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Just diagnosed - Wait or do something?
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03/16/2008 20:23
Guitarman 
03/16/2008 20:23
Guitarman 
Just diagnosed - Wait or do something?

My doctor has just diagnosed me with Dupuytens. At the moment it's just a small lump on my right palm. He recommended for me to do some research on the net, so here I am.
What I really want to know is is it worth doing something about it at this very early stage or to leave it a while?
I read on the societies web site about the possible success of radiation tratment. Is this worth considering and would my doctor be able to refer me?
My concern is that my living is tied in with playing the guitar. It's in my right hand so maybe not quite as bad but I would appreciate any advise you can offer. Guitarman age 46

03/17/2008 03:06
Sandie1141 
03/17/2008 03:06
Sandie1141 
Re: Just diagnosed - Wait or do something?

Hi Guitarman, Welcome.

I'm Sandie, my husband had the NA procedure last June. He is 52 and waited way too long to get treatment. He conplained about the lumps in his palm for a couple of years, then when he showed it to our primary doctor, the doctor told him there was nothing he could do about it.

2 years later my husband was said that he was embarrassed because he couldn't shake hands, put on gloves, etc. Tthe primary doctor referred my husband to a hand specialist. The specialist said that he needed surgery and that it would be approx 2 weeks for recovery. The specialist never mentioned NA. He did mention the trials (that at the time had been stopped and was due to begin within the year) but he said that my husband's contracture was too advanced for him to be a candidate for the trial. I started doing research and found this site.

Our insurance didn't cover the procedure, so we had to pay out of pocket. We flew from Denver to Boise to have the NA procedure done by Dr. David Kline. The one thing that I loved about Dr. Kline is that he too has Dupuytren's himself. He is an emergency room physician, so you know how important his hands are to him too. When he had the NA performed, no one was doing it in the US, so he had to travil to France to have the procedure done by a physician who had been doing it for years over there. Dr. Kline was so happy with the procedure that he went back over and was trained by the physician that performed his procedure.

Here is his website: http://dupuytrenscenter.com/

You can go out on youtube.com and see the procedure being performed by Dr. Kline. Also go out and search for pictures and descriptions of the sugery. It's fairly a "no brainer" which way to go.

Feel free to ask any questions you may have. No one here is in it for personal gain. We are all here to share our experiences and knowledge.

God's speed. Sandie

03/17/2008 06:05
newman 
03/17/2008 06:05
newman 

Re: Just diagnosed - Wait or do something?

Hi Guitarman-Australia Calling welcome to the forum,
First thing don't be in a rush you sound at though you are in the early stage with a nodule in the palm. We all have different stories to tell. In my case diagnosed at 35 yrs and surgery at 50 yr. There were no other options. Have a look at the forum I posted on 28/2/08 "seeking Advice about treatment for nodules...."
It may be that you are in the 'watchful waiting period' Radiotherapy certainly is an option . I had treatment in Germany with good results.Radiotherapy works best on nodules before the formation of any cords. For some insight into cords go to http://www.dupuytren-online.info click on 'surgery-techniques -scroll to 'nodule fasciectomy click on the full article from 'Luck 1959 ' whch is a large pdf file. This will give you some insight into what happens. The article is still relevant today. The more informed you are the better.
Try and access a book "Radiotherapy for Non-Malignant Disorders" by Seegenschmiedt (Springer Publication ) You will be really informed then about Radiotherapy. Check out the same web page 'Dup/Soc."on radiotherapy. You have the advantage that you are seeking information now and not having to rush into something. You may want to even go and see Prof Seegenschmiedt in Germany and have a holiday at the same time . Regards from down under.

Edited at 17.03.08 10:12

03/17/2008 13:50
TrevB 
03/17/2008 13:50
TrevB 

Re: Just diagnosed - Wait or do something?

I started off about 3 years ago with one small nodule and now have 3 on the ring finger (I'm 48 later this year) plus a small cord in the palm, a couple of nodules starting on my little finger & 2 very small nodules on my 3rd finger (no contracture as yet, with full hand movement but occasional tightness in the palm). I don't have a passport but do have mobility problems so I'm looking ar radiotherapy in the UK (only one known site). I've a letter to send to Poole but I'm dragging my feet. I dislike all things medical and am quite scared of putting the wheels in motion on something I don't really understand. I don't really want to wait either because it's fairly clear what the end result is likely to be and I think that I'm still in time to consider radiotherapy to slow down or better this disease.

I'm sure that there are people who've had a fairly easy ride with this disease and been happy with their treatment but those stories are hard to find. Happy people sadly tend not to post, only those looking for answers Or perhaps that's a touch harsh?

Edited at 17.03.08 16:25

03/17/2008 19:32
SteveAbrams

not registered

03/17/2008 19:32
SteveAbrams

not registered

Re: Just diagnosed - Wait or do something?

I had NA done by Dr. Eaton over three years ago and I am extremely happy with the result.

Steve Abrams

03/21/2008 22:46
lumpy 
03/21/2008 22:46
lumpy 
Re: Just diagnosed - Wait or do something?

i was diagnosed 3 years ago. I had the NA procedure done by Dr. Pess on Wednesday, two days ago. he used 4 needles to breakup the contracture, which had progressed slowly but regularly since then. The cord was about an inch and a half long The time was right to follow through Of course, too early to draw a conclusion, but right now hand is a little sore but I have very good mobility. there is slight bruising and 4 tiny marks from the needles. I'll post regarding my progress.

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