kneecaps

[Guest guest]

Hi Elaine,

My name is and I also had no family history. My kneecaps were

dislocating and I was having more and more trouble getting around.

One of the drs I seen said women's knees didn't dislocate and as I

was only 14 my parents took his word. They thought I didn't know

exactly what was going on. I felt that way myself---did I really know

what I was trying to say. Then one day in PE class--my worst class,

my PE teacher seen it happen. She called my Mom and told her she was

taking me to see her dr. My Mom got upset and said she would be

taking me herself. We got a late appointment that same afternoon.

This man came in a gave me an exam and was bringing medical books

into the romm and reading then measuring my leg and arms. In short we

were there about 2 1/2 hours and he was sitting on the floor amongst

his books and said he was almost positive I had CMT and made

arrangements for me to see an ortho. The ortho confirmed the CMT and

said he thought I needed knee surgery. He went in and tightened my

kneecap by putting an eye type screw in my kneecap and pulling the

muscle and tendon tight this way. It really helped alot, the down

side was I didn't have alot of bend in my leg. But there was enough

that I could walk and get around better. This worked for several

years and then I started having trouble with my other knee. By now I

was married and had to find a new dr. I did and he turned out to be

the young intern that was in on my diagnosis from the beginning. He

sent me to a ortho and I had the same surgery on my other knee. All

in all I had 3 surgeries on each knee and the last one on each knee

they removed my kneecap and I went without them. Well, I had also had

heal cord tendons lengthed on each foot and was wearing braces to

keep my feet in place. This was all working real well for me until my

feet started giving me more problems. In 1999 I had both of my feet

and ankles fuse into place. This took almost all year to get this

done and everything healed. So now I no longer need braces or AFO's

and it's great not to have this excess weight to handle. The down

side is I can't stand and pivot anymore, but that's ok. To me it was

worth it and some of my pain has gone easier and I don't have to

fight to get my feet in the right position to be able to sleep. I use

an electric wheelchair all the time and it is really a good thing. I

can get around alot better and my hubby doesn't have to wonder if I'm

laying on the floor somewhere. I have a cell phone right on my chair

so I have access to help as soon asI would need it. I do have trouble

with cords though. I've gotten tangled up in the phone cord and the

vacumm cord!! To the extent they had to cut them away from my chairs

tires. What a deal!!! But, as long as I can laugh at my situations I

can get through anything. Plus this wondeful new group of friends I

have found at makes things fall into place. It's just so good

to read everyone's messages and say, yea that's whats going on with

me. Sorry, I can get a little long winded, but I thougt maybe my

experiences would help you with your daughter needs.