just to make 100% sure before doing the manipulation for the scar tissue. It's ironic since the same radiologist said the 1st MRI was negative and the 1st ortho found the serrated synovial band.

In February, the ortho went in with the scope and said nothing was torn. I see him again tomorrow and he'll decide what he's going to do. Personally, at this point they may as well replace the whole freaking thing. That's how sick of this I am.

[Re]

It is nutz how we can be shifted from one thing to another. The first doc I saw in 06 said nothing was wrong with my benders. I could not even walk. Every joint I have hurts every day. I have such bad knee pain but 4-5 days out of the week the are so bad, I get dizzy and just want to spew from pain. I know wear you are coming from. You made need to do what I did. I kept going to docs until I found one that was not a tight a$$ about being agressive. Ya just got be your own health care advocate. Tell the doc exactly what you feel. You pay him to do a job so if he does not you may need to fire him and get another. I went to 3 before I found one that understodd this disease and was willing to find out was wrong. I really am sorry for your pain. I popped some scar tissue this weekend on the left knee and good golly miss molly, it hurt so bad. Felt like something tore or sliced or ripped, etc. I do know how you feel. Talk to him about a new knee. If your gonna be in pain might as well be worth it. Age is another factor. They don't like to do them in us younguns cause they wear out 10-15 years. Also I have nerve damage and probably have more since the bender surgeries. That can cause pain too and the ability to have less function.
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[CrazyRed06]

And he has a better bedside manner than the last one. I work for the hospital system he operates out of so I hear things from time to time about the doctors. And I've heard wonderful things about this ortho. I do have a lot of confidence in him and he said he would figure it out and fix it at any cost.

[Re]

so glad you have a doc committed. I should be. I like that soft walls. It will get better, it may not be as good as new but better is better than what ya have know.
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[CrazyRed06]

He wants to do another closed manipulation. I've already scheduled it for 4/4. I'm not thrilled since this going to be my 3rd surgery in less than a year. It really sucks.

[Re]

I have had two surgeries in 7 weeks. I loved it cause I got some really deep beauty sleep. Just look at it that way and also think it is the start to what may just very well be less pain for you. It will be okay.
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