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advise please how to find good hand surgeon and radiotherapy
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04/16/2017 19:50
LindaSusan 
04/16/2017 19:50
LindaSusan 
advise please how to find good hand surgeon and radiotherapy

I was diagnosed 5 days ago, and I am looking for a good hand surgeon and radiotherapy provider. I am in central Florida (the Orlando area) and willing to travel (wherever I need to go) to be treated by an experienced physician in DD. My diagnosing physician did not mention radiotherapy as an option, did not check my feet, and said "just wait and see how it goes." I am in the early stages he said. My lumps are mostly pretty soft in my hands, and I have no contracture at this time. From what I have read, if I get radiotherapy soon, I might arrest the progression of this disease in my hands. But, radio therapy seems either controversial or new or both.....I am scared and confused and have read lots in the last 5 days. Can you all guide me please so I can find a knowledgeable experienced physician to guide me?

Edited 04/16/17 22:52

04/16/2017 20:46
spanishbuddha 

Administrator

04/16/2017 20:46
spanishbuddha 

Administrator

Re: advise please how to find good hand surgeon and radiotherapy

Most hand surgeons will not recommend RT for DD, and instead suggest wait and see, or wait for a contracture then have surgery. RT is only effective in early stages AND active ongoing progression of the disease. For the majority of people DD progresses slowly and never leads onto a contracture, so you want a physician who knows that fact, and also knows about the early stage non-surgical treatments. We list some on the treatment pages of the website including radiologists, in Florida. Most US people phone their nearest oncology centre and ask for a radiologist experienced in treating DD. You don't say much about your diagnosis, stages, and why you are seek RT now. I usually suggest people start a photo log with symptoms, weekly or monthly, whilst you do your research and seek the appropriate help; there is usually time and your log will provide a useful objective record on the rate of progression.

Edit to add I did a quick search and found others have seen Dr. Lawrence Hochman of Florida Cancer Affiliates regarding radiotherapy.

Edited 04/16/17 23:58

04/16/2017 23:35
LindaSusan 
04/16/2017 23:35
LindaSusan 
Re: advise please how to find good hand surgeon and radiotherapy

Thanks very much for your quick response, SpanishBudda!

I am in central Florida. I am willing to go wherever I need to go to find a physician who is knowledgeable and practiced with DD. The physician need NOT be in Orlando altho that would be convenient.

I believe that my DD is in the early stages as (1) that is what the physician said, and because (2) most of the lumps are soft and because (3) I have no contracture at this time.

I am seeking a knowledgeable physician to guide me now as I don't want to return to the one who diagnosed me. I am seeking RT because I don't want this to get worse, and it is worse now than it was a couple months ago.

Can you advise the best way to find a good physician who is knowledgeable and experienced with DD to help me (short of going to Germany)?

Many thanks!

04/17/2017 06:46
spanishbuddha 

Administrator

04/17/2017 06:46
spanishbuddha 

Administrator

Re: advise please how to find good hand surgeon and radiotherapy

LindaSusan:
Thanks very much for your quick response, SpanishBudda!

I am in central Florida. I am willing to go wherever I need to go to find a physician who is knowledgeable and practiced with DD. The physician need NOT be in Orlando altho that would be convenient.

I believe that my DD is in the early stages as (1) that is what the physician said, and because (2) most of the lumps are soft and because (3) I have no contracture at this time.

I am seeking a knowledgeable physician to guide me now as I don't want to return to the one who diagnosed me. I am seeking RT because I don't want this to get worse, and it is worse now than it was a couple months ago.

Can you advise the best way to find a good physician who is knowledgeable and experienced with DD to help me (short of going to Germany)?

Many thanks!
Dr Hochman, mentioned in my previous post, comes up time and time again as experienced in treating DD with RT. There is also a Dr Wolfson in Miami.

Also check out this post referring to a Dr in Jacksonville http://www.dupuytren-online.info/Forum_E...ida-0_2176.html

Edited 04/17/17 10:11

04/17/2017 12:41
wach 

Administrator

04/17/2017 12:41
wach 

Administrator

Re: advise please how to find good hand surgeon and radiotherapy

Clinics providing RT are listed on http://www.dupuytren-online.info/radiotherapy_clinics.html . For general consultation you might consider one of the NA doctors listed on http://www.dupuytren-online.info/NA_list_North_America.html .

Wolfgang

04/17/2017 12:52
LindaSusan 
04/17/2017 12:52
LindaSusan 
Re: advise please how to find good hand surgeon and radiotherapy

Good, good thanks to have names and websites to go to...Thanks so much for your good help everyone!

04/17/2017 20:57
Stefan_K. 
04/17/2017 20:57
Stefan_K. 

Re: advise please how to find good hand surgeon and radiotherapy

spanishbuddha:
[...] RT is only effective in early stages AND active ongoing progression of the disease.
If I may I would like to quickly comment on this statement. My own RT treatment was decided and performed by Prof. S. in Hamburg almost 10 years after I noticed my first nodule and more than a year after its cord was cut by NA, and it seems to have been successful so far. There were new nodules forming in the treated area of that palm without which the doctor may not have decided to treat the hand. But they weren't particularly active, either, and they all seem to have gone away. The conclusion for treating or not may be the same, but rather than effectiveness isn't the reason for treating primarily early stage, active nodules and cords that older nodules are too large and hard to go away (although they might shrink, soften and/or flatten) and that you don't want to use up the radiation dosage judged safe before knowing that small nodules will indeed cause problems?

Stef

[55 year-old male, DD diagnosis 2006, RH contracture and NA/PNF 2014, RT 2015, wearing night splint glove]

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