Name : Ken Hunerdosse
E-mail : firstname.lastname@example.org
Adult: 60 years old
Location: La Harpe, Illinois
Area(s) affected: Right hand
I was diagnosed with Melo in 1990 while at Ft Bragg, NC. The same Ortho surgeon that removed the “bump” said it most likely came from a jammed thumb several years earlier. So, I thought it was merely a fancy name for a neglected injury. True to what the surgeon said the growth did reappear nearby in my wrist. It has become problematic for mobility and pain so the VA in Iowa City is getting ready to remove it. At the same time I am seeing a rheumatologist as I am beginning to show RA symptoms but no positives on testing, I do have erosive osteoarthritis. My rheumatologist saw the x-rays and a Ct scan ortho ordered and his curiosity about melo began. He was the one that described the disease to me and now my research trek has begun. I read on melorheostosis.org that donations of the boney matter when removed are requested but it looked like the sight has not been used much.
Update: I had my surgery just one week ago so the "did it help?" verdict is still out. I will post some more as time progresses.
Update: It has now been 3 weeks. The scar is healing well. Of course the nerves in my thumb are really wacky right now. I have, at this point, about the same movement that I had before the surgery in my hand but my wrist is much improved and that was one of the objectives. I still have weakness from the surgery but that should come back soon.
I do not know if I have Melo anywhere beside my right hand but I am now encouraging the Doctors to see if there are other locations. Some of the other testimonies indicate, to me, that I may have other sites.
I did get to donate the material and it appears Dr. Mortier has received my samples. Thanks very much to Kathleen for her help or I do not think it would have happened. I would also like to thank the VA Hospital in Iowa City where the surgery was done. Besides my rheumatologist the orthopedics department is now excited as they had part in this research. The surgeon that did the surgery was the hand specialist in orthopedics at the University of Iowa Hospital. I have been reading the testimonies and realize how fortunate I really am so far.
I would be interested in helping others. I have already discovered that I have been following some of the best advise ... to keep busy, listen to your body, stretch a lot, heat, and exercise. My rheumatologist, has prescribed Naproxen and plaquenil. I seem to get some relief from this but not all the time.
If you would like to please contact me via FB or email
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