Name : Kelly Lebel
E-mail : kllx3@aol.com
Adult: 43 years old
Location: Lewiston, Maine
Area(s) affected: Right hand, right ulna, right shoulder
Personal History:
Noticed lumps on my middle finger, on my right hand, and very tender to the
touch, wasn't able to make a fist, got X-ray done due to a work injury back in
1994. A chiropractor, orthopedic, and neurologists I had, all over look these
mysterious lumps showing up through the years until 2007. I had continuously
questioned these lumps and not one doctor could explain what is was, even after
seeing many X-rays, mri's, ct scans, etc. Then not only was it confirmed that
these lumps have grown, but I found another on my ulna and I just had rotor cuff
surgery on my left shoulder, and the doctor that did the surgery indicated to me
that he scrapped away what he called some abnormal shaped beginning of some bone
spurs, which bone spurs are a common thing found with rotor cuff issues, but
this made me even more adamant about getting someone to tell me what these
things growing maybe. I went to my regular orthopedic specialist for check up
after my surgery and got a doctor that was filling in for him that day. He
ordered another X-ray of the hand and that was the first time I heard the word
melorheostosis. I questioned this with the doctor that did my shoulder surgery
and after another scan, he as well as two other of his associates within his
practice confirmed the same diagnosis.
Now in 2011 I continued my
search to find another answer and once again by an accredited orthopedic hand
specialist from Brunswick, plus he referred me to an orthopedic oncology
reconstruction surgeon in Bangor, Maine . I have stopped my search for another
diagnosis and am excepting that I have melo ( as one says) I been taking pain
medications since 2006. I now figure it's not only for my work injuries through
out my hands, arms, elbows, shoulders and neck, but just in the past year the
pain from melo in my right hand and arm have become increasingly stronger and
harder to bare. The medication is helping with that to some point, as well as a
topical cream, that is prescribed that does take some of the pain away. As the
cold and snow starts to set in I have started to notice a lot more discomfort.
I am right handed and have started to practice writing with my left hand. Due
to my work injuries in 1994, I have learned to do many things with my left
already, like brush my teeth, bathe, drive and dress. Although I still have use
of my right and no one can say if I will loose complete function of my right
some day, there is no fixing this or stopping it, and if the pain gets to an
extreme point that surgery or amputation is my only option for a productive life
I want to be ready. The one thing that I believe has allowed me to continue with
this as it is limiting my ability to do things normally is I continuously try to
massage, and stretch to help keep the flexibility and mobility that is
decreasing every year. I have also been comforted by the heat, so like a heating
pad, or a warmed rice bag. It doesn't take away all the pain and discomfort but
I feel gives some relief. Good Luck to all of those that get this scary
diagnosis, and thank you to this organization that is helping get the word out
there about this for they have given me information to help come to terms with
it.