Hi my name is Sherice and I am located in Portland Oregon. I have had nodules on my hand and fingers for many years.

My pinky finger was slightly curved yet nothing serious.

My GP sent me to a hand surgeon at OHSU, after surgery the pinky curled to a fist position and frozen while the other four fingers were now curling and disfigured. When they were normal before surgery. I was shocked when the surgeon said that the surgery caused a flare with my other fingers. He stated that he did all he could do and never referred me to anyone else or more therapy.

After three years I read about AP tried needling did not help and then onto XIAFLEX . It was miserable my hand swelled like a balloon and bruised to my wrist. My elbow was swollen and the lymph nodes under my arm was so painful I could not move for almost two weeks. I read about the bio drug XIAFLEX and was well aware of the side effects. It did clear all the scarring from surgery 3 years ago and my pinky was straightened considerably,well enough to put on a pair of gloves.

My surgeon was a hand plastic surgeon this time familiar with DC. He also participated in the clinical trials with XIAFLEX & was experienced with AP treatments with DC.

The damage to the bones from frozen in place for 3 years took its toll when it was time to straighten the finger. It was very painful even with a pain block.

XIAFLEX also caused the nodules in my fingers and palm to double in size leaving my right hand in considerable pain. I cannot drive or grip anything since the nodules have swollen in size since the XIAFLEX injection. The doctor gave me cortisone injections in the palm nodules helped for a few days.

I asked the dr about low radiation therapy. He discouraged me by saying not enough evidence to show bone damage from radiation treatment years from now. I also asked him about infrared therapy he never heard of it for DC.

I have to wait another 6 weeks to see the doc who is taking over the original doctor who performed the XIAFLEX injection and NA plastic surgeons doctors practice since he has recently retired.

I am trying to stay positive but it seems like every time something is tried it makes my DC worse .

Anyone had better success with DC treatments? What have you tried and how has it helped?

The good thing about XIAFLEX is that the enzymes did break away scar tissue from the surgery 3 years ago. I was amazed no sign of scar tissue at all. XIAFLEX is now in a study to help remove scar tissue from many applications ie. surgery burn victims etc.

I feel like so many things have had to be put on hold. I want my life back. Is it possible with DC?

See pic after surgery. 3 years ago effected all my fingers & are all frozen. XIAFLEX only opened pinky .

Edited 03/29/15 07:15

Does anyone the name of an excellent N.A. hand specialist in Florida , New York, or other northeastern states..

Dr. Eaton worked miracles for me on two separate occasions ...many years ago ..

Now I have another finger acting up ... my index finger ..appears to be developing a nodule ..no contracture ..yet..

Wonder if a steroid injection is worth considering...as sometimes an injection can stir thing up ..and get DUPS going ..

Thanks to all ..

wach:

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Hi Sherise,

the symptoms after Xiaflex that you are describing will probably go away within a couple of weeks. For the time being it is inconvenient and may feel even worse than before but it will get better. Just give it a little time and enjoy your strechted pinkie!

BTW, I had my first radiotherapy more than 30 years ago and bones are still OK. Your doctor might be overly cautious with regard to radiotherapy, which is often the case with surgeons. To my opinion the best doctors for Dupuytren's are those who suffer from it themselves. They are usually much more open to other treatment options.

"I feel like so many things have had to be put on hold. I want my life back. Is it possible with DC?"
A: Yes, definitely! I got my first nodule with the age of 35 and today, after 30 years of DC, I am still doing OK. Probably the best message is that Dupuytren's might become inconvenient but it's no reason at all to not enjoy life. Don't let this stupid disease spoil your life!


Wolfgang

Unfortunately Charlie Eaton is not practising anymore but you might have a look at http://www.dupuytren-online.info/NA_list_North_America.html for alternatives-

Wolfgang

missbetsy:

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Dr. Gary Pess has quite a following on the Dupuytren's FB page. Appears to come highly recommended, very knowledgeable, seems to know his stuff regarding Dupuytrens and has two offices in NJ.
http://centraljerseyhand.com/gary-pess-md.htm