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Just Diagnosed...
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05/24/2010 20:39
a-nothaday 
05/24/2010 20:39
a-nothaday 
Just Diagnosed...

Male in my early 30's with no real health problems at all (in the US)--- and within the past few weeks I noticed what I thought to be an enlarged tendon in my hand come up---fairly consistent size from mid-palm up to base of pinkie --also a little puffy area between ring and pinkie, but it is soft----(no contracture with full flexibility - but doesnt "feel" right).. didnt think much about it for a week or so (guy mentality) but then had it checked out-- regular doc thought it was Dupuytren's but that was about all he knew about it and referred me to an orthopedic. I went to a hand specialist and pretty much they said I will have to live with it, nothing i can do about it for now-- and when (if?) it contracts, either surgery or the expensive shot (guessing Xiaflex) are the options-- which no matter how costly it is may be the best way to go...

I noticed on here that there has been talk of radiation therapy - which was not mentioned to me-- is it possible my cord is too enlarged for that therapy or....? and/or is it even practiced in the US-- I was thinking about getting a second opinion as I would like to delay/be rid of any contractures as long as possible...

also-- was thinking about doing excercises or stretching the fingers out straight for periods of time-- any studies if that is good or bad pre-contracture--- I got to thinking it may be bad is it is really making the palm pretty taunt...(anything i can do at all?)

and this may be rhetorical-- but what about normal daily activities or other outdoor "fun" activities which may require exertion with that hand--- is the idea ,"live life to the fullest" and what happens - happens--- or is there something that can make it progress faster/worse...i was told trauma to hand/area would make it worse... yet i imagine we all have a different definition of trauma

thanks

05/24/2010 21:23
callie 
05/24/2010 21:23
callie 
Re: Just Diagnosed...

Stressing the hand will do more damage than good. It doesn't take much out of the ordinary to trigger activity of Dupuytren's. Stretching does not work.

05/25/2010 02:41
flojo 
05/25/2010 02:41
flojo 
Re: Just Diagnosed...

The soft spot sounds like a nodule and Radiation therapy would likely help that. Now is the best time for RT - in the early stages and while it is active Dupuytren's. If you don't have contracture with the cord, you don't need to do anything to that at this point. Radiation therapy will not "fix" the cord but it may keep it from progressing. Read everything in the left column and everything you can on this forum, especially RT and NA. Use the "Search web site" for specific questions that you might have. Also, come back anytime to this Forum and ask questions. The experiences of others helped me make a decision and people are so helpful. You're come to the right website.

05/25/2010 15:02
lori 
05/25/2010 15:02
lori 
Re: Just Diagnosed...

I do a lot of physical labor and play golf and tennis. Even typing, driving and resting my hand on the steering wheel hurt my cord and nodule. So you're right everyone has a different definition of trauma. I wear a padded glove for driving and anything that puts pressure on my palm and that helps a lot. After RT I am just beginning to take back up golf and tennis, but I am wearing that glove. RT softened my nodule, stopped that puckering between my fingers, stopped the pain, and took away that tight feeling. Altogether a success at this point. I agree with Flora, consider the Rt. NO one I saw (3 doctors) recommended RT. In fact I was told RT was not a treatment. I found out about RT on this forum, looked at the research, read the threads from other people who had RT and made the decision to go for it. My DD was progressing rather quickly from a sore spot to a nodule and a cord and puckering in less than 6 months. I did not feel it would stop progressing, and I did not want to miss the window of opportunity to have RT. I felt that once I started to have contracture, I would have to rethink my treatment plan. I was already losing my grip and my middle finger was starting to slightly pull in. All that is gone with the RT. I still have the nodule and cord, but they really don't give me much trouble. I still have problems if I use the hand in a gripping motion. Example: using a screwdriver or pulling up the sheets to make the bed. That still slightly hurts and reminds me that DD is still there.....always lurking.

Regards,


Lori

Edited 05/25/10 18:04

05/25/2010 16:12
LubaM. 
05/25/2010 16:12
LubaM. 
Re: Just Diagnosed...

Flojo and Lori are absolutely right. I had RT for my left hand, and it has stopped the progression, the nodules and puckering are still there but the itching and burning sensation have stopped. Actually I even had a very small cord going from the base to the middle of the finger, and that is now gone. The hand is no longer tight and I can open the hand much wider... the RT has been successful so far.

In my right hand I had NA twice on the same finger, severely contracted PIP joint and a boutonniere contracture in DIP joint. NA worked for me, even though it came back and I had it redone. I would opt for NA before surgery anytime, because of the quick recovery, even though it has a slightly higher degree of recurrence than surgery.

05/25/2010 16:40
jimh 
05/25/2010 16:40
jimh 
Re: Just Diagnosed...

I've been dealing with severe Dupuytren's for 20 years and my conclusion is that nothing you do, or don't do, makes any difference in its progression. Don't beat up the palms of your hands, but other than that, continue as before.

I've had 2 surgeries and 1 NA. It boggles my mind that orthopedists and hand surgeons still don't talk about NA. They're over a decade behind the times, and they've obviously been 'pitched' on Xiaflex - NA is the best treatment choice today.

I've also had Lederhose for 15 years and have just continued to walk, run and cycle as before. It hurts a bit, once in a while. Life is short, and other, more serious problems will show up all too soon, so don't let yourself obsess over Dupuytren's.

05/25/2010 18:48
David26

not registered

05/25/2010 18:48
David26

not registered

Re: Just Diagnosed...

jim, when you say severe, how many fingers on each hand are affected? What type surgeries did you have? WOuld you consider them successful? Thanks

05/25/2010 21:16
jimh 
05/25/2010 21:16
jimh 
Re: Just Diagnosed...

Every finger, on both hands, has been affected to some extent - including both thumbs. I've had 2 conventional surgeries, one on each hand, multiple incisions in each case. I'd call the results mixed. I currently have one pinky stuck at about 60 degrees after surgery, one index finger starting to pull in, and one outer thumb joint at about 45 degrees. Three other fingers were successfully straightened by the surgeries although one sustained nerve damage.

Edited 05/26/10 00:16

05/26/2010 16:14
LubaM. 
05/26/2010 16:14
LubaM. 
Re: Just Diagnosed...

jimh:
It boggles my mind that orthopedists and hand surgeons still don't talk about NA. They're over a decade behind the times, and they've obviously been 'pitched' on Xiaflex - NA is the best treatment choice today.



I agree with Jimh....its incredible how hand surgeons not only don't talk about NA but are against it...I consulted four surgeons over a period of six years and all of them were opposed to NA as well as RT when I mentioned it as a possibility of treatment. I have had both RT for my Dupuytrens on left hand and Ledderhose (so far, successful...has stopped the progression) AND twice NA on the same finger on my left hand (90 degrees PIP contracture is now at about 20 degrees).

Edited 05/26/10 19:16

05/26/2010 19:37
Cerg 
05/26/2010 19:37
Cerg 
Not diagnosed yet but sure of it...

I want to say first off...I dont like doctors or medicine or needles.
I have so many symptoms supposedly complications of diabetes I cant count my diseases any more. My hands are crippling fast. I am 45 year old male.
started with little lumps, now contracture of cords in palms knots on knuckle joints on palm side of my hands. ring and pinky fingers mostly but palms are riddled with lumps especially my left. skin is folding over on my ring finger and making its own pocket in the skin.
I also have erythema nodosum...another great complication of diabetes that makes me have soft tissue lumps under the skin on my waist and between my thighs between my knee and groin. If I bump any fatty tissue it swells with lumps and severe pain.
Does anyone else have those symptoms together??
I am bummed

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