Patient Stories


Hello all. Growing up I had no idea that there were others like me. Except for a story that my doctor told my mother about a little village in Italy where all the females born had Left hip dislocations. The WWW has created a kinship those like me would otherwise never know.

Mine wasn’t discovered until I started walking. There’s a picture of me standing on our front porch, right foot flat, left foot on my toes. Decades of walking on my toes (I’ve always hated shoes!) changed the shape of my foot. My heel never touched the ground.

I was referred to a doctor and I have no doubt he saved my life. Without him I would have been in a wheelchair forever. I had my first surgery at 18 months old and 1, 2 or 3 a year for the next several years. I taught myself to walk in that frog cast with the bar between my knees, chest high and to the toes on the left, to the knee on the right. I went up and down stairs and outside and crawled on my swing set. That was my normal; I didn’t know any different. When I was 5 I fell off that swing set and the cast snapped my leg under my knee. After that it was full casts on both legs. Plaster casts in the humid summer were no fun! I had a few procedures where he had to break my femur and rotate it because my left leg kept turning in. Pins were put in to hold it in place. And pins managed to find their way out! My mom totally freaked when I showed her the pin sticking about an inch out of my inner thigh. Straight to the hospital we went and I got to keep the pins. I thought it was cool.

I was born without a socket and what little ball I had was flat. All those many surgeries were to try to keep it in place. By the time I was 13 my leg length discrepancy was 3.5 inches. Grade school will forever be associated with built up Saddle Oxfords – black and white and tan and brick. I’m pretty sure if I ever see a pair again I’ll collapse in terror. My leg also didn’t get as good of circulation as the right so it is smaller around too.

I had a reprieve for about 6 years or so and when I was 13, the summer after 7th grade, I got my first hip replacement. A month of traction to stretch the muscles then a surgery that was pure hell. Muscles had bunched and tangled into that empty space and had to be cut out before the appliance could be put in. I think I screamed for 3 days straight. No amount of pain killers would touch that pain. Doctors came from all over that hospital with suggestions and nothing worked. Only so much morphine you can give a 70lb kid before she stops breathing.

After that the length difference was about 2.5 inches. I put lifts inside my shoe – no way was I ever wearing another build up shoe. When I was 18 – happy graduation! – Doc took out 2 inches of my right femur to make my legs more even and try to alleviate as much future back trouble as possible.
I had my son 13 years after that first hip went in. I tried natural but after a day or so (that’s a whole another story) he came C-section. Hip #1 lasted for 3 more years until I fell on ice and snapped the fake ball off of the fake femur. Of course we didn’t know that’s what happened because I lived on pain pills for a year between the fall and the surgery. Doc told my husband that after surgery #2. So I’ve had hip #2 for 20 years now. I had to have some replacement parts – new ball and liner – in 2012 with the hip genius that my Ortho practice acquired just weeks before I went in with pain. I was so fortunate – this is the practice I’ve gone to my whole life and after my second doctor retired they informed me that there was no one in this area qualified to touch my hip. And yes, I live in the burbs of a big city. That made me feel so special. Not!
My current status is constant pain. The back pain started probably 15 years ago. I have always walked with a limp – first because of the length difference then add to that the loss of most of the muscles that you need for stabilization. Without Celebrex, Fentanyl and Hydrocodone my back pain level would be 20 out of 10 – jump-off-a-bridge excruciating. And ever since the 2012 surgery the entire hip area has joined the pain circus too. The general consensus is that upwards of 20 surgeries is too much trauma to one area and pain is now a permanent fixture.
We need to make this hip last as long as possible. I now have just a bit of femur bone left – what’s clinging to the railroad spike-looking implant. Another replacement would mean I’d have an all metal thigh bone. The left side of my pelvis is paper thin and next time cadaver bone will definitely have to be grafted.
But I’m still walking, I wear 3 inch heals if I want to – and since I’m 4’11” I want to – and I try to stay as up-beat as possible. You can only live one day at a time.