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Newly diagnosed-RT ??
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08/11/2010 12:46
casaNM 
08/11/2010 12:46
casaNM 
Newly diagnosed-RT ??

I was diagnosed a couple of weeks ago by orthopedic surgeon after my husband (a GP) suspected DD. The ortho doc pretty much said there was nothing much to do except surgery in extreme contracture stage. He suggested cortisone shot and gave me one in a nodule. He said it may delay the growth. I could not beleive there was nothing to do but wait around for a deformity--so thank goodness I did an internet search and found this site.

I can see/feel 2 nodules, about pea sized, underneath my ring and middle finger with a slight v beginning to form in my left hand. I think I might be early 1 stage. I think I still might be a candidate for RT. My questions: Is there any RT in New Mexico? Have folks had any problems with insurance coverage? Has anyone tried/trying changes in diet as indicated in "alternative treatments"?

I am going to see a hand specialist in Santa Fe, NM but I REALLY want to jump straight to RT....

Like many here--no history, very healthy--in fact I didn't see a doctor as I thought these were callous related to biking. THX--

08/11/2010 14:17
flojo 
08/11/2010 14:17
flojo 
Re: Newly diagnosed-RT ??

It sounds to me like you are at the early stages and that RT would be a very viable treatment option. I had mine done at Scripps LaJolla/San Diego with Dr. T. He has done quite a few and really knows what he is doing. Uses electron radiation.
I had RT done 13 months ago and it has stopped progression so far. I had nodules in every quadrant of my palm with some contracture that I had released by NA with Dr. Denkler before I had RT. Dr. T radiated my whole palm, MC joints and up into my thumb almost to the next joint. My thumb was the most involved and there was (still is a little) contracture/tightness across my palm to the little finger. Didn't know about RT before the contracture occurred or I would have had RT to hopefully avoid any contracture at all.
No problem with insurance - Medicare is my primary and Anthem Blue Cross secondary. Medicare coverage may be useful information with your insurance if you have any problem.

Glad you found this site. Mine had progressed for about a 1 1/2 years before I found this site. There is great support and links to many resources.
I don't see any clinics listed for RT in New Mexico. You can find posts on this site by some people have found local radiologists who were willing to research about RT and consult with others who already do it and have been very pleased. If you can take a "vacation" to San Diego to get RT by Dr. T would be great. Or maybe your husband can arrange something educational in San Diego.
I eat healthy anyway, exercise, etc. so I haven't found any changes that seem to me would make any difference. I think it's just the luck of the draw that I got the genes - neither of my two brothers have it. I hope research will come up with something.
I have educated my GP, dermatologist, dentist, PT, my husband's orthopedist and any practitioner who might have patients with DD. They only knew what you knew - wait until deformity and then have surgery. They have all been pleased to know about NA, RT and this website to pass on to their patients. They have been amazed and pleased with what it did for my hand. GPs particularly need to know about these treatments.

08/11/2010 14:20
PhilipHa1 
08/11/2010 14:20
PhilipHa1 
Re: Advice on getting padded gloves for biking

Casa,

I can't advise you about RT treatment in the US, although I did have RT treatment myself in Germany 10 years ago.

If you are a biker my advice is to look carefully at finding gel cycling mitts with the best padding you can find, I personally use Trek Mobi mitts. I blame my DD on a combination of family genetics and biking and rock climbing....I first noticed a nodule when I was biking around New Zealand (without gloves), and I think it was this 'trauma' which triggered the first nodule. So maybe if you bike alot then finding good gloves may be a short-term answer. The RT treatment appears to have been succesful for myself; although I have stopped rock climbing I continue to mountain bike without any problems (including a recent trip to Nepal).

Philip

08/11/2010 16:00
LubaM. 
08/11/2010 16:00
LubaM. 
Re: Newly diagnosed-RT ??

Casa,

Good advice from Flojo and Phillip above....Like Flojo, I too had RT with Dr. T. in LaJolla, CA nine months ago. So far, good results it seems to have stopped the progression of my Dupuytrens in left hand and Ledderhose in left foot.

On my right hand I had a contracture of the small finger....I had four different surgeons I consulted through the years tell me to wait until the finger is totally contracted and have surgery, that it was the only solution. NOT TRUE...waiting is a big mistake.

My finger continued to contract and in 2006 after I found this forum, I decided to do NA instead of surgery...I had NA twice on the contracted small finger in my right hand, but unfortunately the contracture keeps coming back. I wish I had found this forum sooner, I would have not waited and would have had RT on my right hand when it was in the early stages.

08/11/2010 17:08
Larry 
08/11/2010 17:08
Larry 
Re: Newly diagnosed-RT ??

I think there is a difference from the treatmentz in LaJolla (Dr. T.) and Prof. Seegenschmiedt in Germany.
The group in California treat for 2 weeks 10 sessions which is more risky for early and late side effects
than using the "German concept" of 10 sessions given in 5 sessions separated by 3 months. The person
to contact would be Prof. Seegenschmiedt in Hamburg (Germany) who has treated several hundreds of
patients including myself (because of Morbus Ledderhose). Did you look if you have Morbus Ledderhose
as well ? Has your doctor examined you for both ? Only few doctors really know to ask the right questions
and do the appropriate examinations ....

So just be careful and get an appropriate examination and evaluation of your case ... before doing anything!

08/12/2010 00:24
casaNM 
08/12/2010 00:24
casaNM 
Re: Newly diagnosed-RT ??

Thank you for the great responses. I will look into the gel mitts for biking. Interesting as I climb to (though more ice than rock). But I stopped again to mitigate any further "damage". My husband called major hospital in Santa Fe and Univ of NM Hopital in ABQ and spoke with hand specialist/radiology depts at both. I am shocked at how little they knew and universally felt RT was not a very good option. One does NA and UNM-H is "beginning" NA option. We also called univ. of Okla (closest) to speak w/ their radiology dept. (vaca til Fri.). My ortho dr. did not check foot or hand. This is very good to know--again thanks.

08/12/2010 03:36
flojo 
08/12/2010 03:36
flojo 
Re: Newly diagnosed-RT ??

Larry, I think the key to radiation is how much radiation is actually given. Electron beams used at Scripps is different from x-ray used in Germany and, I believe, the amount given 5 days in 2 consecutive weeks is actually less radiation. I believe mine was 1.8 Gy times 10 days for a total of 18 Gy. The risk for cancer is about 1% after 20 years and only for the specifically radiated area.. Because of the low dosage that was given, it could be given again in the radiated area, but I hope I never need it again. I lean toward the lowest dosage that does the job. Electron radiation is very specific as to depth into the tissue and no surrounding areas.

Dr. S in Germany is certainly highly recommended and he probably has treated more patients with RT than anyone. He has studied and researched RT for Dupuytren's. He is definitely a good doctor.

08/12/2010 03:40
flojo 
08/12/2010 03:40
flojo 
Re: Newly diagnosed-RT ??

Casa,
After you finish making your contacts, I'm betting that there will be a list in the left column for Oklahoma practitioners for all treatment options for DD! Good for you! We need to educate the medical profession about alternatives to surgery for treatment of Dupuytren's. Thanks for your efforts.

08/12/2010 08:04
PhilipHa1 
08/12/2010 08:04
PhilipHa1 
Re: Article on rock climbing and DD

Casa,

If you are interested there was a post about 8 months ago on DD and impact sports:

http://www.dupuytren-online.info/Forum_E...rens-0_721.html

in it there was a reference to a paper on DD and rock climbing which makes 'interesting' reading:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1725323/

On the subject of gel mitts, I use them whenever I am doing anything which impacts on my hands, so also down the gym and gardening!


Philip, UK

08/12/2010 08:07
Larry 
08/12/2010 08:07
Larry 
Re:Higher versus lower single doses is important !

flojo:
Larry, I think the key to radiation is how much radiation is actually given. Electron beams used at Scripps is different from x-ray used in Germany and, I believe, the amount given 5 days in 2 consecutive weeks is actually less radiation. I believe mine was 1.8 Gy times 10 days for a total of 18 Gy. The risk for cancer is about 1% after 20 years and only for the specifically radiated area.. Because of the low dosage that was given, it could be given again in the radiated area, but I hope I never need it again. I lean toward the lowest dosage that does the job. Electron radiation is very specific as to depth into the tissue and no surrounding areas.

Dr. S in Germany is certainly highly recommended and he probably has treated more patients with RT than anyone. He has studied and researched RT for Dupuytren's. He is definitely a good doctor.

If you look in the literature ...higher single doses seem to address fibroblasts better than lower single doses ...
There is literature on using RT for hypertrophic scars or keloids or peyronie's disease or on treating coronary arteries
after balloon dilatation and more ... also read the book chapters

http://www.dupuytren-online.info/radioth...literature.html

http://books.google.de/books?id=tfNdrG80...27s&f=false


I personally have opted for 5 x 3Gy in 2 series up to 30 Gy for both my feet and that did the job well !

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Seegenschmiedt   Ledderhose   unfortunately   alternatives   dermatologist   hypertrophic   practitioners   radiated   Germany   consecutive   radiation   radiologists   treatment   specifically   electron   contracture   dupuytren-online   diagnosed-RT   progression   deformity--so