Does anyone have kneecap dislocation problems like me? This is my Story.
Posted , 20 users are following.
Hi, my name is Madge and I am 18. But my knees are not what they should be for my age. They have scar tissue all over them both internally and externally and sadly they stop me from doing a lot of the things that I really want to do! 
The problem is that my kneecap rests too high on my leg- I also have loose joints to begin with- and the result is unwanted and constant pain when I try to do any activity (longboarding, climbing stairs, etc.) that requires a lot of knee power. Among these problems however, the WORST is that my kneecap slides out of place when my leg, knee, foot, ankle is moved in a way that causes my patella to 'slide' or 'pop' out of place. This happens on both knees and is the worst in the winter because of ice and other slippery surfaces plus the addition of the cold weather which seems to make my knee problems worse. This started happening to me a few years before puberty and has plagued and haunted my anxious mind for years.
At first, my knee problems weren't too bad and when my kneecap popped out of place, it would usually pop back when I straightened my leg. It also didn't occur very often either. I honestly don't remember specific times that my knee went out very often, and when I do it's usually because it was something I never wanted to happen again.
I've always been in ballet. I started when I was four or five and didn't stop until I was about 15. I always had problems in class, but my ballet teachers learned what was happening when I fell and a few tears and an ice pack later I was usually good as new, and the injuries weren't too terrible either. But, one year during my ballet school's annual Nutcracker performance, I was taking my position for our first dance and when I went to step on my leg, my kneecap slid out of place and I fell on it while it was still out. It was terrifying. The way I had fallen caused my patella to stay out of place for longer than normal. And I couldn't walk. Along with the humiliation of falling on stage, I was haunted by thoughts of something even worse happening. Long story short, I required physical therapy and this terrible incident took months to overcome both mentally and physically.
This was the worst it ever was.
But middle school was equally terrible. I wasn't very pretty, or popular and everyone called me weird and strange (and I was hehe). I'd also lost my closest friends to the popular people... But that's another story. It was a really hard time for me and it was a really, really bad place too. Even still, I did really well in my classes, but of course, my knees embarrassed me on a regular basis and the kids would laugh whenever I fell because of my kneecap. This made me cry a lot. No one understood why I fell or how painful and limiting my problem was.
High school was, er, nah, I don't need to tell you. The main idea is that this has been a continuous problem that is unrelenting. And over the years the pain and swelling is more easily provoked by everyday activity. When people laughed at me, it made me feel furious and defeated because I knew that those people laughing at me were in perfect health, no joint problems, no sympathy. Not that I wanted sympathy. I just wanted people to understand that it was out of my control and agonizing.
The reason I decided to write this was because I fell in my dance class a few days ago and kind of had a minor break down because of it. I felt the weight of this burden bearing down on my heart, I just felt helpless, hopeless, like I could never accomplish the things I wanted to because my knee problems limit me so much.
I'm writing this because I'm sure that someone out there has a problem similar to me and needs someone to understand how hard it is. And I'm hoping that after reading this, even if you can't relate to my predicament, that you have more maturity than my middle school buddies and make sure that people are okay before pointing and laughing.
1 like, 22 replies
melanie_92138 madge198
Posted
Hello Madge198,
I'm writing this as I feel your pain.. I really do..
I don't remember much of first school life... middle school was a huge embarrassment for myself... spent god knows how many times been carried off the football pitch for my knee dislocating.. highly embarrassing and extremely painful.
It got to the point where I would get a note to be excused from pe lessons.. thought brill no pressure on my knee... nope It came out sitting down walking up the stairs even walking!
I'm now 28 and still have the same problem.. after many exercises to strengthen many Drs visits etc I still have the embarrassing moment of crying out in huge pain whilst my children wonder why and my partner calms me...
I'm an active person I'm always walking and going to the gym Yet still out it pops to have a little wiggle...
sometimes it goes back in straight away sometimes it likes to hang out for a bit and be like yeah I'm staying out for a bit to cause even more pain...
my knees move in a strange L shape when bent up and down.. Iv mastered the duck walk at the hospital and Drs even holding my gown in place so my bare skin of my ass isn't shown.. oh yes isn't it fantastic?
My mother has passed this to me I'm ever so grateful.. she suffers worse than me but not with her knee but other health issues so least I'm healthy I guess.. (for now) she had to give me something in life...
Now my 5year old complains of a sore knee.. that was fun explaining to his teachers he may have the same problem...
hopefully not as we know that pain is not nice
I hope to get mine sorted soon I hope this time my dr reads my whole file instead of oh you dislocated your knee do this that the other... heard it all before.. bla bla
I hope you get some sort of response that offers you huge help..
X
sherry64056 madge198
Posted
I am sorry that you are having to deal with other children making fun of you. I am 48 years old and have suffered from knee problems since I was 13 years old. I have had several surgeries and at times my knee would feel better but never would the knee cap be stable. I was a cheerleader, drill team and a cross country and track runner. Well I was until my Dr told me I could no longer do these activities. I dropped out of school the end of my sophomore year because I could no longer participate in sports and hated school anyways. I went back and got my GED and went on to college years later.
My last surgery 2 years ago was to repair a tear to my meniscus, clean out arthritis and found out during surgery that I had torn my ACL at some point and it had healed on it's own.
Now I am 48 and looking at a TKR for my bad knee next month. This is due to pain a 7 out of 10 most days, swelling and not being able to make it all the way through the grocery store without my knee popping.
My doctor and a second Doctor's opinion say that is the only option that I have left for that knee. Due to me being so young (they like to wait till people are in their 60's or 70's before TKR) I will be looking at needing another TKR around age 60 and another around 70 if I live that long.
My advice to you is to listen to your doctors and do what they say, wear your braces if you have them, and do all you can to save your knee for as long as you can.
I wish you all the best. Sherry
lilredd madge198
Posted
Dear Madge, Yes I have a similar problem. My name is Dayle and I am 18 as well and I have bad knees too. not as bad as yours, but still bad... when I was in middle school I discovered the problem in gym class. I dislocated my right knee running backwards. I freaked out and mom took me to a doctor but they didnt do much just gave me meds and a knee brace and a doctors note. however a friend of mine gave me their old crutches and they work for me. Later on after my knee healed I dislocated the other one on a patch of ice at school and everyone made fun of me for it, along with many other things. In high school I dislocated my right knee 2 major times more before going through physical therapy. it helped a little I guess.. as I only had minor pops in my right knee after that. my mom thought my knee was popping because I was growing faster then my joints could handle and they needed to catch up. Later on I switched to a better highschool and my dislocating stopped. My knee would just get sore from time to time but I just took it easy and made the most of it...i had really slowed in growin and I think that made a difference now 2 and 1/2 years later from the last dislocation, yesterday my left knee finally dislocated at my bf's house and now I am laid up with a bum leg in a knee brace for awhile.My mom thinks im just growing a bit more, but I am afraid they may just pop whenever they like. i know how hard it is and the struggles. it was so embarressing to have that happen in front of my bf because I have tried so hard to overcome that and to be see as a normal person and not a cripple luckily he is a gentleman and things are okay. however I am also afraid of how work will handle it when I show up next week with a brace on my knee and can only walk.... I would love to be able to skip work to recover but I need the money and cant afford to get a doctors note. sorry for this long tale... but I just wanted you to know that you're never alone and that hopefully things will get better for you..
rebecca17595 madge198
Posted
Hi madge198, I have the same issue first happened in year 7 I rested it then again a small one rested it and then a really bad one when I was practicing for a dance show and went to hosp and got put in a full leg cast and didn't have an issue again until a few years back it now a on going thing of dislocation, I've learn when it starts to slip throw my leg straight to stop it I had hospital exercises and a date for surgery but it a long recovery and I couldn't afford it I csnt do half the things I would love to as I am always thinking about them coming out hospital said same to me my knees sit higher up and practly attached to nothing
Bunny100 madge198
Posted
I have exactly this issue. My knee caps were too high. Last year i had a 'tibial tubercle *distalization* osteotomy' and 'MPFL reconstruction' on my left leg which lowered the patellar to the right place and then replaced the tendons that were missing.
The recooperation, and rehabilitation from the surgery was not nice, and took a long time. I was 40 when I had this opperation: apparently recovery is easier if you are younger.
My left knee cap is now in the right place and feels much more stable. I intend to have the right one done too. My feeling is if that a problem like this can be eased but NOT permenently fixed with physiotherapy ... but I am not an expert. If you have this problem get it checked by a specialist, I insist on getting xrayed, consider surgery if possible.
Good luck to Madge and all others with this problem. I know how tricky it can be organising your life around your knees!
Jess92847 madge198
Posted
RoosterelL madge198
Posted
My knees have been dislocating since 3rd grade. My left one first, then 7th grade my right. Then my junior year both of my knees dislocated at the same time.
I stopped counting after 6th grade when my left knee had dislocated over 100 tines. My first blow out with my right caused me to be hospitalized with a swollen knee cap the size of a baseball bat.
My knee had dislocated countless times in my sleep, from my dog bumping into me the wrong way, from slipping on ice, from uncrossing my legs, to trying to stand up, or stepping the wrong way.
I wouldn't wish the pain on anyone. I wouldn't wish the embarrassment of screaming in agony in a grocery store because you skipped on yogurt and hyperextend your knee. I wouldn't wish this on anyone.
I can't run without knee braces. I can't go swimming in the ocean. I can't play with my children and I can't stand for very long without them. I can't do any physical activity without my braces and no one knows my struggle.
I'm afraid to stretch the wrong way, or to stand to close to anyone while I'm walking. I have to tell people not to bump into me or I could seriously get hurt. I've had friends run up to me and give me a hug the wrong way and my knee snapped.
It's been a very humbling experience and I've learned a lot from it. It's one of those things I'll always just have to accept about myself. If I could change anything about myself, it would be this.