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Just Diagnosed with Dupuytren's Disease
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03/12/2014 21:51
Mike007 
03/12/2014 21:51
Mike007 
Just Diagnosed with Dupuytren's Disease

Hi,

My name is Mike and I was just this week diagnosed with Dupuytren's Disease. I am 29 years old living in the United States (NJ), but relocated from the UK several years ago. Dupuytren's runs in the family on my mother's side, but I never really thought that I would be impacted by it at such a young age.

The doctor (hand and wrist surgeon) I went to recommended taking no action until I fail the table-top test. I have one nodule in the palm of my right hand under my ring finger, and a cord forming under the nodule towards my wrist. To my knowledge I do not have any other nodules or cords at this stage. There is no pain but some occasional discomfort from the nodule. Thankfully none of my fingers have begun to contract.

I have found this Website to be really useful over the past few days and it looks as if I MIGHT be able to benefit from radiation therapy treatment since the disease is in its infancy. Can any of you recommend what I should do? I appreciate that everyone is different and that I have not provided a lot of information to go on, but the prospect of not being able to use my hands properly later in life is a scary one.

I saw a list of clinics providing radiation therapy and the closest to me is Dr. James Wong at Morristown Medical Center. Has anyone on this site had a consultation with Dr. Wong or been treated by him and his staff? If so, would you mind sharing your experience with me? You may contact me privately if you do not wish to share on this forum.

Thanks in advance for any help or guidance you are able to provide.

Regards,
Mike

Edit: I forgot to mention, I first noticed the nodule on February 1st and it is approximately 1cm (0.4 inches) in diameter.

Edited 03/12/14 23:55

03/13/2014 07:35
spanishbuddha 

Administrator

03/13/2014 07:35
spanishbuddha 

Administrator

Re: Just Diagnosed with Dupuytren's Disease

Welcome Mike

You might want to hold off on RT for a while as you're quite young. Not too young, but instead do an an active 'wait and see' whereby you keep a weekly or monthly log or record of symptoms, including physical changes, with photos, so you have objective evidence of progression and rate of progression; and current activity since RT is most effective during an early cycle of activity. In the meantime do search out a doctor or radiologist who might treat you when your symptoms from the log indicate the time is right. The condition does flare and settle too, so it can be tough call to make.

Also see if any lifestyle changes are needed that pre-dispose you to the condition, maybe not, but start taking care of your hands.

Best wishes
SB

Edited 03/13/14 09:37

03/13/2014 17:37
griffin77 
03/13/2014 17:37
griffin77 
Re: Just Diagnosed with Dupuytren's Disease

HI mike // I would checkout kenalog injections into the nodule(s). I had a nodule form about 7 months ago and had 3 sets of kenalog40 injections 5 wks apart and it has softened and shrunk it in half. if caught early it can stop the progression ,soften, shrink and even eliminate the nodules. I found a doctor in Orlando fl who agreed to try this I had been to 2 other hand docs who said it doesn't work I asked them if they had treated patients and found it was ineffective they said they never used it they had heard it didn't help I decided to go with the 40+ yrs of research that says it can if u do it soon enough// take care/ Terreck

03/13/2014 17:45
wach 

Administrator

03/13/2014 17:45
wach 

Administrator

Kenalog and Ledderhose Disease

You might also have a look at http://www.dupuytren-online.info/dupuytren_steroids.html . Kenalog might not be a long term solution but it can be a relief in painful and debiliating situations.

Wolfgang

griffin77:
HI mike // I would checkout kenalog injections into the nodule(s). I had a nodule form about 7 months ago and had 3 sets of kenalog40 injections 5 wks apart and it has softened and shrunk it in half. if caught early it can stop the progression ,soften, shrink and even eliminate the nodules. I found a doctor in Orlando fl who agreed to try this I had been to 2 other hand docs who said it doesn't work I asked them if they had treated patients and found it was ineffective they said they never used it they had heard it didn't help I decided to go with the 40+ yrs of research that says it can if u do it soon enough// take care/ Terreck


Edited 03/13/14 19:45

03/13/2014 22:49
BRIANB 
03/13/2014 22:49
BRIANB 
Re: Just Diagnosed with Dupuytren's Disease

had nodule injections in conjunction with N.A, reduced - eliminated nodules ... one injection was 6 weeks prior to n.a.

03/13/2014 23:02
Jolene 
03/13/2014 23:02
Jolene 
Re: Just Diagnosed with Dupuytren's Disease

hello Griffin
what doctor in Orlando did this for you? Do you have any pics to post. How large was your nodules and did they have cords attached?

Look forward to hearing back from you

03/14/2014 00:20
griffin77 
03/14/2014 00:20
griffin77 
Re: Just Diagnosed with Dupuytren's Disease

HEY// have one nodule on rt hand below ring finger with a 1/2 inch cord below and a 2 inch cord below middle finger/ am going to consul for RT on cords and remaining nodule tissue/ it is softer and smaller after kenalog/ the doc was George papanicolaou MD the first set of injects was not the right amount (concentration) of kenalog 40 in the syringe on the 2 the 3rd was the right amount/ I was the first patient that this doc had done injects for DD so after getting guidance from dr ketchum in kanas city who is one the most experienced with kenalog 40 for DD nodules the 3rd inject was the proper amount in the syringe but only nodules can be injected that's why want to see if RT can help with the cords and remaining nodule tissue but I read that they cannot be too hard and need to be active also /going to dr hochman in new port Richie fl for consul (RT) so wish me luck k

03/14/2014 10:59
Jolene 
03/14/2014 10:59
Jolene 
Re: Just Diagnosed with Dupuytren's Disease

Hello Griffin77,

Dr. Hochman is who treated me. I had RT on all 4 limbs.

He knows me well. I did a blog about his office. Awesome staff, Awesome doctor

http://plantarfibroma.blogspot.com/

Please let them know we have touched base.

07/14/2014 19:16
Faith 
07/14/2014 19:16
Faith 
Re: Just Diagnosed with Dupuytren's Disease

hi

You probably already did something, but I had radiation therapy with Dr. Wong and so far so good(six months after the second round). He's very nice and the facility is very good too.

Faith

07/14/2014 22:48
griffin77 
07/14/2014 22:48
griffin77 
Re: Just Diagnosed with Dupuytren's Disease

hi faith// I never made it for RT consul/ just been using a special formulated cream which is helping/ will be trying another type of topical cream to help disolve the scar tissue /so what have u noticed so far with the RT there just seems to be so many varibles with that treatment i. e. is it active enough to help? how hard are the nodules and cord cause if they are too hard it can make things worse etc so wish u well with it

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