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another newbie to the site
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03/31/2010 23:57
related 
03/31/2010 23:57
related 
another newbie to the site

I have had Dupuytren's Contracture in my right hand for about 6 years. It has progressed so that I have large connected nodules in my little finger and the outside edge of my palm. The finger is bent about 30 degrees and I cannot straighten it. My other fingers are not effected, but I cannot lay my hand down flat on a table. I also have contracture around my thumb drawing it inward and nodules between my thumb and pointer finger. Now I am beginning to see nodules below my little finger on my left hand. I call that my good hand. I can lay it flat on the table and feel no tightness.

I live in Oregon and so far have not found a doctor who is knowledgeable about this disease. I am interested in finding a doctor who is knowledgeable about needle aponeurotomy for my right hand which has progressed with this disease, and perhaps radiotheropy for my left hand where the disease is just beginning to take effect. I have learned a lot on this site. Because of reading here I am more hesitant about massage and exercise for the hand to deal with this disease. Anyone have more opinion on this issue?

I've been reading about the related diseases to Dupytren's Contracture and now I can connect other problems I've had or are having to this disease! For so long I've felt many of my afflictions were not related. But now I find all these relationships. I have suffered from Peyronie's Disease, but seem to be able to control it so that its effects are not an issue with taking vitamin B complex and E. The effects of this disease disappeared within a few months. I have suffered from frozen shoulder (related to Dupytren's D.) and manage that with exercises. Also I suffer from pressure on my median arm nerves. I feel occasional numbness in my hands and wrists when driving or on the computer. I cannot ride a bicycle anymore because of this affliction. I read on this site that this is also related to Dupytren's D.

I am looking for some good professional diagnosis of my hands and of course the related conditions I'm just now realizing they are all connected! I would appreciate feedback and more knowledge!!

04/01/2010 05:22
wach 

Administrator

04/01/2010 05:22
wach 

Administrator

Re: another newbie to the site

I am not aware of anyone doing NA in Orgeon but it's an outpatient treatment anyway and if you are prepared to travel you can find doctors listed on the menu on the left side or directly under http://www.dupuytren-online.info/NA_list_North_America.html.

Wolfgang

04/01/2010 05:46
related 
04/01/2010 05:46
related 
Re: another newbie to the site

Thanks Wolfgang. I did find listed where you said to look a Dr. David Kline at a clinic in Boise, Idaho. He does NA. There are some testimonies about him in older postings. This seems to be the closest clinic to my home that offers NA and is devoted to working with Dupuytren's disease.
Related

04/01/2010 21:24
flojo 
04/01/2010 21:24
flojo 
Re: another newbie to the site

You might also consider Dr. Denkler in Larkspur, CA. If it is hard to fly into Boise from where you live, it may be easier to see Dr. Denkler. He is also very good. He's near the San Francisco airport. Don't know if you're in east or west Oregon, but if you can fly Southwest into San Francisco (or even Oakland), it's usually quite cheap. You could fly into either Oakland or SF, rent a car, drive to Larkspur, get the procedure, drive yourself back to the airport and fly back in the same day.

Email pictures of your hand to Dr. Denkler or Dr. Kline and they can tell answer questions about what NA can do for you.

04/01/2010 23:15
related 
04/01/2010 23:15
related 
Re: another newbie to the site

Thanks flojo. I will e-mail a picture of my hand to Dr. Denkler and see what his opinion is. -related

04/02/2010 12:57
Jill 
04/02/2010 12:57
Jill 
Re: another newbie to the site

related,

Dr. Kline will also be happy to review your case, and we do have a network of radiation doctors we use all over the western USA and specifically as well, Portland/Seattle area too if you decide you would like to go that route.

Just email or snail mail a palm view and side view of your hands.

--Jill at Dupuytrens Center


www.dupuytrenscenter.com

04/02/2010 18:59
dan 
04/02/2010 18:59
dan 
good site

Have just started to follow this site. I'm scheduled for NA with Dr Scott later this month in Chicago. I had NA in October 2006 by Dr Bourland with Orthomemphis in TN. Was satisfied but like others, it has come back. Decided on Dr Scott because it's closer to Mpls.
I have a son that had surgery four years ago and it is starting to come back. He had a much longer recovery time. Didn't know about NA then but wish he had. I sure had to dig around to find out about NA.

Stony Brook University in NY has discovered a new procedure using collagenase injections that should receive FDA approval soon. Don't know too much about it.

Good luck to everyone and keep up the research to find out what would work best for you.

04/03/2010 05:05
wach 

Administrator

04/03/2010 05:05
wach 

Administrator

Re: another newbie to the site

Hi Dan, the treatment developed at Stony Brook has recently been approved by the FDA. You can find more details on it on our web site: just click on "Collagenase injection" on the left menu. Prof. Badalamente, one of the developers of collagenase injection, is actually also member of our Advisory Board http://www.dupuytren-online.info/dupuytr...sory_board.html.

Wolfgang

Quote:



... Stony Brook University in NY has discovered a new procedure using collagenase injections that should receive FDA approval soon. Don't know too much about it.

Good luck to everyone and keep up the research to find out what would work best for you.




Edited 04/03/10 08:07

04/04/2010 05:55
related 
04/04/2010 05:55
related 
Re: another newbie to the site

Hi Dan-
I contacted Dr Kline in Boise, Idaho. I sent him pictures of my hands. I'm interested in NA to straighten my fingers. Dr. Kline also suggested radiation treatments which I can do in my own home town within 72 hours of having needle aponevrotomy to straighten the fingers. He says this will stop the progression of the disease, so once straightened further contracture will not occur. I looked at videos of the collagenase injection linked to this site. This seemed about equal to the NA. Less mechanical, but yields similar results. Keep me posted on what you decide to do and the results!
-Related

04/04/2010 07:35
wach 

Administrator

04/04/2010 07:35
wach 

Administrator

Re: another newbie to the site

Hi related,

I don't want to contradict Dr. Kline but you ought to be aware that there is no evidence (yet?) that radiotherapy after NA will eliminate recurrence. This is just a claim and so far, to my knowledge, data substantiating this claim have not been reported anywhere. Recurrence after NA is certainly an issue, e.g. van Rijssen et al. observed recurrence on 2/3 patients after about 3 years (http://www.dupuytren-online.info/NA_training_literature.html). It would be great to have a remedy for this issue but hoping that RT does it might just be wishful thinking. If Dr. Kline has data to substantiate his statement please ask him to publish them!

Now one might think "even if we are not sure about it, why not do it, just in case it might help". There are two reasons why I wouldn't do it (and why I am posting this): Radiation always increases the risk of cancer. Even if this increase is small it is still advisable to minimize the radiation exposure. Radiating a hand without knowing whether there is benefit to it doesn't sound good to me. The other reason is that you can radiate a specific area only once (if the dose is halved you may do it twice). Should you actually get Dupuytren's in that area sometimes later you have lost the option to radiate it.

Wolfgang

Quote:



... Dr. Kline also suggested radiation treatments which I can do in my own home town within 72 hours of having needle aponevrotomy to straighten the fingers. He says this will stop the progression of the disease, so once straightened further contracture will not occur. ... -Related


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