Name : Claudia Weis

e-mail : 

Adult:  21 years old

Location:  Albertville, Minnesota

Areas of Body affected: left index finger

Personal history:

In June 2001 I had a ganglion cyst removed from my left ring finger. The surgery went all right. But a few days later my left index finger started swelling and hurting a lot. I asked my doctor, an orthopedic surgeon, about it and he told me to wait and see. About 2 months later I went back to him, showing him, that my finger had swollen even more. He took an x-ray and told me, that it looked kind of like something would be eating up my bone. Those were his words. So he sent me to have an MRI taken, because he suspected a tumor inside my bone. The MRI showed that it was not a tumor, at least not the kind he thought. He was kind of helpless but wanted to find out what it was. So he took a biopsy, because he then suspected an infection inside the bone. But it wasn't. So he told me to go for some physical therapy. I didn't want to do that without knowing what I had. So I scheduled an appointment with a hand surgeon. That was last week. He didn't have all my records but he called the other doctor to request at least some results. After viewing those and the x-ray he took he diagnosed melorheostosis. I had not heard of that disease at all. He told me a little bit about it but pretty much all I know about it is what I read on this web site (thanks to the creators of it!).

My finger keeps getting bigger and it hurts more and more. I cannot bend it a lot nor can I stretch it. The stiffness is increasing. It pretty much hurts all the time, sometimes a burning kind of pain, sometimes it feels like someone is stabbing a knife right into it.

I tried cooling it and I tried keeping it extra warm but it doesn't make any difference.  The doctor said I should go for the physical therapy to try to get the movement back. I will do that.

Comments and suggestions:

I am glad that this web site exists. I was really scared when the doctor first told me about the disease. I am still scared, because it seems there is no cure for it. But I guess, exchanging our experiences is a good way to deal with it. Please feel free to write to me. God bless you all!

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