Name : Mari Robinson
E-mail : riverrat@bis.midco.net
Adult: 39 years old
City, State: Bismarck, ND
Areas of body affected: Left knee, left ankle, left foot, right hip.
Personal History:
Diagnosed at age 14 after complaining of knee pain. Began in knee area, and later moved into ankle and foot. Have had 3 surgeries, one on each area to clean out growth material from joints to allow for more normal movement. Looking at a possible 4th operation. This time on the knee as a tumor/growth is causing more and more pain and loss of mobility. Have been seen in Mayo Clinic and the Bone and Joint Center in Bismarck, ND.
I have a large area of growth in a second area behind the knee now that is very painful and I cannot bend the knee much at all. A Dr. at the University of Minnesota recently said he could remove much of it but the surgery will be quite extensive since it is in an area directly behind major nerves and arteries. Recovery will take months of rehab and the results are sketchy. I am on Tylenol w/ codeine and Advil for pain. I am having difficulty sleeping as I wake often from pain. I cannot bend to sit in many positions that require me to bend the knee and have difficulty traveling, walking long distances and especially stairs. I am interested in visiting with anyone that would like to compare notes.....
Update - 2/13/03
I have a new email address. I have become disabled as the melorheostosis has worsened. I wanted you all to have my new address.