Does anyone have kneecap dislocation problems like me? This is my Story.

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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! sad

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.

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  • Posted

    Hi Madge,

    You don't mention going to the doctor with this.My daughter suffered with this at your age and was given the option of physiotherapy or surgery.We opted to try physiotherapy first which involved an exercise designed to strenghthen the muscles surrounding her knee.She did this exercise several times every day for some months and it worked.She had to give any activity which involved continuous bending of her knee such as cycling.She was always a bit bendy as a child which we thought nothing of until her knee began to slip out of place.

    She now has a child who has hypermobility level 9 so it looks like she may have had the same thing but to a lesser degree.We try to sto him putting his feet behind his head as it may overstetch his ligaments and lead to arthritis in later life.

    Maybe you should give up dancing until you can see a doctor and get treatment.

    My daughter's Gp said this is quite a problem with young people.Don't forget,at 18 your bones are probably still growing.

    Good Luck with it all.

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  • Posted

    Hi Madge

    Sorry to hear about your ongoing knee problems. My nephew had a similar condition with his elbow and shoulder. We spent many hours at a & e waiting for them to pop his arm back into place. It didn't help that he was hyperactive! He is in his twenties now and his joints seem to have strengthened. Now, it rarely pops out and he lives a very active life.

    Although, we on this site have different problems, we can all relate to the stress and anxiety you are going through caused by constant pain (to say nothing of the frustration of not being able to do the things we enjoy). You are definitely not alone and although that does not take away the pain, I think it helps emotionally to know you can express your woes to people who understand and don't just think 'OMG, here she goes again!' Good luck in the future and keep us posted with your progress. Take care.

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  • Posted

    As a teacher I just hate the way children can be so cruel. As a parent my son was similar to yourself with his knees. I know everyone is different, but he was diagnosed as having a mild muscle condition called non-progressive myopathy.
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  • Posted

    My daughter had this problem and it has been solved by surgery - discuss it with your family doctor and ask to be referred to an orthopaedic surgeon who specialises in knees. Physical therapy doesn't help permanently and if it bad enough doesn't achieve a good result.

    She is a paramedic and post surgery is back to working, doing gym and it doesn't pop out! You may have to accept this sort of action - but it does work.

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  • Posted

    Hi Madge,

    so sorry to hear what your going through I thought I was the only one. I'll tell you my story I'm 33 years old from Australia married with 3 kids this started for me when I was 8 years old had my first surgery when I was 10 they took a ligament from somewhere in there drilled a hole through my kneecap and attached it to the other side extremely painful for a child, I had this done twice on the left leg to no avail I couldn't take a step without both my knees dislocating gave up netball by age 14 I couldn't even last 5 minutes on the court and the trainers tried everything to get it to stay it only ever made it worse by the time I was 16 I was going in for a tibial tuberosity transfer still to no avail it only made the knee severely painful I put up with it for 11 years because there was nothing more they could do everyday things became extremely difficult especially with the kids, in 2010 I had another tibial tuberosity transfer on the same leg because I was collapsing daily and yes extremely embarrassing also had it done on the right leg in 2012 still didn't help just made it more painful

    now since Christmas of 2013 my left leg has completely given up I cannot take a step without falling I have been in a zimmer splint for 6 months awaiting surgery on the 14 th July where my new surgeon will perform a throchleoplasty at this stage I'm living off 8 panadeine forte a day that aren't doing jack s**t my right knee is failing as well I can't walk 5 metres without being in excruciating pain, if this next op doesn't work I will be in a wheelchair full time

    i know exactly how you feel I have too been ridiculed all my life even called lazy but the truth is walking is a MASSIVE PAINFUL STRUGGLE 

    I wish you all the best xx

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  • Posted

    im having the same issue. My right kneecap makes crunching/popping sounds and it is swollena nd hurts to bend and bear weight. It has been hurting for almost three weeks
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  • Posted

    Hi Madge,

    I'm very interested in your story, it sounds identical to my daughter's, who is currently 11 years old.  Her knees first started dislocating when she was 6 years old.  We recently went to the doctor and they recommended surgery for her right knee, but we don't know what to do.  I would love to hear your opinion, what would you say if your parents would have had the option to have surgery on your knees 7 years ago in hopes that it would have greatly discreased the number of times your knees would dislocate?  We are currently using medical tape to tape her knees in place everyday, but even with that they still sometimes pop out and she's getting embarrassed having to wear the tape. The surgery would be to tighten some of her ligaments to hopefully hold her knee caps in place better.  The recovery would be about 3 months with lots of Physical Therapy to follow. I'd love to hear your thoughts from the experience you had as a child with this condition! 

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  • Posted

    im having that issue to
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  • Posted

    Madge, I am sorry to hear about the issues you were having a little over a year ago and I truly hope you do get to read this and know that there is another person in this world that knows what you are going through. 

       My name is Jeffrey and I live on the east coast of canada and I was born with the same affliction as you, I fortunately knew about my knee issues at a very young age because I was diagnosed with club feet as well at birth.  At a very early age I began to realize if I turned my leg a certain way or even shifted weight a certain way my knee would pop out to the side and I would drop like a ton of bricks.  This became such an issue with me growing up that I became known as the kid with the bad legs in my little town, If I had a dime for every time I fell growing up because of this stupid defect I would never have to work another day in my life, it can be embarassing but it can be fixed.

        Throughout my teenage years and right up until 23 I just dealt with having the knee issues until I went to my doctor after my knees eventually getting so bad they didnt even stay in anymore, my knee muscles had taken over and my kneecap sat to the outside of my leg, but I could still go down even with the slightest tweak.  the pain began as the kneecap started to grind on the outside of the socket, I had to see a specialist.

         The day I seen the specialist I was diagnosed with congenital luxating kneecaps (CPD) or floating kneecaps, turns out quite common in small breed dogs but very rare in Humans, I knew when a nurse of 30 years had to come find me in the hospital because in 30 years she had only ever heard of it, never seen it.  Long story short, I had both patellas (kneecaps) removed at 25 years old, I am now 34 years old and my legs feel more sturdy then they ever have.  the pain still persists due to the damage I let my kneecaps do before I got to a specialist but over all it got way better.

        Just wanted you to know your not the only one, best of luck.

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  • Posted

    Ive had pretty similar problems to what you're going through. When I was 11 I underwent surgery from bilateral hernias. Something that usually occurs in older men. Then when I was 17 I started having knee cap dislocations from both knees. The dislocations combined with poor eyesight, scoliosis, and mitral valve prolapse, I was diagnosed with Ehlers Danlos Syndrome. This syndrome is a collection of connective tissue disorders. You might want to look into this because it sounds like you have problems with your connective tissues. I'm sorry you have to go through this. I know what it's like to have a body that limits you from doing the things you want to do. My doctor told me that I could never run without have severe pain and even knee surgery. I can't ever do sports unless it was swimming, and even then I have to be careful. I wish you the best of luck!
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  • Posted

    Sorry you are going through that. I hope it is a comfort to know that you are not alone. I have been suffering with "floating kneecaps" or luxating patellas nearly my entire life. It began at around age 6 or 7 (I remember the first time vividly as it was very traumatic and still is each time it occurs. Even thinking of it makes me cringe). 30 years later I still deal with this problem. It is not less painful, less shocking or less traumatic even now, after countless dislocations and this many years. Each time it occurs, I throw myself to the floor screaming or crying and, as you can imagine, this can be quite as embarrassing as it is painful. To bystanders, they only see a girl or woman throw herself down on the ground screaming often without any apparent reason. Most don't know what to do and ignore me as if I'm crazy. Really it is a combination of the shock of feeling such a thing (both disgusting and painful) and the embarrassment for having it happen publicly. I've been to many doctors and have only been offered physical therapy to help. I can tell you that it has not really helped me much though it may be more helpful to others. When I was pregnant and concerned about falling, I was given extremely uncomfortable and bulky braces that I found too difficult and embarrassing to wear daily. And, of course, I dislocated my knee in a bagel store at 8 months pregnant. There I found myself laying on the floor of the store with the horrified looks of employees and patrons. I cried long after the pain subsided out of utter embarrassment and frustration. Another stand out time was dislocating my knee at the top of the stairs at my grandmother's house and hurling myself down the flight of stairs, knee out and twisted in a terrifying position. My screams prompted my grandmother to scream in such a way that had her neighbor break through the door to rescue us and me to cry the rest of the day from the trauma of hearing her fright. Or the lovely time a friend's friend thought it'd be funny to kick me in the back on the legs to be funny, not realizing I have a problem, and dislocating them both at once. Yes, there are countless times. This month it has occurred twice though I can go months without it. 

    As for your struggles to fit in in school, I too have been in your shoes. I can tell you that I hated school for it and left high school though I don't go around recommending such actions. In hindsight, I feel it has helped me develop into a more compassionate, understanding and accepting person. In a weird way, I am grateful for it. This may sound odd to say but I almost rather my child be on the receiving end like I was than to be on the end that dishes out insensitivity and bully like behavior. While it us tough to go through, if you can turn those experiences into something better and into compassion for others, later it can become an invaluable experience. I kept mostly to myself. I still tend to though it does get easier as you and those you associate with or are around daily mature. That is not to say that 35 year olds are mature either. I still see this awfulness amongst adults sometimes and have dealt with it again personally with some nursery school moms (they can be really terrible too) and even at work. There are still cliques. There is still jealousy. There is still negativity and shallowness. But I try not to get involved much in that and gravitate toward those who do the same. Those people do exist. In school, your environment is smaller and you have less options. Later on that changes a bit. Hang in there. It gets better. You will find your people. smile 

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  • Posted

    Also wanted to note that I am limited in the things I can do as well. I've come to accept them though I confess I was never into sports. That said even walking can prove to be an issue at times. My daughter wants to go ice skating for the first time and I cannot do that with her. But I did focus on other things I could do and that was helpful. If you do want to do something that is potentially a harm or danger for your condition, I would suggest proper braces or the advice of a specialist though. Good luck! Stay positive!
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  • Posted

    Did you ever go to the doctors for it?

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  • Posted

    That's awful🙁 Wish I could help. I k ow what it feels like tho.rhe same thing will happen to my feet during certain positions.
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  • Posted

    I registered just to reply to this. I'm 13. You have the same knee problem

    as me. My problem started in 3rd grade when I was 8. it popped out in PE, I

    just got an ice pack. They started popping out more times a month. Up to

    these last few years, they stopped popping themselves back in. HURTS.

    LIKE. HECK. Up to this year, they just keep popping out, over and over.

    About 4 times a week. These last few months... In June on my dad and

    niece's birthday, I took my knee braces off to take a shower, sat down in

    the living room, and the left knee popped out. After we got it back in, about

    10 minutes later, it pops back out. Now, I can barely walk or stand without

    falling over. I always feel pain. Then I can't do anything without wearing

    knee braces. I wish you the best of luck, you need it. I'm in the marching

    band, you do ballet. I'm in 8th grade, i screamed really loud one day and

    all laughed, then i had my breakdown. Hope you get better, then i'll probably

    have some hope.

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