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New to forum, questions of course
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06/23/2018 17:46
DonkeyOatey 
06/23/2018 17:46
DonkeyOatey 
New to forum, questions of course

Glad to have found you all!

Bio data:
65 YO white male,
Dallas, Texas, USA
Dentist
Non-smoker, non-drinker, non- recreational drug user
Only medications taken are antihistamines, nasal steroids, and recently, meloxicam (to see if that would help a developing nodule on thumb)

Hx of my Dupuytrens:
First noticed "bump" on right palm 4 years ago - no limitation of ROM
During physical my physician suggested collagenase injection, (he'd just heard about it, no experience)
I refereed myself to a physical therapist primarily out of convenience, followed instructions for a year, no change.
Within the last month a noticeable decrease in dorsal flexion of small and ring finger has developed, concomitantly with..
A nodule on right thumb interphalangeal joint developing.

I hope I did not leave anything important out. Since stopping my daily therapy exercises I would periodically compare dorsal flexion between both hands and never was able to notice a difference. Quite suddenly I find that I have lost about 15 degrees. Then this immoble nodule the size of a BB pops up, and it's becoming uncomfortable. These occurrences spurred me to action
whereupon I discovered that they were related.

My problem is that i use my right hand extensively at work and in several hobbies. Surgery is out of the question and collagenase injection appear to have protracted down times as well. NA might be a possibility if the early stage of my disease coincides with decreased healing time, but since I can live quite well with it as is I merely need to arrest it's development. However, at this time I am most interested in the possibility of radiation.

Years of dealing with various disease processes on family members has taught me that whatever the 'specialty' of the doctor you visit, he will invariably recommend his specialty. I'm hesitant to just run into the nearest hand surgeon and accept his treatment plan. Also, I find that existing patients are almost always a font of information and the difference in perspective can be illuminating.

With all that said, am I barking up the wrong tree? Does anyone know where to begin with seeking a person skilled, and experienced, in treating Dupuytrens? Since multiple visits are required I would prefer someone in the Dallas/Ft Worth metropolitan area naturally.

Thank you for any help you can give me, I'm sure I'll have more questions shortly.

06/24/2018 06:24
spanishbuddha 

Administrator

06/24/2018 06:24
spanishbuddha 

Administrator

Re: New to forum, questions of course

Hi Donkey and welcome to the forum. We describe the main treatment options on our website. RT for early active progressive stages, NA or Xiaflex for moderate contracture and surgery for severe cases. You talk about limited flexion but it is not clear if you have a cord causing a contracture. A photo might help. If you do NA has a very short down time, Xiaflex longer, possibly a few weeks.

If your hand is flat and the symptoms of progression are current or recent then RT would be an option. We list NA doctors, including in Tx on the website https://www.dupuytren-online.info/NA_list_North_America.html and I would start here, since they will give further advice on the stage you are at and may recommend the next step, including if you find a doctor who knows about RT, having RT. We also list some Radiologists here https://www.dupuytren-online.info/radiotherapy_clinics.html although many US people contact at their nearest oncology clinic and ask there.

There are other less clear, or less evidence based options, including specific form of massage, gentle use of various types of oil, and you can try them if so inclined but stay away from the snake oil cures touted around the Internet.
Best wishes SB

07/04/2018 11:08
rockinroller 
07/04/2018 11:08
rockinroller 
Re: New to forum, questions of course

This disease is degenerative and once it presents itself--usually initially as a callous-like subdermal "lump" on the palm of one or both hands--the rates of degeneration are far and wide, and based substantially on genetic propensities as well as lifestyles and habits of the patient. In my own circumstance I inherited the disease from my father. I vaguely remember how curled his fingers were when he shook my hand, etc. He was in his 70s at the time. I recollect that he underwent two surgeries in an effort to correct the issue and I know that he complained after a few months--maybe a year--that the contracture had returned to some degree. I also remember the tremendous scarring of his hands. My condition presented as a callous like lump in 2014, at 64, and exacerbated to the level of 90% contracture of my RH little finger (and partially the finger adjoining) over the subsequent 3.5 years. In April of this year--after consults with no less than 6 ortho surgeons--I submitted to a Xiaflex treatment and procedure with a local doctor who was listed on the Xiaflex site as having several administrations of the drug. I had one vial of the chemical injected in several places at the base of both fingers in the palm area, then 2 days later I returned for the "manipulation" session, in which the doctor literally breaks the subdermal cords that were pulling the fingers inward. I will not waste too much space here describing that ordeal and other residual aspects of a Xiaflex treatment, as that's a "whole other story". Be that as it may, my ring finger is 95% corrected and the little finger is standing up to some degree on its own. However there's still a fair amount of collagen cording in the little finger that keeps it from smoothly contracting and opening erect. At the time of my initial treatment, the doctor had ordered 2 vials of Xiaflex, injecting only one in the first session, intentionally reserving the other for specific injections into the little finger at a future date. I am scheduled for that in early August. I was fitted with a removable splint to wear at night (it negatively impacted my sleep to the extent that I actually wear it when I can during the day--at least a cumulative 6-8 hours--instead). It is supposed to "encourage" the little and ring fingers to be erect, however I personally don't think it's doing much. I began a homeopathic treatment prior to the Xiaflex by applying a coat of Vitamin E oil followed by a top coat of DMSO (you can Google those two items online) to the cords and collagen accumulations on my hand, and continue to apply that regimen on the little finger and base of the finger, although I've seen no effect from using that tandem for 4 months now.

My perspective on this is that if the Xiaflex process provides even a year of "de-contracture", I will submit to it again and again, despite the pain and cost (Medicare covers 80% of the chemical's cost, which is around $4000 per vial, street price). I am a professional musician (keyboardist/pianist) and the value of having fingers that can open and close intentionally is unquestionable. This disease appears to be increasingly coming into its own, fortunately, as sufferers are "coming out of the closet", reporting their conditions on websites like this, and offering various insights into treatment options that have worked, and others that have not. I personally believe the surgery option is relatively archaic and should be considered only as a last resort, at best. I also believe there's a drug out there somewhere, waiting to be discovered, that will present itself as the best treatment option for Dupuytrens sufferers. Xiaflex is a step toward that but definitely not a panacea.

08/04/2018 19:29
bigm100d 
08/04/2018 19:29
bigm100d 
Re: New to forum, questions of course

Thanks for the Xiaflex mention. I posted my update on another thread, it was good for me also. I play guitar, but right handed, so strumming & picking hand, not on fret board. But I could even play guitar left handed now, if I knew how.

https://www.dupuytren-online.info/Forum_...&thread=201

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