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10/10/2013 00:10
Tusk 
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10/10/2013 00:10
Tusk
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Re: New here.
Valerie, I saw five different hand surgeons after my little finger began contracting. Before then I had no idea what those two small knots in my palm were. Four of them wanted to operate right then. I ended up having RT and have avoided surgery so far. That was almost four years ago.
My point is you control if and when you have surgery, not your doctor. There may come a time when you need it but it is your decision. And unless you have a hand surgeon who is knowledgeable and up to date on the disease and will take their time explaining things to you, unfortunately you will get far better information from this website than from your doctor. But it takes a lot of reading. There are a lot of good posts, some going back several years, that cover the whole spectrum of this disease and different options.
Hard to believe there is no one in Atlanta offering RT. You could probably arrange it easily. I was able to get get RT in Birmingham, AL by talking with another oncologist in Charlotte, NC (Dr. Crimaldi). He called one of his colleagues at UAB in Birmingham and got things going. I'm sure you could do the same thing in the Atlanta area. There is a huge plus in having it done locally to avoid travel. The negative, as has been discussed on here many times, is that you are having it done by someone who is treating DD for the first time. Personally I don't think it is that big a deal if the doctor reads the Prof S. protocols which are readily available. Mine did and was very interested in the them.
Best wishes for a good outcome.
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10/10/2013 12:34
Valerie304 
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10/10/2013 12:34
Valerie304
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Re: New here.
Thank you so much for the info, how can i fined the protocol for Prof.S? Would like to have it when I go back on the 22!
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10/10/2013 17:21
Jolene 
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10/10/2013 17:21
Jolene
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Re: New here.
Hello Valerie,
I agree with Tusk, You should be able to find someone in the Atlanta area. I asked my podiatrist. Dr. Frank Sinkoe. He referred oncologist Ian Crocker, an oncologist with Emory 1365 Clifton Road, NE Atlanta, GA 30322 (404) 778-3473. I was unsuccessful in getting through to his office. I also searched the net for other oncologist. I too, thought I live in Atlanta this area is huge. Emory is a huge research center. Still I was unsuccessful in getting through to anyone’s office. Which is why I ended up in Florida.
However before I went to Florida.
I did speak with Prof. Ruby F. Meredith of University of Alabama at Birmingham (I retrieved her information from this website for clinics who do radiotherapy)
Department of Radiation Oncology 1700 6th Avenue South Birmingham, AL (Alabama) 35249 Scheduling: (205)934-5670. The staff was very helpful on the phone.
Upon speaking with Prof. Ruby F. Meredith staff I learned she did not ever recalled doing RT for the foot. She had seen only a few cases of DD on the hands. At that time I was in search of oncologist who had knowledge in LD because I only had it in one foot. The hands had not yet become an issue. She did say that she would be willing to use the same protocol.
Perhaps if I knew then what I know now. I might have gone to her. I really think that as long as you learn as much as you can about this disease and check your hands and feet thoroughly you can help assist the oncologist along the way. If you have an ultra-scan on your feet it can determine the depth of the fibroma.
The process that I experienced was: Oncologist orders the radiation, the depth the electron beam, & the perimeter of the diseased are. The radiation team makes the lead plate and operates the machine.
If you cannot find someone in your area perhaps you can make the drive to Birmingham.
I also understand how confusing all of this is and traveling makes it more uncomfortable and costly. The office staff at Prof. Meredith was very helpful and if you have insurance they will run it all through insurance to see what your part of the cost would be
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10/11/2013 00:46
Tusk
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10/11/2013 00:46
Tusk
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Re: New here.
Dr. Meridith did my RT. I thought they did a nice job. She and her staff did a lot of research into Prof. S protocols and she made some phone calls around the country.
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10/11/2013 12:36
Jolene
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10/11/2013 12:36
Jolene
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Re: New here.
Hi Tusk,
That is such awesome news!
Do you have ledderhose also?
Have you had both rounds of RT?
Or are you in between, on the break?
What about insurance? Did you insurance pay?
I was impressed with her staff when I called. I was leaning very close to going to her. And although she is only about 2.5 hours away I would have still lost the full week pay from work. I would have had to rent a car to make the drive. It basically was less expensive for me to go to Florida. Plus I have family there so it was a nice visit.
My 2nd round on my hands and other feet is in Dec. I will have radiation the week before Christmas and will be able to stay for the holidays. I am thrilled about that part. Excited to be with my grandson during the holidays.
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10/12/2013 01:01
Tusk
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10/12/2013 01:01
Tusk
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Re: New here.
No LD. Finished both rounds about 3 years ago. Insurance paid. I only paid my deductible. Was nice to have a facility 10 minutes from my office. I agree Prof. S has the best understanding of treating DD with radiation. It will be nice when RT is readily available as an accepted treatment and people can get treated close to home by professionals who have the same training as Prof S.
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10/14/2013 01:33
karenhart 
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10/14/2013 01:33
karenhart
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Re: New here.
I have found a radiologist in Pittsburgh Pa who has never done RT for DC but is willing.I can't find an experienced person here.
My question is, should we do a scan of some sort first that could locate nodes undetectable to me? I am no expert in DC and neither is the radiologist.
Is there anything else I should know before I proceed with this?
I have nodules but no contracture.
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10/14/2013 02:56
callie
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10/14/2013 02:56
callie
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Re: New here.
I had RT about 8 months ago. The Dr. did my whole hand (3Gy X 5 twice with a 10 week interval) from the base of my palm up to the DIP joints (top joint) of each finger but did not include my thumb.
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10/14/2013 11:59
karenhart
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10/14/2013 11:59
karenhart
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Re: New here.
Callie,Thanks, have you noticed results from the RT? Did you have a scan first?
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