Name : Griffin
E-mail : GRIFFO@dishmail.net
Adult: 43 years old
Location: San Diego, CA
Area(s) affected: Left leg (femur, patella, tibia, ankle)
Personal History:
Hi,
My name is Griffin Patrick O'Neal. I was born in Hollywood, CA. My parents were in entertainment and I later gave it a shot myself but with little success. My sister early in her life actually became the youngest kid to ever win an Academy Award.
My problem as a young "melo man" started when I was about seven. I was into dirt bikes and I pretended the bump on my leg was a motorcycle jump and I would jump my little plastic dirt bike off this ever growing "bump/jump." My mother didn't notice until I was almost 8. She took me to a doctor (Dr. John McGohnagle in Santa Monica, CA) where I had a biopsy (benign) and a surgery where they shaved the growth off of my tibia (resulting in me having to wear a cast up to my hip for months and a 10 inch scar). At the same time, Ted Kennedy's son was having his leg removed for a malignant tumor.
I have always been active, but have definitely had limitations due to my condition. In my mid to late 20s, I started to experience severe knee restriction and pain. My tibia growth also continued to grow back and continues to grow to this day. Another doctor attempted an arthroscopy on my knee with no success so they had to open my knee and ended up removing a golf ball sized piece of "melo-ness." After several months of healing, my movement improved, but now, 8 or so years later, my knee is again very restricted and causes me a severe amount of pain. My lower leg appears "quite swollen" due to the bone growth. I currently have Kaiser Insurance and none of the doctors have ever seen a case of melo. Most have never even heard of it. I received a referral to Dr. William Bowman in SD (an orthopedic oncologist) and had an MRI of my leg done this week, and now they want to do another. Because one of my legs is about 3 inches longer than the other, my back is rattled and I have 2 herniated discs. I limp like a pirate, and life isn't so comfortable.
I am to the point now that the deformity, functional limitation and pain are so severe that my doctors are recommending amputation. Although we know that may be a viable option, we are hoping to find some other form of intervention and save amputation for the last resort. We don’t even know if amputation would permanently free me from the pain. We are also looking checking into knee replacement, but all the doctors say I am "too young." I don't feel young.
I would love to hear from anyone. Have a beautiful day.