Patient Stories

Samantha

My journey started when I was diagnosed with CMT (Charcot Marie Tooth) in the 6th grade. My parents took me to a clinic in Michigan to do tests and see what type I had, Type 1A if anyone is interested. It’s a genetic disease so both my parents were tested and neither of them have it. The clinic put electrodes around my fingers and needles in my calves and shocked me until I flinched. They had me do puzzles to test my agility. I was then fitted with hard plastic leg braces which cut the back of my ankles and made me bleed. After a few months I was fitted for hard plastic shoe inserts. Life went on.

I joined color guard my sophomore year in high school. During a summer practice in my junior year, my hips locked up and I couldn’t move. Practice stopped and my dad came and loaded me into the car like I was a 2×4 piece of wood. We went to the hospital, they took x-rays, they sent me to Riley Children’s Hospital.

The doctor at Riley was surprise that I’d been walking let alone doing color guard. He tooks x-rays, gave me limitations and scheduled surgery for my right leg (January 2007).

The first two surgeries were to screw cadaver bone on top of the dislocated joint.

Surgery came with a month in a lay-down wheelchair (not able to bend at the waist or use the toilet), a month in a regular wheelchair (at school) and using left leg to get around with walker (at home), a month assisted walking with crutches and then physical therapy. January 2008, did all of that with the opposite leg.

Third and forth surgeries were done on the right leg to get out bone fragments. Then I went in and had the arthritis scraped away. Had a couple cordozone injections, didn’t last long.

Now I’m 26 and have been to quite a few specialists to have a hip replacement and none of them are brave enough to do the surgery. They say I’m ‘too risky’.

Don’t even get me started on shoes! You can see daylight thru the arches of my feet (from CMT) which makes buying shoes difficult and then adding my inverted hips… goodness! All of my shoes get ruined within 6months from wear-and-tear.

So that’s my situation.
I’m wanting a doctor to man up and do the hip replacements or someone to find me a shoe I can’t wear comfortably! Is that too much to ask??!!

I don’t even get a break from the pain when I’m sleeping! Constantly waking up to resituate.

I just want one pain-free moment.