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Looking for a bright spot.....
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tiger77 

tiger77 
Looking for a bright spot.....

Well I'm 34 y.o. I have Dupuytren's in my right little finger with knuckle pads and Ledderhose in both feet. I guess I am considered diathesis. I had my first surgery when I was 27 when I had class 3. I receive cortisone injections in my feet to readily reduce the nodules in my arch as well as big toe. Well it's been 7 years and my little finger is back to class 2, steadily moving to class 3. I'm scheduling appts. with Dr.'s to see what should be the next step. Dr. Eaton in Fl. already stated with my age and involvement that NA is definitely out. He suggested a dermofasciectomy and skin graft. No one has ever suggested radiation, and that xiaflex stuff is something new to me. I'm seriously considering just amputating the little finger, but afraid that it will start developing rapidly on adjacent fingers. I'm really at a loss and just trying to figure out what's my next best option.

Tusk 

Tusk 
Re: Looking for a bright spot.....

how many years ago did you see Dr. Eaton?
7 years is nice delay, with surgery and skin graft you might stop the recurrence in that area
you won't get a radiation recommendation, pretty much self-referral or go to Germany

tiger77 

tiger77 
Re: Looking for a bright spot.....

I've never visited Dr. Eaton, I filled out an online referral and that was his response. He said it wouldn't be worth driving from Louisiana over to that part of Florida being there were board certified surgeons here that he recommened.

Tusk 

Tusk 
Re: Looking for a bright spot.....

sounds like you have two options, find the best CHS in your area and have open hand surgery
or, go the RT route first, Baton Rouge was mentioned here recently, you might give that radiation oncologist a call and set up a visit or see if they can refer you to someone in your local area
some here go to Germany as I'm sure you've read, that is always the best option if it works for you

for those with diathesis version of Dups (includes me) the options and outcomes are not as good
NA and Xiaflex don't seem to work well (fast recurrence)

tiger77 

tiger77 
Re: Looking for a bright spot.....

would radiation help to correct my finger from the contracture though. that's what i'm really having issues with now.

btw, thanks so much tusk for all the info you've provided.

Edited 11/09/11 02:54

Tusk 

Tusk 
Re: Looking for a bright spot.....

no, not with the current contracture of your pinky you mentioned
radiation helps with nodules, especially when they are small, it is said to possibly shrink/reduce them and slow or stop the disease progression which means the formation of cords which result in the finger contracture
so it is not a substitute for getting that finger straightened, the longer you wait the less likely it will ever get fully straight
others can tell you more about the RT

you have nothing to lose by trying it imo

txmike 

txmike 
Re: Looking for a bright spot.....

Tiger, I just returned from my first series of RT in Hamburg. After much research I decided that was the best procedure for me. I have nodules & cords, but no contracture. It is true that RT will not help the contracture, but it is very succcesful in slowing/stopping the disease. I would highly suggest that you email Prof. Seegenschmiedt in Hamburg and tell him your story. I can not say enough good things about him and his staff!

Best of luck to you!
Michael

tiger77 

tiger77 
Re: Looking for a bright spot.....

Mike, thanks so much for that info. Just curious though, which institution is he affiliated with? From what I've been reading, I'll still need to have some sort of surgery to correct the contracture, but I will definitely get in contact with him before to gain his opinion.

Edited 11/10/11 02:59

txmike 

txmike 
Re: Looking for a bright spot.....

Yes, the RT will not correct your contracture, that will require surgery or NA.

Strahlenzentrum Hamburg
Langenhorner Chaussee 369
22419 Hamburg
Tel.: +49(0)40 / 2442458-42
Fax: +49(0)40 / 2442458-44
Prof. Heinrich Seegenschmiedt and Dr. Fabian Fehlauer
Email: mhs@szhh.info

richardt 

richardt 
Re: Looking for a bright spot.....

I have the Diathesis, started younger than you. My hands are by far the worst. At this moment. I'm typing with a heavlily bandaged hand form my 10th surgery, a faciectomy with graft. Faciotomy and faciectomy do not work for long, only a faciectomy with graft stops the condition. I've had 10 surgeries because I did not insist on a graft on each finger the first time out, so 4 of the surgeries were for reoccurance at a knuckle (PIP) that had been previously released. Some doctors are reluctant to do grafts... if yours is, find a more experienced surgeon. Insist as well on grafts that are large enough to block the end around growth of the cords and nodules of the remnant facia remaining.

I've tried xiaflex, and will not try it again. It was moderatly effective in releasing a webbing contracture, but the lumps and bands still grow, and I will soon be planning my 11th surgery, a graft, to finish the job that in the thumb in which I received xiaflex.

Health insurance... Hope you have it, or move to a state or country with it

Career... hope you're not heavlily dependent upon your hands to make your living. If so begin training for a second career.

Bright spot.... It can be stopped, you can have use of all ten fingers , and grafting is a well-practiced safe procedure.
Another bright spot, with a palmar graft from arm to palm, you can have hair on your palm..... great conversation piece.

good luck

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