Hello I am from the USA
About 3 years ago I noticed a small lump in the palm of my hand I thought it was a calus from work or something.
Well before I go any further I am 55 yr. Old musician and artist I play guitar and piano and some others.
Anyway last year they started growing and hurting so went to a specialist and he told me it was dupuytren's disease panic set in when I read exactly what it was.
He told me nothing to do about it until I could no longer lay my hand flat or if my fingers started to curl in towards my palm and or the pain was bad when I gripped things.
And then he said at that point it would require surgery and that has its risks more so for me more on that later.
He gave me some hand exercises to do which I do religiously.

Well I have reached that point I can no longer flatten my hand I can no longer extend my ring or middle finger all the way and it is now progressing into my pinky and it hurts pretty darn good. It also seems to be progressing from my palm towards my wrist as I can see the cords thickening that way also.

Today I read on the internet about some kind of radiotherapy on this site others called it radiation therapy and it seems as though that has to be done when it first appears.
Does anyone have any insight to this? My doctor never mentioned it to me.

Anyone who has had the surgery?
What was outcome?
Recovery time?
Any use of hand and or finger issues?
How soon til next surgery?

As the doctor said and everything I have read it will comeback and each time the surgery is less and less effective.

Back to the risks pertaining to me. I have several heart conditions and I have rheumatoid arthritis, regular arthritis, pots syndrome. I don't do well with being put under for surgery in 2013 I had a tia stroke while getting a heart procedure done.

Being a musician this is truly devastating to me just the thought of not being able to make music is unbearable to me. It happens to be in my left hand which is my fretting hand for guitar.

Sorry for the long winded narrative but I am a newbie here?
Any and all input, info and experiences are greatly appreciated.
Thanks in advance for your help and support.
Rhei

Edited 03/22/16 04:32

I have had DD progressing in my left hand since my mid 30s, (I'm now 72) although I didn't know what it was, just assumed it was callouses combined with arthritis and a possible hand injury. About 10 years ago I consulted a hand specialist who confirmed my suspicions of DC and recommended surgery. I was working at that time and couldn't take the three months for rehab so I just toughed it out. When I heard about Xiaflex, I thought it sounded like a good alternative to surgery or needle aponeurotomy so I decided to go the Xiaflex route. had it done 1 1/2 years ago and am very pleased with the results. My ring & middle finger were contracted about 30 degrees, now I can hyperextend my left hand about 30 degrees and I could fully use my hand within a few days after the procedure! I would consult a doctor who has a proven track record in all DC surgeries, NA and Xiaflex and let him/her decide what is best. My DD/DC was never really painful, mostly just a lot of itching.

Welcome to the forum rhei

I hope by now you have found and read the information under the treatment tab on this site? To summarise the proven treatments with an evidence base are RT in the pre contracture early phase, NA or Xiaflex with a moderate contracture where there is a visible or palpable cord, and surgery usually recommended for difficult cases. All these treatments have in general good rates of success in keeping your hand functional. But, there is no cure and recurrence often occurs, and it becomes a question of managing the condition. However for the majority the disease progresses very slowly and does not lead to contracture.

It sounds like you have missed the opportunity, pre-contracture for RT. The only requirement for that is really to be able to lay the hand flat for the equipment (bit like an x ray), and the disease active at the time. There are plenty of personal experience of the treatments on the website under patients tab.

I understand the angst you feel since I play piano, and not being able to reach or arpeggiate an octave chord is difficult. But I recommend you research the options, plan on managing this long term, reduce the risk factors if you have any. It's not a killer and life goes on usually as before once you cope with managing it and having treatment if or when needed . We have had other professional musicians on here before, successfully been treated and they have continued playing their instrument.

This forum is a good support group, and there are others on Facebook. I think between us all we can get you the answers and help you want.

Best wishes
SB

Thanks for the replies.
I have read pretty much everything here very informative and helpful. Wish I had found this when was first diagnosed with dd.

I have some what maybe dumb questions. I feel like after reading so much here that my doctor really has taken a lackadaisical approach to my dd. When he said that there was nothing to do about until I could no longer flatten out my hand and fingers. Well it was painful when I saw him then and even worse now and I can no longer flatten it out.

Does the stretching exercises make it worse?

At what point do you seek out the xiaflex treatment? After fingers are curled to a certain point or before?
My middle,ring and pinky are at about 20 to 30 degrees when I open my hand.

It's not just my fingers I can not open my palm all the way is this normal also with the disease?

My fingers do not hurt but the cord running to my middle finger and the nodules in my palm hurt terribly when I open my hand or use my hand.

It is also causing sharp pain below my palm towards my wrist.

I have extensive dealings with doctors thanks to my other conditions and I know such questions are best answered by professionals but I don't know if the hand doc I have seen is the right guy. And to me their is no better professional than someone who has been thru it themselves.

There isn't a wealth of knowledge on the internet in My area about doctors who do these other treatments such as xiaflex, na and a couple others I have read here.

My doctor only ever mentioned open surgery.

I have been searching the web for hours for alternative treatments in my area and have come up with zip.

Thanks again I appreciate any suggestions and answers.

Edited 03/22/16 15:37

Stefan_K.:

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Rhei, I strongly recommend you see a doctor experienced in NA and Xiaflex/collagenase. Have you had a look at

http://www.dupuytren-online.info/NA_list_North_America.html

and http://www.dupuytren-online.info/dupuytr...e_clinics.html?

Ideally find a doctor or a clinic that is - if not competent for all - at least open to the various treatment options and wiling to refer you further to whoever can help you best. It sounds like you should release the tension that curls several of your fingers by 20 to 30°, then look into night splints instead of or in addition to your stretching exercises. But a competent doctor will give you much better advice after examination, also on the state of your palm which according to what I have seen is not something really common, and the pain (perhaps from your stretching exercises?).

Many of us have suffered from our doctors' lack of knowledge, experience and curiosity about Dupuytren's and not being offered the most suitable treatment options, or not in time. Probably the driving force behind the desire to spread the word and enable others to benefit from the state of science, and help it progress.