Name : Marie Malchodi
E-mail : Marie_Malchodi@brown.edu
Adult: 41 years old
City, State: Providence, RI
Areas affected: Middle two fingers of left hand
Personal History:
When I was about 9 years old I started to notice a bump developing on the inside of the second joint of my left ring finger. My family and I thought that perhaps I had unknowingly injured it, but when it didn't go away, we became curious and consulted a doctor who thought that it might be some sort of arthritis. Although it was awkward, it did not hurt, so I didn't pay much attention until I started to develop another bump on the joint of my middle finger directly opposite the first one. This one started growing in my late teens and, unlike the first one, was and has been painful fairly constantly from the beginning. It is also much larger and grows both up and out. The fingers are very splayed and resemble the "live long and prosper" sign from Star Trek. I have some limitations on the movement of those two fingers and my left hand (non-dominant), though I do make my living using my hands (I'm a book binder). About 12 years ago, when the second bump was really giving me more trouble, I want to see a hand specialist who very excitedly diagnosed me with melorheostosis and told me that there was nothing that he could do for me. He did say that the condition was very rare (about 400 known cases at the time) and that it was not thought to be genetic. That's pretty much all that I knew until finding this website. In reading through the personal histories I realize that my case is very limited and I feel great sympathy for those whose condition is more widespread. Perhaps this site will be a factor in some day finding ways to treat melorheostosis. Thanks to all who established this site and who contribute to it.
UPDATE: May 12, 2006:
I want to add that I had surgery this past February for the melorheostosis in my left hand. My surgeon was Julia Katarincic who works out of Rhode Island Hospital and is affiliated with Brown University and University Orthopedics. I decided to have the surgery because my fingers had become very stiff and painful and I felt that the possible advantage outweighed the possible risk. In my case, the melorheostosis is very limited and occurs without osteopoikilosis or Buschke-Ollendorf.
My feeling is that the procedure was mostly successful. My surgeon described the bone that she removed as extremely hard and requiring a much bigger chisel than what she would normally use in this area. In addition, she made a decision to leave a bit of the diseased bone because one of my tendons was attached to it and she felt that since my main goal was mobility, trying to remove and replace the tendon would seriously compromise that. Since the surgery I have had extensive rehab with Karen Carney at University Hand Therapy. Although my fingers were very painful and swollen at first, the therapy has given me much more mobility than I would have expected. I still experience pain, but not to the extent that I did. The swelling has mostly subsided and though my fingers are still fairly uneven, I don't have the large knobs that I had before. I have been back at work as a bookbinder since about 7 weeks after the surgery and have had no problem with that, nor with playing guitar (I was always pretty limited there anyway, but mostly by lack of talent).
I did also arrange to have my tissue sent to Denmark to Dr. Geert Mortier's lab. The last I had heard, the samples had not arrived in good shape and the lab didn't know if they could be cultured. I was disappointed to hear this as donating the tissue was very important to me.
There is still some chance that they were able to use some of the samples, however, and if that's the case, I hope that they can contribute to learning more about the origin and treatment of the disease.
Many, many thanks to Lyn Pickel for helping me in the lead-up to my surgery and for putting me in touch with Dr. Mortier's lab. Lyn was tireless in helping me to bank my tissue and in her support and encouragement.