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Women with Dupuytren's
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04/09/11 17:02
LubaM. 
04/09/11 17:02
LubaM. 
Re: Women with Dupuytren's

Pinetrees:
LubaM.:
Pinetrees:

Same with me..onset of menopause. I was diagnosed 6 years ago. No contractures, just nodules and pulling, rt. hand. LD on both feet also. Only risk factor....Northern European decent.
If you have no contractures, just nodules and pulling...you are a perfect candidate for radiation therapy. Its very effective for early stages of Dupuytrens and LD. I had radiation in Nov. 09 for left hand nodules and LD on left foot. It stopped the progression of the disease in the radiated areas... Read all you can on this forum and consider treating early before contractures occur.

Thanks! In the early days of my diagnosis, I was so driven to GET THIS FIXED...went to all the specialists, only to be told..to early for intervention! This site, along with the Dupuytrens Foundation website has been so helpful! Thanks again for sharing your experience. Btw...which Dr. did you see for radiation treatment?
I had my radiation treatment at Scripps Hospital in LaJolla,CA. with Dr. Tripuraneni. He is listed on the left side of this page under Radiotherapy Clinics.

04/22/11 22:00
lpgrace 
04/22/11 22:00
lpgrace 
Re: Women with Dupuytren's

I'm a 46 year old woman and fist noticed a small nodule in my palm when I was just 30! I knew right away what it was, however, because my grandfather had it (had multiple surgeries on both hands over the years) and my mother had it. My mother's started when she was in her early 50's as did my aunt's. They both had surgeries - I was horrified by the scarring and long recovery. My 44 year old brother just this year had surgery for a rapidly progressing form that only started perhaps 5 years ago. You could say my family has the super-gene!

When I first discovered my own and started researching treatments, I stumbled upon both the NA available in Europe (wasn't aware of anyone doing it in the US yet then) and the early clinical trials for collagenase. I tried to get into the trials myself but none were available in my area but did continue to track the progress for 15 years. Now that it is finally approved, I'm leery of it - i.e. long term effects, impacts to healthy tissues, etc. In the last few months, I was pretty much resigned to go for surgery as it has been progressing rapidly and significantly impacting my active lifestyle.

I recently consulted a hand surgeon who said I am a candidate for NA. She also said that because of how young I was when it showed up, it's an aggressive presentation of DD. She also cautioned me that surgery would not guarantee that the frequent pain I experience (and have experienced since day one with this DD - like knife-stabbing pain at times) would stop, and in fact, some patients who had no pain before end up with chronic pain afterward! So, now I'm leaning towards trying NA to buy some time before the inevitable surgery down the road. She said she would not do RT on my left hand (which is just starting to have some thickening in the palm starting) because if cancer risk. I'm also wondering whether to fly to Germany for the RT for my left hand as I can find no information about anyone doing it in Washington state. And I'm fairly certain my health insurance wouldn't cover it anyway.

As for vitamin D, I've been taking 2000-5000 iu/day for 5 or 6 years now on my naturpath's recommendation -not for DD. I don't think it has helped the DD at all.

04/22/11 23:08
spanishbuddha 

Administrator

04/22/11 23:08
spanishbuddha 

Administrator

Re: Women with Dupuytren's

lpgrace, did you see the list of US clinics doing RT?
http://www.dupuytren-online.info/radiotherapy_clinics.html

Of course the Professor in Germany has the most experience, but there are reports on this forum of good experience with RT in the US.

04/23/11 01:05
LubaM. 
04/23/11 01:05
LubaM. 
Re: Women with Dupuytren's

spanishbuddha:
lpgrace, did you see the list of US clinics doing RT?
http://www.dupuytren-online.info/radiotherapy_clinics.html

Of course the Professor in Germany has the most experience, but there are reports on this forum of good experience with RT in the US.
lpgrace...
Happy to hear that you found a surgeon who recommended NA. I've had DD and LD for the last ten years. I consulted with four different surgeons, and they ALL recommended only surgery, some of them saying that it was the "only" treatment for DD. This kind of advice contributed to my ending up with a badly contracted PIP joint in my small finger of the right hand in spite of two NA's on that finger and the contracture is back to what it was before NA. I wish I had known about NA and Radiation years ago instead of waiting.

In Nov. 2009, I had successful Radiation therapy (RT) with Dr. Tripuraneni at Scripps Hospital in LaJolla, CA. Two large hard nodules on my foot and multiple nodules and dimples in my left hand. Its been almost 18 months since the radiation, and the progression of the disease has stopped, so far, in the radiated areas. The best time for radiation therapy is when the disease is active, but no contractures.

Check the information on this site about available clinics for NA and RT and make sure you know beforehand what your insurance coverage is...there's been problems with coverage.

05/07/11 21:43
SimoneB 
05/07/11 21:43
SimoneB 
Re: Women with Dupuytren's

Hey!
I am a 48 year old woman and I recently (4 months ago) noticed a nodule in my right hand, right below my index finger. I am not even entirely sure it is Dupuytren to be honest, but my dad has it and has been operated on it multiple times so the chances are quite high that it's the same. I am a photographer and well, that is the one finger I cannot do without so I am worried sick that I will not be able to work anymore. The nodule seems to grow fairly quickly in the last couple of months but I have no idea how to get it diagnosed properly. I did go to the doctor but he just mumbled something fairly ridiculous and basically told me it was nothing to worry about. Untill I started researching on the internet!
I live in the Netherlands, so was wondering if there is maybe someone here who can point me in the right direction for getting a proper diagnosis first?
I've already found a ton of information here, as I couldn't find much on the Dutch websites...

05/07/11 23:16
spanishbuddha 

Administrator

05/07/11 23:16
spanishbuddha 

Administrator

Re: Women with Dupuytren's

You should seek out a hand specialist clinic, either a doctor at the clinic or an experienced therapist. They will help with the diagnosis. But, then, if it is Dupuytrens, as you may have read here, they may not be aware of or recommend the latest treatments.

An attempt to explain what a Dupuytren's nodule is like in the hand, but still take the above advice. It is a lump in the fascia of the skin so part of the deep skin. This means you can move it by pinching the skin. Anything deeper, such as a joint bursitis or ganglion will not move when you pinch and pull it with the skin.

Take heart, even though you have active symptoms of something, many cases of Dupuytren's settle down and do not progress. But then if it is and it does progress there are good treatment options.

05/08/11 07:01
wach 

Administrator

05/08/11 07:01
wach 

Administrator

Re: Women with Dupuytren's

Prof. Paul Werker, Groningen, is on the Advisory Board of Dupuytren Society. He is an expert on Dupuytren's. His contact details are on http://www.dupuytren-online.info/NA_list..._countries.html. Prof. Hein ter Linden in Zwolle would be an alternative. By the way, a Belgium forum in Flemish is http://www.12forum.nl/forum/?ID=1531.

Wolfgang
Wolfgang

SimoneB:
Hey!
... I live in the Netherlands, so was wondering if there is maybe someone here who can point me in the right direction for getting a proper diagnosis first?
I've already found a ton of information here, as I couldn't find much on the Dutch websites...

05/09/11 08:43
SimoneB 
05/09/11 08:43
SimoneB 
Re: Women with Dupuytren's

Thanks for your replies! I will definitely try and locate a handclinic or try and get a consult with one of the doctors mentioned. I've been compairing hands with my dad yesterday and I'm starting to think it could be a ganglion rather then Dupuytren but I guess it will take a specialist to make a diagnosis. Thanks again for your help!

12/02/11 05:13
gjp 
12/02/11 05:13
gjp 
Re: Women with Dupuytren's

I noticed my fist nodules at age 55. No family history. I had broken my wrist and had a plate put in about 2 months before the first symptoms. I just had surgery on my hand. Wish I researched a bit more. Radiation might have been a better choice. Will definitely try it any any new bumps!

12/02/11 05:21
flojo 
12/02/11 05:21
flojo 
Re: Women with Dupuytren's

Sorry to hear that you are a member of our club that nobody really wants to qualify for membership. Gotta find humor in this.

Sounds like you have been researching this site. There is definitely a wealth of information here.

You will find support from people on this Forum, too. Keep checking in and ask questions.

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