March 27, 2010

Dupuytren's

A couple years ago I participated in clinical trials for an enzyme injection to treat Dupuytren's disease, a genetic condition that causes your fingers to contract. I posted videos on YouTube about the process (there are 8 videos, I've linked to the first one). I also posted an account of the process here on my blog ( if you put Dupuytren's in the search box here on my blog you can see all the relevant posts).
I get lots of mail about Dupuytren's and have more than 12,000 hits on the first video in the YouTube series, so even though you've likely never heard of it there are lots of people who have the condition.
I recently got an email from Nicholas Meyer, MD (left), a hand surgeon and orthopedic surgeon at St. Croix Orthopaedics in Minnesota. I asked him what he thought about the various treatments for Dupuytren's and here's what he had to say:

I learned the NA [Needle Aponeurotomy] technique from Dr. Eaton [Dr. Charles Eaton] in Jupiter, FL. He's the US "Guru" on NA and has great information on his website. The results are good, but not great (I've done about 6 cases; all look great initially and I am in the process of doing a follow-up survey with them at this time--I'll forward the results when I get them). There is a faster recurrence rate (anywhere from 15-60% requiring another procedure within 3 years) than with open surgery (10-30%), but probably about the same as with the enzyme (I don't think there's enough data yet to directly compare the two). Open surgery definitely has a role, especially if your nodules are large and bothersome, as this allows the surgeon to remove that tissue. Bottom line with Dupuytren's: Since it's a genetic condition, we can never completely cure it. It will always come back in some form or another.
I just received data regarding the injection: They are charging $3200 for
a single dose. They are charging essentially as much as they can while still costing less than what open surgery would cost. However, if you add anesthetic, and fees for the surgeon/doctor doing the injection, I would imagine the price to the patient will be at least $4000. NA costs about $1000 from what I
understand.
Hope that helps.

My note: Here's a great link with more information about Dr. Charles Eaton in Jupiter, Florida.

7 comments:

Nick said...
This comment has been removed by the author.
Nick said...

Samantha has done a great job providing personal information on this topic, which gives patients/people a "real-life" perspective of this condition and its treatment. As with just about any medical condition, if you are afflicted with Dupuytren's Disease, it is best to weigh all of the risks and benefits of open surgery, needle aponeurotomy, and enzyme injection. Each has a different cost, time for recovery, amount of therapy involved, rate of recurrence, and risk related to the procedure. Be sure to consider all of these options when making an informed decision. Thanks again to Samantha for the great information.

Scarletgrey said...

Does insurance cover any of these procedures, or are they too new? Samantha is my sister, and I have it now, but on both hands. The nodules have gotten bigger since the last time you saw them. Actually on my left hand now it looks like another nodule is growing. Right now it doesn't hurt, but it is starting to bother me when I am using the machines at the gym with my trainer. I am using fitness gloves now which does help. I can post a picture Sam if you want me to. Sounds like there really isn't a whole lot of help with this disease.

Nick said...

Insurance should cover open surgery and needle aponeurotomy; the injection is so new that I'm sure insurance rates are still being figured out (I would recommend that you have a pre-approval with insurance before the injection). NA is slowly gaining popularity and more doctors are trained in the technique.

Scarletgrey said...

I will do that if the Dupytren's gets really bad. I have only had it for I think less than 3 years. I am going to be on Humana-medicare as of April 1. The nodules bother me a little when I put pressure on my hands while using the equipment at the gym, not enough to totally bother me. Lately though, they have been itching, not all the time, just sometimes. It's very strange. I would definitely get preapproval before having any kind of procedure on them. I have other things I would like to take care of anyway. :)

Gwen said...

Getting the "shot" tomorrow morning out here in Geneva, Illinois. Hoping for the best.
Thanks so much for sharing your story. Even with the pain part, its better to know.
My insurance is covering the shot with a $180.00 copay!
Stay tuned
Dee

Samantha Hoffman said...

Gwen,
Please let me know how it goes. I'm sure you'll get anesthetic when they "break" the cord. Please let me know. I'd love to add your story to my blog.
S.