Background--how it got "this way"

I remember the day it happened. The day that would impact my life far greater than I ever anticipated was possible.

I was 14 years old and in the last half of my 8th grade year. My best friend, Angie, and I had been walking through town, just jabbering like teenage girls do. It was mid winter, snow was everywhere and it was fairly nippy out. And, of course, we were on the lookout for boys. What teenage girl isn't?

We met up with some boys, and to tell you the honest truth, I cannot even remember who they were or if we even knew them well. All I know is a snowball fight got started. As we fought, the fight went with us, through the streets of town. And then it happened. I had a snowball ready, my arm went back and I let it go. And it went, along with me, straight to the ground. Ever watched television and they show things in slow motion? Well, that is what happened with this.

As I threw the ball, I twisted and my kneecap slid out to the side. I felt my leg collapse, the pain was excruciating. As I went down and my body went into automatic reflex to protect my knee, the kneecap slipped back in as painfully as it had slipped out. I hit the ground screaming in agony. BUT, don't forget there were boys around. And here's another interesting note. I don't remember what happened to them. I don't remember getting back to Angie's house. All I remember was sucking it up in front of the boys. Tears streamed down my face.

A trip to the emergency room was in the near future as my dad raced me there. The swelling had been intense and very quick. They put me in a leg brace, gave me some pills for pain (nothing good mind you because I don't believe they helped all that much) and sent me home on crutches.

To spare you, that was the beginning. After the initial sublex (THAT...would be the official medical term for what my knee cap did), my knee was never the same. I refused to allow a needle to be used to drain the fluid on the kneecap. I adopted the massage method and spent many hours massaging the fluid back into my leg. Physical therapy was tried. Braces were tried. Nothing seemed to help. Every few months, it would sublex and I would hit the floor. A few ER trips to the hospital, more braces, physical therapy and declare me better.

But, over time, the swelling decreased. The pain wasn't as intense. And, it occurred with more frequency. What I didn't know was my body was becoming immune to the pain. Mind over matter I guess. And I learned how to cope. I learned what was liable to send it into a "sublex" action and what wouldn't. I stopped "cornering" quickly. I was still active but very protective of my knee. Occasionally I would have a serious sublex that would send me to the ER. But for the most part, I went on with life.

That sounds like things were normal. And for me, that was my normal. It got to be so normal that I could be walking alone, or just standing still and my knee would sublex and I wouldn't even acknowledge it. I would be grateful that it wasn't serious and just move on. I had given up on help and accepted that this condition, whatever one wanted to call it was just something I had to live with. And what happened in May of 1998 proved it.

I was playing softball and was on first. The next batter knocked the ball far into the outfield. I took off. Well, the batter behind me was a guy, and he was athletic and he was quick. Remember I didn't "corner" well so I rounded second base and that was all there was. My knee sub-lexed, I went down and it was bad. He's screaming, "Get up, run!" He helps me up and I take off but there's a problem. My knee cap is not staying in place at all and my leg is (according to witnesses) flopping all over the place. To be honest, I don't know how in the world I ever made it to home plate. But JB was there waiting. He grabbed hold of me, apparently having witnessed whatever was happening with my knee. The coach was there and people gathered around me. I was crying. They all figured I was in immense pain. And that was the other problem. I felt nothing. After the initial surge of pain, I felt nada. I wasn't crying because I hurt. I was crying because my kneecap wouldn't stay put. Just barely brushing the ground with my toe sent it out of place and to the side.

I was hysterical. JB was asking if he should take me to the hospital. The coach, among others, were rushing around talking about how much pain I was in and grabbing ice, etc. I didn't know what to do. I whispered to JB that my kneecap wouldn't stay in and I showed him by gently touching my toe to the ground. That did it. He looked at me and said that he thought we should go to the hospital. So off we went.

I was afraid I would need surgery. They did an x-ray and gave me something for pain. I believe it was Demerol. Good stuff for childbirth but it didn't help much with the knee thing. They braced me, told me to call an orthopaedic guy and sent me home. I was on crutches for two weeks and in a brace for four weeks. I went to physical therapy once. And that was it. Back to what I knew as normal.

Until I heard about Dr. Pascale. Now he is awesome. He is one of the top 10 orthopaedic surgeons in the United States. A friend of mine told me about him and I figured I had nothing to lose. It couldn't hurt to go see him to see what he had to say. And, technology was such that there just might be something that he could do for me. The situation was such that I couldn't play with my kids and I so wanted to do that. And it was dangerous for me no matter what I was doing. And, I wasn't getting younger.

So I visited Dr. Pascale on a semi-cold day in January 2002. Apparently, he has med students spend time with him as part of their college credits or something. The habit is they come in first, look at you, give you what they think is their best diagnosis and then the doctor comes in and they do this thing together. A learning experience. And what a learning experience it was.....for the student. And the doctor. You see, apparently, my condition might not be rare, but how I had grown immune to the pain and what I could do exceeded what they had ever seen. And the poor college student had all he could handle with me. They seem to think they are very knowledgeable. He found out he wasn't quite as smart as he thought he was.

X-rays didn't show anything wrong....and he (the college student)comes in, acting all smart and educated about knees and said, "Okay, well we'll start you off with physical therapy for a month and then we'll see you back..." I stopped him right there. With tears of anger and hopelessness in my eyes, I said, "Nope. I'm going home. Physical therapy won't help this. If that is all you are going to do, you are wasting my time and I'm not doing it. I'll see you later."

He was slightly taken aback. He tried to push it. I again repeated what I had said. And then I added a little more "umph" to it. I said, "Dude, this (nodding toward my knee as I grabbed the kneecap between my thumb and finger and proceeded to pick it up and move it in every direction before placing it back where it belonged), will not respond to physical therapy. I am not able to strengthen the muscle to keep it place for the therapy to do ANY good. I'm outta here."

At that point, the doctor came in, did his little thing, asked me to straighten my knee and bend it (picture sitting on the bed, swinging the leg out and back). Each time I did, the kneecap would slide out to the side and back in place. Every time. He agreed with me. There was no other option but surgery. (To this day, I love having fun with the college med students....they learn alot from me)

Less than two weeks later, I had my first surgery. He tightened the muscle on the left side of the knee and cleaned out the bone particles I had floating around the knee area, and put me back together. I had nice long incision and 6 long weeks of recovery. And months of physical therapy. Dr. Pascale hooked me up with Debora Horsch. She's great. Months later, I was better but I could tell it wasn't stable. And about a year after the surgery, I noticed something wasn't right. It was growing more unstable and I could feel it wanting to come out.

An x-ray showed a bone spur directly in the center on the under side of my knee cap. I had arthroscopic surgery this time and three weeks off work for it to heal. That surgery was more painful than the first one. But, I had gotten off light since I still didn't have feeling like a normal person would. That called for caution but it was great because I cannot imagine the pain I would have been in if I was feeling it full force.

Around March 05, after having recovered from back surgery and feeling well, I discovered that as I strengthened my leg muscles, my knee was feeling pretty unstable. And the thigh muscle wasn't building up. So I went back to Dr. Pascale. While he didn't dismiss me (I am, after all, the one IN my body), he agreed that a re-alignment was called for and it was our last hope at fixing me. He had refrained from doing it before during the first surgery because he had sincerely hoped that the tightening of the muscle would be sufficient and this was a huge surgery.

We decided that we would do the realignment on Thursday, May 5th, 2005. He would open me up, do some cleaning, and then he would cut the bone, move it over to align the bone and thigh muscle directly over the center of the knee (putting the kneecap squarely in place and muscles lined up so as to keep it there) and screw it in place. It would be over 6 months of recovery time plus physical therapy. I anxiously awaited the day. And I prayed. And prayed. And prepared to accept whatever the outcome would be. After all, this is it. My last chance. And, I figured, I had nothing to lose. It couldn't get worse....the worst it could be was stay the same.

Then the day came...