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Found out today
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11/24/2010 04:44
Dboomac 
11/24/2010 04:44
Dboomac 
Found out today

Well nothing like hitting below the belt.......I found out today that I too have Dupuytren's in my left hand, and a start in my right. Not happy, but I'm going to be very pro-active with it. After reading allot of the threads, I'm concerned that there isn't any doctors in the USA that use the same curing process as is done over-seas. When the doc seen me this morning, he stated not to worry until I would get some bend in the fingers ( I wasn't impressed with that) then we could look at surgery. He also explained about the injections that came out in April of this year, BUT have not been approved by the FDA. ($3500.00 a vial)

I have seen the surgery on some fellow workers, and all I can say is.....HOW UGLY!! One of the guys hand is just a mess after the butchering.....but he stated it was better than having rolled up fingers.......I call BS.

I need some good feedback that would keep me in the USA if possible. Don't take me wrong, if I could afford the trip to Germany, I would be there in a heartbeat. I thank you all in advance for your suggestions and support..........

Db

11/24/2010 12:06
Calk 
11/24/2010 12:06
Calk 
Re: Found out today

Xiaflex has been approved by the FDA. Look on this site under "collagenase injection", type in your zip code and it will list doctors trained to give the injection. It also tells if they are experienced, which is VERY important!

11/24/2010 16:46
Mike S

not registered

11/24/2010 16:46
Mike S

not registered

Re: Found out today

In my opinion, you have several options that are preferable to traditional open hand surgery:

1. Radiotherapy - Painless but time consuming (elapsed time = several weeks) and expensive treatment that is thought to be effective in stopping the progression of the disease. Best used in the early stages. Leading practitioners include Scripps Institute in La Jolla (San Diego) CA and others.

2. NA (needle aponeurotomy) or Xiaflex injections (new) to "release" any contractures once they have formed. Of the two, NA is less expensive and older (I had it done in 2006); Xiaflex was recently approved. There are currently app. 20 US practitioners of NA, and many more who now offer Xiaflex.

3. Depending on your insurance, you may have most of your medical cost covered for any and all of the above (including radiotherapy).

4. Lists of NA and Xiaflex practitoners in the US are available at this site.

11/24/2010 17:08
callie 
11/24/2010 17:08
callie 
Re: Found out today

The advice you were given was good. Many people with Dupuytren's never have a further advancement to significant contraction. There are many options for dealing with the disease. Surgery can be a very good option, but it is an individual decision. I would now choose surgery again because it was very successful for me. After almost nine years after surgery I have no sign of Dupuytren's in my affected hand.

11/24/2010 19:57
lori 
11/24/2010 19:57
lori 
Re: Found out today

Where are you located? I know Dr. Crimaldi in Charlotte, NC follows the German protocol and so does Dr. Weiss in Virginia. They might not have the same experience in the amount of people they have treated, but I felt like Dr. Crimaldi was
knowledgeable. He had treated DD in the past and knew how to treat it. Mine was in the beginning stages and all I had was a nodule, puckering, and the cord was beginning to pull my middle finger down towards my palm. I would go back to him for treatment again if it comes back. I was also ready to go to Germany, and had Dr. Crimaldi not made me feel comfortable with his knowledge and experience, I would have been on a plane in a heart beat.

We each have to treat this disease in the way we each feel comfortable. Thank goodness we have choices. Without this forum
and the feedback people provide I feel it would have been scary to make a treatment decision.

Regards,


Lori

11/24/2010 21:43
spanishbuddha 

Administrator

11/24/2010 21:43
spanishbuddha 

Administrator

Re: Found out today

Take heart.

As someone else says, in some people it doesn't progress, or progresses very slowly.

Start a log, with photo's and if it's active seek treatment suitable for early stage DD.

Radiotherapy seems to be the best based on feedback on this site, then perhaps Xiaflex or NA if there are nodules or some contracture.

I'm like you and being positive. Also as someone else said, there could be much worse things.

11/24/2010 23:46
LubaM. 
11/24/2010 23:46
LubaM. 
Re: Found out today

Everyone above has given you good advice.

Surgery has been successful for some, and when its successful, it does seem to have a lower recurrence rate than NA (we don't really know about Xiaflex because its so new)....., but it would be a "last resort option" for me. Unfortunately, I have seen "operated hands" and it has turned me off to surgery.

From my own experience, radiation therapy is the way to go for early stages of Dupuytren's and/or Ledderhose (same disease in the sole of your feet). I had successful radiation therapy over a year ago and it has stopped the progression of the disease, so far.

Once you start getting a contracture, then the choices of NA, Xiaflex or surgery are up to you. Get all the information you can from this site, or the internet....and go with your gut feeling. Only you can make the right choices....

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aponeurotomy   suggestions   experience   Xiaflex   Radiotherapy   Unfortunately   Dupuytren   knowledgeable   contraction   contractures   collagenase   contracture   successful   comfortable   practitioners   practitoners   progression   treatment   traditional   surgery