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06/13/2011 13:59
Christl 
06/13/2011 13:59
Christl 

New to this

Hello all,
Have been reading for a couple of days some of the threads. Well, I am new with this lederhosen/DC thing. I can't even think straight right now and just don't know what to do. Seems I had a nodule in my right hand for at least 2 years. Did not know it was something until a friend told me that she has seen this on some of her golfing buddies. Now my hand starts to contract, no big deal so far. My left hand is starting to get those nodules and I can also feel nodules on my feet. I am somewhat at a loss at this point. I think my feet have only pea size nodules, maybe the beginning. I cycle and walk a lot so I hope it's something from that. Have not seen a doctor yet by the way, but from what I have researched so far, I have the disease. Don't even know what doctor to look for to get a prognosis on the feet. The hands for sure. I live in the SF Bay Area. Can anyone recommend somebody? Any help would be appreciated.

Thanks,

Christl

06/13/2011 14:58
wach 

Administrator

06/13/2011 14:58
wach 

Administrator

Re: New to this

Hi Christl, welcome to our forum! I am sure you have a lot of questions and members of our forum are often knowledgable and responsive. So this is the right place!

No need to panic, Dupuytren's might become inconvenient at some point of time but it is not a really bad disease. If you have to have a chronic disease, Dupuytren's definitely belongs to the better ones ... but seriously: it's managable and it is usually not progressing very rapidly so you have time to learn what's available and finally do the right thing.

The first thing is to see an experienced doctor who can diagnose what you have. Not every nodule in the hand is Dupuytren's, even if what you describe pretty much sounds like it. An experienced doctor in your area would e.g. be Keith Denkler
Dr. Keith Denkler (CHS)
275 Magnolia Avenue
Larkspur, CA (California) 94939
Phone: (415) 924-6010
http://www.plasticsurgerysf.com/dupuytrens/

Good luck and keep asking questions!

Wolfgang

06/13/2011 17:07
INW 
06/13/2011 17:07
INW 
Re: New to this

Christl:
Hello all,
Have been reading for a couple of days some of the threads. Well, I am new with this lederhosen/DC thing. I can't even think straight right now and just don't know what to do. Seems I had a nodule in my right hand for at least 2 years. Did not know it was something until a friend told me that she has seen this on some of her golfing buddies. Now my hand starts to contract, no big deal so far. My left hand is starting to get those nodules and I can also feel nodules on my feet. I am somewhat at a loss at this point. I think my feet have only pea size nodules, maybe the beginning. I cycle and walk a lot so I hope it's something from that. Have not seen a doctor yet by the way, but from what I have researched so far, I have the disease. Don't even know what doctor to look for to get a prognosis on the feet. The hands for sure. I live in the SF Bay Area. Can anyone recommend somebody? Any help would be appreciated.

Thanks,

Christl

I had Dupuytren hand surgery four months ago. The Dupuytren’s removed went from the mid plum of the hand half way up my ring finger and a small nodule at the base of the middle finger. My hand and fingers were swollen for three months and finger joints still painful. I can close my hand about 80% and improving slowly with dedicated home therapy daily. I also purchased a mini hand vibrator from www.beabletodo.com item number NC70209 which I use every day to manage the scar tissue and an inch long nodules (not removed) which has been reduced by 75%. Two month after the surgery I noticed nodules growing on the arch of both feet. My left foot has one the size of a pellet just behind the ball of my foot and the right has one the size of a jelly bean but half the diameter about three inches behind the ball. I read Dupuytren’s surgery can spark this disease to grow elsewhere. On this web-site under treatments than other therapies/ Mechanical treatment / massaging
one of the report states
“Two patients independently reported that intense massaging of their cords and nodules with a ball (wooden or plastic) over months eventually seemed to remove the Dupuytren tissue. In one case this observation was confirmed by a doctor. We don't know how that worked and whether it would work for other patients. This is far from being a therapy but we consider it worth mentioning”.
So what I have been doing every day after using the mini hand vibrator on my hand, I use it on the nodules on my feet. My mother also has Dupuytren’s nodules on her hand which recently turned into a cord growing up her ring finger. I purchased another mini hand vibrator for her to use. She has been using it for about two weeks. I am keeping track of progress (none yet, takes months).
The jelly bean size nodule on my right foot before the use of the vibrator was painful, two months later there is no pain and the nodule is half the size, the pellet size left foot is maybe 10% reduce in size. The mini hand vibrator is $19.95 and worth a try before considering surgery. For a lubricant I am using liquid vitamin E oil and also taking a 400 IU of E two times a day. I am having my mother use Udderly smooth udder cream which can be purchased just about any store to see if the vitamin E makes any difference.

Jerry

06/14/2011 13:53
Christl 
06/14/2011 13:53
Christl 

Re: New to this

Thank you Wolfgang and Jerry for putting my mind at ease a bit. It is scary though when you are new, because I just don't know what's in store for me. Seems this disease is so different from person to person. Will start with some and go crazy, other will have it and don't even know they have it. In my right hand it was dorment for 2+ years, took a spill with my bike about 10 month ago, could be that that triggert the progress, I guess who knows.


Will be sticking around for awhile.

Christl

06/14/2011 16:28
flojo 
06/14/2011 16:28
flojo 
Re: New to this

Hi Christi,

My personal experience with Dr. Denkler has been great. He is a hand surgeon who prefers to do other early treatment options rather than surgery if it is possible. He did NA on my hand a little over 2 years ago. I have an appointment to have NA again in mid-July. He does the enzyme/Xiaflex and I will be talking about that for one area of my palm and little finger.

His whole office staff are so very helpful. I live in So. Calif and my son lives in the East Bay area. Since I have to have this disease, I feel so fortunate to have Dr. Denkler available to treat my DD! I call him the "best in the West".

Sounds like you are right on top of things with your disease. That's what I did and continue to do. You do have some options. If you have any specific questions, you can send a message through the "Private Messages" tap at the top of this page.

Flora

06/16/2011 22:20
Christl 
06/16/2011 22:20
Christl 

Re: New to this

Thanks Flora, Will see Dr. Denkler next week.

06/19/2011 14:49
Christl 
06/19/2011 14:49
Christl 

Re: New to this

Boy oh boy, I have this disease in both my hand and have nodules in both my feet. All still new to me, but get info from this site and some very nice, compassionate people here on this forum. My podiatrist, as I expected, did not know to much about this disease. He told me he saw very few people in his praxis with this, he seems to be 60+, so this is very rare indeed. From what I gaher, RT in the early stage is the way to go. This realy sucks. My husband and I used to cycle, seems since I fell of my bike and landed on my wrist about 10 month ago, all this was activated. Since I have DC in both hand, should I still cycle? From Di I know cycling with LD is ok, according to her doctor. Have been cycling still, but wonder if I should stop. DC in both hands is very active right now. Already have cord in right hand and left has two nodules, no cord yet. Guess now is the time to act. I feel time is running out. I guess once one has nodules on cord, this hand is not suitable for RT treatment.
Thanks for listening, I feel very alone right now.

06/19/2011 16:28
INW 
06/19/2011 16:28
INW 
Re: New to this

Christl:
Boy oh boy, I have this disease in both my hand and have nodules in both my feet. All still new to me, but get info from this site and some very nice, compassionate people here on this forum. My podiatrist, as I expected, did not know to much about this disease. He told me he saw very few people in his praxis with this, he seems to be 60+, so this is very rare indeed. From what I gaher, RT in the early stage is the way to go. This realy sucks. My husband and I used to cycle, seems since I fell of my bike and landed on my wrist about 10 month ago, all this was activated. Since I have DC in both hand, should I still cycle? From Di I know cycling with LD is ok, according to her doctor. Have been cycling still, but wonder if I should stop. DC in both hands is very active right now. Already have cord in right hand and left has two nodules, no cord yet. Guess now is the time to act. I feel time is running out. I guess once one has nodules on cord, this hand is not suitable for RT treatment.
Thanks for listening, I feel very alone right now.

Christl
My advice is not to jump into this too quickly. You have plenty of time to read all the pros and cons with every procedure out there. The Dupuytren's society site has a lot of good info concerning treatments/side effects etc for you to make a good choice. Educate yourself along with your husband as much as possible and then decide your treatment. Not every doctor is licensed to perform all the treatments but can give you good statistics of the procedures they do. Each procedure reacts different to our own make-up. You are not alone, those of use that have this disease are with you and you are in our thoughts.
Take care and enjoy life

06/19/2011 18:08
spanishbuddha 

Administrator

06/19/2011 18:08
spanishbuddha 

Administrator

Re: New to this

Christl:
Guess now is the time to act. I feel time is running out. I guess once one has nodules on cord, this hand is not suitable for RT treatment.
Thanks for listening, I feel very alone right now.
Christl see http://www.dupuytren-online.info/dupuytr..._therapies.htmlfor different stages treatment options.

06/19/2011 19:27
Christl 
06/19/2011 19:27
Christl 

Re: New to this

Thank you INW and spanishbuddha, I am just a bit in shock right now. I read the article. Seems I have some time and don't have to rush things and freak out, that's what I am doing now.
This site is realy great.

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