Name :     Kelly Lebel 

E-mail :

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 may be.  

I went to my regular orthopedic specialist for a 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 accepting that I have melo ( as one says).

I  have been taking pain medications since 2006. I now figure it's not only for my work injuries throughout 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 all ready, like brush my teeth, bathe, drive and dress.  Although I still have use on 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.

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