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Question on RT and others
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04/11/2010 12:25
lori 
04/11/2010 12:25
lori 
Re: Question on RT and others

Hi there,

I am 54 now but was 53 when diagnosed. I have BCBS of NC. I referred myself, the hand specialist I saw for diagnosis only recommended surgery and said that surgery was the only treatment. I gave him 2 opportunities on 2 separate days to offer other methods of treatment.

The way I found Dr. Crimaldi was I called between 25 and 50 oncologist and finally found someone who said if I was looking for RT then to call directly the people who do radiation for cancer and I got a list from them and started calling. You might be able to find someone in Memphis who knows how to treat it. I know in Charlotte's yellow pages if you look under radiation in the physicians section you only see the places that process it, not who does it. I started my calls to radiation doctors by asking them if they did radiation for keloids and if they said yes I proceeded to ask about DD. Dr. Crimaldi was stunned that he was so difficult to find, he had assumed that hand surgeons would refer. HA, yeah right. Before you come to Charlotte, spend some time looking in your area. Find out which doctors oncologist's refer to for radiation treatment and then ask them about low dosage RT.

Dr. Crimaldi did verify that I was diagnosed with DD before he treated it. Dr. Crimaldi required an MRI which was really my only expensive cost. I think he does it as standard practice because he mostly treats cancer. It was helpful to have a base line of my hand on a CD so I can have a record, but I believe if there is a next time I will ask about a CT scan or x-ray because it seems to provide the same information -how deep to radiate and exactly where. As I have said before, his main office in Charlotte is on hospital property so my insurance considered it a vist to a hospital and it went against my deductible. He has an office in Mooresville and in south Charlotte where all I had to pay was a copay.

As to how I knew mine was active. I had pain, an itiching or tingling in my palm, like something was crawling around in my palm just under the skin. My nodule was very tender and hurt to press on it, I was developing a cord practically before my eyes, had tightness, puckering and was getting clumsy. All those feelings are totally gone now. I had RT because not only was mine active but because it seemed to be aggressive and I knew I only had a small window of time to have it done before my cord started contracting. Since my DD went from a nodule to a cord in less than 6 months I did not believe I had a year or two to think and watch it, I also did not believe it would just stop growing.

Unfortunately each persons story is different and our hands seem to have this disease at different speeds. There are no wrong or right answers, only what seems to be the best for you and your circumstances.

Keep us posted as to your thoughts,

Lori

04/12/2010 01:46
David26

not registered

04/12/2010 01:46
David26

not registered

Re: Question on RT and others

Thanks Lori, if I decide to go to Crimaldi I will check with you. I will know more after I visit with my hand specialist next week.

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treatment   similarities   nodules   disease   contracture   different   opportunities   questions   insurance   Crimaldi   unpredictable   circumstances   because   Unfortunately   inactive   Question   Charlotte   Radiation   aggressive   radiologists