Congratulations on your progress. I am happy for you and a bit envious.

Brian

My recent experience was similar to zinkadoodle's. It was actually the 2nd Xiaflex treatment to my left ring finger, the first one being in July 2011. Back then I went from 90 degrees down to 10 degrees on the PIP joint. Within a year, I was back up to 70 degrees. But I wasn't very good about wearing my splint after about a month after that first Xiaflex injection, so I blame myself, not the failure of Xiaflex.

After debating whether or not to have traditional surgery to correct the problem this 2nd time, I decided to give Xiaflex one more try, and that I'd do my best to wear the splint as long as it takes to keep my finger straight.

The injection was on 4/4 and the straightening on 4/5. The pain of the Xiaflex (3 sticks) was similar to last time, but I noticed that night much less pain and more itchiness than in 2011. I was thrilled I was able to sleep pain free that night.

The day of the straightening, 4/5, was different than last time in the my Dr. injected a nerve block into my left palm. Within 10 minutes there was no pain sensation in my left ring finger, and very limited feeling in the rest of the hand. This made the straightening almost completely pain free, which was a miracle. He got my finger to 0 degrees, another miracle.

Then I went upstairs for my first physical therapy appt. post straightening. The PT made a splint for my left ring finger and pinkie. By then, the nerve block was wearing off, and the pain kicked in. I took a first pain killer. The PT put extra padding on the splint because I told her the main reason I hated wearing the spint in 2011 was that it killed. This time, the padding really helped, especially during those first few days post straightening. I only ended up taking painkillers every 4 hours for about 24 hours--and I did sleep very well that night post straightening. Very different than in 2011.

I've had my follow up appt. with both the Dr. and PT, everything is going very well. After 2 weeks straight of wearing the spint round the clock, except for showers, I'm now only wearing it at night, and on long drives in the car. My finger starts out completely straight in the morning, when I take the splint off. There might be a 5 degree bend by the time I go to bed and put the splint back on. I'm going to keep wearing the splint at night for as long as possible.

There's very little pain and minor swelling in my left ring finger now, I hope that all subsides soon.

Thanks for telling us your story jaci.

Presumably you now have a contracture affecting the hand?

I think NA is a good option for you at this stage, as long as your treating doctor has plenty of experience performing NA.

Some people experience recurrence quite soon after NA and then consider RT as an option to slow it down. But perhaps you are relatively young for RT, so repeated NA can be done if the DD is not too aggressive.

Please do keep us informed of your progress, and if you don't mind we love before and after photo's.

There are fellow Aussies on the forum and they might join in.

Jaci; I live in Sydney but grew up in NZ. Your story sounds very similar to mine except that I am 24 years older and male. In my case it took 15-20 year before I had a proper diagnosis but even then I was told that this was a genetic disease that only affected men. Alternatively the disease was triggered by alcoholism which, I'm sure we will all agree, is unlikely at 16.

All that tells us is the the medical system is unreliable so far as this condition is concerned.

My view is that you should delay all the serious intervention as long as possible. Xiaflex might turn out to be a miracle cure but I'm not ready to try dealing with a non life threatening disease by pumping drugs into my body and I am 58. You have time to see what the long term side effects are. Yes with NA the symptoms do seem to return but so what, just do it again.

Hi Jaci,

More than most diseases, I believe DD requires the patient to be proactive and do his or her own research. Sounds like this is even more true in your country than mine. When I talked last to the Xiaflex rep from Seattle he said they are rapidly expanding to the Pacific Rim given the number of DD cases. I was surprised to learn Japan has a high incidence of the disease.

When I was diagnosed in 1994 the best medical advice was to do nothing. I do not think that is the best advice today. I would, if I had it to do over which I don't, be aggressive in treatment but very informed about options. I would have started with Xiaflex early and before other treatments because every treatment option creates scar tissue, inhibiting the success of the drug. Please note I have had both NA and Xiaflex treatments, with Xiaflex being a bit more helpful but neither curbing the disease enough to avoid further surgeries. If I had done this three years ago and prior to palmar fasciectomies (PF) the result could have been different. We will never know but I let a surgeon talk me out of Xiaflex in 2010 and regret it mightily.

On July 2nd I go to a new hand and plastic surgeon to discuss Dr. Lynn Ketchum's combination of PF and skin grafts that is mentioned in this thread. There is a video of his 15 minute presentation to a seminar in 2010. My only other option is amputation of the ring and little finger of my right hand which are completely contracted. The little finger of the left hand was amputated and the ring finger is starting to contract.

I saw little difference in terms of pain between NA and Xiaflex treatments as both involve needles. I would recommend using a local anesthesia with either, some doctors don't and I think they don't appreciate the pain involved. With Xiaflex we were able to pop one cord but NA didn't work at all. Again we are all different but I would have started Xiaflex much earlier before scar tissue developed.

You might consider contacting the people at www.xiaflex.com directly to determine availability. I would also have volunteered for clinical trials which they are constantly running even now. Good luck!