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Women with Dupuytren's
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10/20/10 16:17
lori 
10/20/10 16:17
lori 
Re: Women with Dupuytren's

Denise,

I did consider surgery and said no way. I was 53 and research showed that it could make DD more aggressive. I was also not willing to wait until I lost use of my hand to have surgery. My DD was in my opinion aggressive, I was in pain and it was impairing my ability to work. Surgery sounded so severe, has a long recovery and being self employed and using a computer all day, that made me nervous about how I was going to be able to work.

This website provided excellent research as to radiation and the long term prognosis when treating DD when it was active and in the nodule stage, as mine was. Once I began researching other alternatives, I knew that RT was the option for me. To me it was a less intrusive way to start tackling the disease. If it did not work, then I could always look at NA or as a last resort surgery. The RT appears to have worked. I have been in remission for about 14-15 months. I also like the fact that I can have RT again if necessasry. I am pleased with my decision, and feel for me it was the right choice. I would advise you to consider RT if your DD is active as it sounds like it is. RT is less expensive, less intrusive, and allows for several different treatment options in the future should DD reoccur. Why would you want to wait until you have lost the use of your hand before having surgery? The hand surgeon I consulted would not operate until I had severe contraction, that meant I would be in horrible pain for who knows how long, losing my ability to drive (I have a manual car), I was already having problems drying my hair, cutting vegetables, driving my car, using the computer, etc.. The future looked bleak if I had to wait for surgery. RT was a great option for me and I would choose it again and again if necessary.


Lori

10/21/10 02:50
LubaM. 
10/21/10 02:50
LubaM. 
Re: Women with Dupuytren's

Denise,

I agree with everything Lori said.

In my case I started in my early 50's with DD in my right pinkie. It progressed until I had (have) a severe contraction that is complicated with a boutonierre deformity, so both my PIP and DIP joints are involved. I waited too long, because 4 different surgeons advised to wait until the contracture was severe before doing surgery.

In my opinion, surgery should be a "last resort"...there are two good less invasive treatments: NA and RT... why not give them a try first? you can always do surgery in the end if they fail. I actuallly did RT (twice) on my right hand pinkie and even if its not been successful for me, at least I didn't go through the pains of surgery and long recovery. Many have reported success with NA.

On my left hand I had RT when I only had nodules without any contractures, and my DD is in remission for almost a year.

This is such a weird disease. The results are so different from one individual to another. In the end, you have to read alot, ask many questions and do whatever feels best for you.

10/22/10 01:26
flojo 
10/22/10 01:26
flojo 
Re: Women with Dupuytren's

Denise, There are treatments that are much less invasive than surgery, especially for early DD. Surgery does not stop progression of DD, however DD sometimes goes dormant with no treatment. This disease is totally unpredictable!

If you search in this Forum, some people found that surgery triggered more aggressive DD. With surgery, there will be scar tissue and the scar tissue can create contracture that is hard if not impossible to reverse.

Consider RT for early DD. That's the only thing going right now that stops the progression.

If you have contracture, NA or Xiaflex is an option to consider.

Read what others have written and come back and ask questions. People are very willing to share their experiences and why they chose the treatment they did. Finding out all you can from research and reading others' experiences will at least arm you with information that will help you know what to consider. Unfortunately, in the end only you can decide what is best for you.

10/22/10 07:26
loonsong 
10/22/10 07:26
loonsong 

Re: Women with Dupuytren's

I am 64 and my Dupuytren's showed the day after my very first Rolfing session. She worked heavy on my hands and I had wide bruising. The nodule was bright pink and the cord developed in a couple of days. This was in my R palm leading to my middle finger. Within a few days I found nodules at the base of both of my thumbs. Now 7 months later I can actually feel a pull in the middle finger, they say if the nodule is in the palm there is less chance of it contracting, but I can see it starting to happen.

How long do you wait for the NA procedure? That is what I want. I went to an otho and he said don't worry women hardly ever contract, but I am always the 2%. So I would like info about when I should get NA done, when to contact a Dr etc.

Any help would be appreciated. I also have had ledderhosen for about 4 years or so in both feet an advanced case there.

Thanks,

loonsong

Edited 10/22/10 07:29

10/23/10 16:14
lori 
10/23/10 16:14
lori 
Re: Women with Dupuytren's

I had a nodule in the palm and a cord started forming to the middle finger. I could feel it pulling and it then started to pucker and draw right at the base of the middle finger. I stopped the progression with radiation. I was not going to wait until my finger contracted before NA. I felt like the earlier I treated it the better chance I had for success, and also if RT did not "permanetly" work and the DD returned I could always go for more Rt and then NA as the next step. You might want to consider RT as the first step in your treatment instead of NA.

Lori

10/24/10 04:37
flojo 
10/24/10 04:37
flojo 
Re: Women with Dupuytren's

Quote:
I stopped the progression with radiation. I was not going to wait until my finger contracted before NA. I felt like the earlier I treated it the better chance I had for success, and also if RT did not "permanetly" work and the DD returned I could always go for more Rt and then NA as the next step. You might want to consider RT as the first step in your treatment instead of NA.
If I had known about RT sooner, I would have had RT first. My Dups was right at the stage of doing RT and NA. My hand was beginning to contract and NA released about 5 cords in my palm. Dr. T said that doing NA first to release the contracture was the thing to do. My hand was hard to hold flat for the RT even after NA, so he was probably right. I also think having RT first would have been alright. Glad now that I had both.

Everyone has to make the best decision based on the best info available, then just go for it.

10/24/10 06:47
loonsong 
10/24/10 06:47
loonsong 

Re: Women with Dupuytren's

One nodule is in my upper palm but the cord is going down, is this rare? Even so the middle finger is starting to pull. The other nodule on that hand is near the palm but the cord is leading to my thumb. On the other hand the nodule is at the base of my thumb I see or feel no cord in that lesser one.

The thought of radiation scares me, If I had cancer, I would not get it, or chemo. But that is different. I can't die from this it will certainly make my life more miserable though, so I have to do something to keep from being disabled, so I can keep driving etc.

loonsong

Edited 10/24/10 06:49

10/26/10 04:24
cindy850 
10/26/10 04:24
cindy850 
Re: Women with Dupuytren's

I don't think any hormones have anything to do with DD. But having RT is the best treatment out there the only treatment that can put this in remission. I would say go for it.

11/01/10 00:55
elsa 
11/01/10 00:55
elsa 
Re: Women with Dupuytren's

hi,
I just turned 23 and first noticed the bump in my hand three months ago. Am lucky to have a family friend who's an excellent orthopedic surgeon so asked him to take a look and he said it's dupuytren's (easier to write than to say..). my dad has it too but only the past few years. I'm swedish so i'm amused to see it being called viking disease. from what I read it's not too common for a woman my age, and I'm guessing it's a bad sign with such an early onset but I'll just have to wait and see.

Edited 11/01/10 00:55

11/01/10 05:05
flojo 
11/01/10 05:05
flojo 
Re: Women with Dupuytren's

Elsa,
Suggestion - research this site about treatment options, especially the less invasive treatments and read postings of various people about their experiences.
Maybe yours will not progress, but just in case, you will be informed.
Good luck!
Flora

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