Originally Posted by Lourdes50
My 16-year-old son has a hard painless lump about an inch above his left knee and slightly towards the interior. The skin above it looks fine. The lump is large. He has had it every since he can remember but never told anyone.
I have this also!!!! This is the first case I have ever heard of that is nearly identical to mine! I was diagnosed with multiple exotosis at 13 because I had one of these bumps growing under a tendon in my right knee. It was excruciatingly painful when it was growing and then the only pain after it was there was a constant straining of my tendon whenever I did anything (I couldn't do a lot of physical activities because of the pain, didn't go to PE very much, etc.). I had that one removed a year after I was diagnosed, all the while I was in physical therapy.
The most unbelievable thing, to me, is that your son and I have the EXACT same bump on our left knees, and that happened to be the first one I ever noticed, thought I had it forever (and I probably have). Both of my pinkys are also have a curved bone where the last tip should be (example of malalignment of joints) and I was born that way.
When I was diagnosed they told that the bone growth 'should' stop after puberty...that IS NOT the case for me...I believe I just had another little bump come in on my foot and I'm almost 21. I have tons, possible over a hundred, of these bumps on my knees, ankles, shoulder, and hips.
This is supposed to be a hereditary disease, but I'm guessing neither you or his father have the disease? My parent's didn't have exostosis so I was termed a mutant
I wish I knew more about this disease myself, but I haven't seen a doctor about it in over 5 yrs...
I'm really intrigued to hear more about what you guys are doing about this and how it impacts your sons life. My experience has been pretty bad, I hope yours has been better. There's absolutely no pain...not the bump itself of course, but no muscle or joint aches and pains?
I'm so glad to have finally found someone experiencing what I live with