Name : Michele Santiago

E-mail : 

Adult:  29 years old

City, State:  Edgewater, New Jersey

Areas of body affected:  Right ankle and foot...spreading through toes and up foot

Personal history:

I was diagnosed in 1997 at Montefiore Medical Center in the Bronx [New York]. The doctor who diagnosed me is Dr. S. Bosco. For about 2 years prior to the diagnosis I had been getting severe pain and swelling in this ankle. In my high school prom picture you can see the beginnings of the large lump that has formed on my right ankle. The 2 years leading up to my diagnosis came with pain that I had never experienced before.  I had already seen 2 orthopedic surgeons. One told me, "I can open you up and poke around, but there isn't much I can do." The other told me that he didn't know what it was. He did extensive testing and, in the end, gave me an air cast and sent me on my way. I would wake up in the morning and not be able to walk. The pain and swelling were too intense for me to move. It would take about 45 minutes until I was able to put any pressure on that ankle. One morning, 3 months before my diagnosis, I woke up and my ankle was triple its normal size and the pain was so severe that crying would have never done it justice. Frustrated with the lack of knowledge that the doctors had I stayed home and did nothing. When my son's father needed arthroscopic surgery I went to a consultation with him and his doctor...Dr. Bosco. This doctor noticed my ankle and began to ask questions. I had no answers but to tell him the pain I was in and the extent of the prior tests. He asked me to get all the test results I could and bring them in. After bringing them to him, he fit me with a cast for 9 weeks to see if that would settle the bones. Not knowing what the problem was, he took my MRI. bone scan and x-rays to his colleagues. The end of the 9 weeks came and I went to get the cast removed. He told me that I had melorheostosis. Since then I have had physical therapy, cortisone injections, methotrexate and folic acid and wore a rocker boot (cam walker) for almost 3 years. This past summer I stubbed one of my toes on my right foot...I thought that I broke it. I went to the hospital and they took x-rays. The same orthopod who gave me the air cast examined me. He told me what I had (melorheostosis) and told me that I hadn't broken anything but that it is getting worse. Since then I just deal with the pain. I am a teacher and stand all day. The pain is enormous. The lump is the size of a tangerine and now there is a lump on one of my toes. The entire foot is deformed. I haven't worn heels in years and can't run. No one seems to know how to help me and I know that it is getting worse...I can feel it. I am so scared. I am sick of all the pain. Please help me if you can. I would love to run with my son. I have never done that before...I couldn't. Please help me if you can.

Update added 8/10/03:

I have recently found a new lump growing on the back of my left ankle. The lump on my right ankle is growing and the obvious deformity of my right foot, ankle and toes is getting worse. I don't know what I will do if my left ankle gets as bad as my right. Do I go on disability or keep working and wait this bone disorder out? I am feeling more frightened than ever. If you have any suggestions please email me. God Bless!

Update added 1/15/06:

Hello. I first placed my personal history on this site in 2003 and since then the melorheostosis has gotten much worse. The lump on my right ankle is the size of a baseball.  Praise God that there was no melorheostosis found in my left foot but doctors are still unwilling to touch this large lump.  Does anyone have any suggestions for a doctor skilled with this disease?

Update added 6/28/10

My name is Michele Santiago DiStasio. Formerly of Edgewater NJ and now is Washington, NJ.

Birthdate: Oct 25, 1973
Diagnosed: Sept 1996
Since my last post the pain has increased to an unbearable level. I now have a deformity on my right knee that my PCP thinks may be a progression of melo. The pain in my knee and ankle are ridiculous. I get a shooting pain in my toe that is debilitating. The lump on my right foot is radically larger than it was previously. Walking, sitting, standing, putting it up, wrapping it, ice, heat, pain meds, physical therapy, rocker boot...none of it alleviates my pain. The pain doesn't allow for a decent night's rest. I wake up up to 8 times a night in pain. My doctor is sending me to a specialist at U Penn and for more testing. He says that I need surgery. I pray this works.


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