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Brand new to this...a few questions please
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04/10/2014 18:23
jaquson 
04/10/2014 18:23
jaquson 
Brand new to this...a few questions please

I was just officially diagnosed with this yesterday although have had nodules and cords in my hands for awhile now. My small finger is contracting at this point and I decided to make a plan with a MD. Unfortunately the doctor I saw is really lacking in social skills and basically said I will need surgery when I feel like it is time. She tells me that she doesn't treat nodules or cords and because of knuckle involvement surgery is the best option. So, I am wondering, in all of your experience and research what you may know about preventing further contractures - it seems to me there must be more to treatment that just waiting for me to decide my finger is curled up enough to bother me. Both of my hands are involved and this has progress fairly quickly in my opinion. I am a 47 year old female who dreads the idea of surgery! :) Thanks for any thoughts or info you may have!

04/10/2014 18:34
DaveTS 
04/10/2014 18:34
DaveTS 
Re: Brand new to this...a few questions please

Hi. PM if you want more details. As you will learn on the site, there are many treatment options for this disease. At the early nodule stage you can have radiation treatments done. Once you have cords and a little bit of contracture (10-30°) you can have needle aponeurotomy or collagenase treatments. Surgery would be indicated for people with greater contractures.
Problem with surgeons is they see every problem as a nail and the only tool as a hammer.
Simply not true. Stay positive. And best of luck.

04/10/2014 18:37
DaveTS 
04/10/2014 18:37
DaveTS 
Re: Brand new to this...a few questions please

Oh, and by the way, my personal experiences been most medical doctors are enormous tools. But your mileage may vary. My radiation oncologist in Minnesota Dr. Dusenbery was an exception to the rule. She was very respectful and very helpful. If you just have nodules in the other hand or on your feet, I highly recommend going to see her and her team.

04/10/2014 18:39
spanishbuddha 

Administrator

04/10/2014 18:39
spanishbuddha 

Administrator

Re: Brand new to this...a few questions please

Welcome jaquson

Yes there are other options for treatment. Explore this website for the main ones: Radiotherapy in early stages of an active cycle, needle aponeurotomy, Xiaflex, and various types and degree of surgery.

It sounds like you are in the USA? You are possibly a candidate at your stage for NA or Xiaflex, see the list of some doctors listed on the treatment pages. Or come back and say where you are, and others may chip in.

There is no cure, so most treatments buy you some time and contracture maybe recur. But often a lot of time, many years, with straight functional hands and some occasional minor treatment in between.

There are some risk factors associated with the condition. See if any apply to you, and try and remove them.

Best wishes

SB

04/10/2014 22:38
sherrin 
04/10/2014 22:38
sherrin 
Re: Brand new to this...a few questions please

Get a second opinion with another hand surgron. You will likely be seeing your chosen Dr. for years, and treatment. It is best that you see someone you like and trust. It is very unnerving to see somebody for treatment that you don't feel is exploring all the options, and that you do not have a good rapport with.

04/10/2014 23:54
littlepeaks 
04/10/2014 23:54
littlepeaks 
Re: Brand new to this...a few questions please

One other option -- if you're into this sort of thing -- you can check for any clinical studies you might like to participate in. Check out http://www.centerwatch.com/ -- You can search by your medical condition and/or location.

Good luck.

04/11/2014 11:15
jaquson 
04/11/2014 11:15
jaquson 
Re: Brand new to this...a few questions please

Thanks so much for your replies! I have always found these types of forums so helpful when dealing with an issue... I am in the USA (NY state) and will definitely be seeking another opinion! I want to hopefully be more proactive in a treatment plan rather than wait for the things to "get bad" and then have surgery. Best wishes to all of you and I am sure I'll be posting again!

04/12/2014 00:13
twinstead 
04/12/2014 00:13
twinstead 
Re: Brand new to this...a few questions please

Winstead, OTR
This is also my first time on this site, actually my first time to post on any site. I am an occupational therapist and have treated many patients with DC over the past 18 years. Unfortunately, all these patients have been referred to me after either having surgery or in an effort to avoid or prolong having surgery. Even the non-surgical patients have always had moderate to severe contractures by the time I first saw them. Last year I had the opportunity to treat my first patient who obviously had very early stages of Dupuytren's disease without contracture. This 70 year old female did have significant bands and nodules and actually came to me first because of past professional history. I told her that she had what appeared to be early DC, but in compliance with state law, referred her to a local MD for diagnosis. When she was sent back to me for treatment to prevent the oncoming contractures, I realized that there is basically no research based evidence for preventive treatment. I developed a protocol including ultrasound, myofascial release, manual stretch, and electrical stimulation in an attempt to delay or avoid the inevitable future of contractures and to help my patient achieve her goal of maintaining function without surgery. I am please to report that after 8 months of one visit per week, she has had no loss of movement or function. We have encountered several instances of very tender nodules and new bands developing, however, all have responded to treatment. Due to lack or research with conservative management, or published findings with this option, I was actually looking to see if anyone else may have had similar experiences or if it could be that this patient simply has not progressed as rapidly as others with this disease. I would appreciate any feedback or information regarding common time frames from first noticed symptoms to first contracture. Hope some of this information is helpful to you.

04/12/2014 05:00
wach 

Administrator

04/12/2014 05:00
wach 

Administrator

Re: Brand new to this...a few questions please

Hi twinstead,

welcome to our forum and congratulation for your first post! Your experience is very helpful and massaging seems to have helped patients to release tension and sometimes even reduce the size of nodules, both for Dupuytren as well as for Ledderhose disease. To find according posts you can search this forum with the "Search Forum" option on the left menu.

An example would be the thread
http://www.dupuytren-online.info/Forum_E...apy-2_18_1.html
specifically the recent posts from stephenjeffrey might interest you.

You might also have a look at the paragraph on massaging on
http://www.dupuytren-online.info/dupuytr...s_research.html

Please keep reporting your results of treating early stages!

Wolfgang

04/12/2014 06:43
spanishbuddha 

Administrator

04/12/2014 06:43
spanishbuddha 

Administrator

Re: Brand new to this...a few questions please

Welcome twin stead

Check out posts by stephenjeffrey and visit his website http://www.ealingmassagetherapy.co.uk/Du...-s-Massage.html. He is offering similar massage protocol to you with some reported success.

SB

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