First off, I would like to thank everyone that participates on this forum. It was a wealth of information and support as I tried to get my brain around this disease and process what steps to take and how best to proceed.

In an effort to “give back” to the community that helped me, I’d like to write my own personal experience and my goal is to create an article that I wish I had read when I was going through this initially.

My name is David and I’m 45 years old. I am a database programmer by trade, and quite busy in my hobby life. I am an avid juggler of over 30 years, a pretty good bowler, somewhat slightly better than horrible golfer and pool player. Overall, a rather healthy non smoker and non drinker.

On the 20th of Jan 2014, I was in my bowling league, made some sort of shot and hit my hands together. My right pinky hit my wedding ring pretty hard and I remember it stinging a bit. The next week I noticed a little bit of swelling in that area, but didn’t think much of it.

Over the span of several months, the swelling didn’t go down and the finger was bent all the time. It also was starting to bother me more. I went in for my general checkup and had the doctor take a look at it. I also had an odd bump that seemed like a callus (but didn’t act like one) on my left index finger. Figured he could check that out at the same time.

Because of the swelling and the bend, he had me get an x-ray and then meet with a hand specialist. My feelings at the time were that it had probably been broken and must have healed wrong or something.

The specialist (Dr. Robert Dodds @ The Corvallis Clinic in Oregon) took just a quick look at it and informed me that it was Dupuytren’s Contracture (which to me sounded like it should be some sort of Big Bang Theory Episode) and that surgery could fix that up. However . . . he was retiring and doesn’t do the surgery anymore so he would refer me to a different specialist.

So, my feelings were after that meeting, that I had some sort of disease I’ve never heard of and apparently I needed surgery to fix it.

Boy am I so happy now that he was retiring and that surgery wasn’t the first and since I didn’t know any better, perhaps only option.

This also started me on my information quest. After all I’m a firm believer that it is my own responsibility to make sure I get the best care and get as much information as I can. I’ll say that the initial information about the disease was pretty grim.

There is no cure.
If nothing is done, it’s just going to keep getting worse.
It’s usually an “older” person’s disease, so the younger you are, the more likely you’re to have an aggressive version.

Because of this, I now have a lot of paranoia with my hands. Is that spot on my finger new? Is that a node? Is that going to get worse?

My new appointment with Peter Tsai @ Upper Hand Orthopedics Corvallis Oregon was set for the 8th of January, 2015.

My goal was to gather as much info as I could and sort through all the options to try and find something that would work for me.

As I saw it, there were three main treatments.

1. Needle Aponeurotomy (NA)
2. Xiaflex Injection
3. Surgery

The more options that I could put in front of surgery the better I would feel.

The meeting came, and it was tremendously better than my previous meeting with Dodds.

I spoke with a support guy there and he mentioned that one of the things they like to do is to wait for the Dupuytren’s to stabilize before they do treatments. That sort of bummed me out as how am I supposed to know when it stabilizes?

Peter came in and checked out my hand. Said it really wasn’t too bad and he felt I would be an excellent candidate for Xiaflex. I asked about the NA treatment and he said that he would not recommend it as the cords were really close to a nerve and that it would be more difficult to try and do that procedure. Also the Xiaflex has been yielding really great results. There isn’t much that needs to be done about my index finger at the moment as it’s not causing a contraction. I do not have any palm nodes.

I mentioned that the other individual said that I needed to wait until it stabilized before treatment. He looked at him and said, “What??!? No.” The fact was, the earlier the better.

Peter was supportive, friendly and very informative.

He seemed to think that it would take just one injection and it would make a huge improvement.

The cost though, is rather expensive, so he brought in someone to help work through the paperwork. There is a financial support program with the chemical company, where they will help pay for a large portion of the cost. My insurance is pretty good, so my total cost wasn’t going to go over the deductible for the year ($250) and this first visit was already going to cut into that amount anyway.
So, the injection date was scheduled for Feb 19th. That gave me about a month to get things organized and prepped for the process.

--- End of Part One --- :-)

Overall, the weekend went fairly well. I checked my finger on the protractor chart and found it very interesting that my resting bend was now 27 degrees. I had no idea what it would be after the manipulation, but at least it was heading in the correct direction!

Peter had mentioned that there might be some tearing of the bands over the weekend and to not be too worried about that if it happened. There was only one incident that I believe I felt actual tearing. I was washing my hair and my pinky moved laterally away from the ring finger. I had a brief, yet intense moment of pain, the bright light flashing kind, and figured that had to be a tear. At that point, I didn’t really want to feel that again, so I was a bit easier on my hand for the rest of the weekend.

Other than the first night, I didn’t take any more meds. Things were sore, but it wasn’t too bad.

Monday came pretty fast and I arrived at my appointment.

I’ll tell you, I had a lot of apprehension about the “manipulation”.

First off, I didn’t want to hear the noise of the tearing, so I brought my iPod.
Second, I really didn’t want to have more pain of injection and such.

Peter took a quick look at the hand and said, “I can make it straighter”.

So, they brought me into a different room, and a young lady did the injection of the numbing agent. I mentioned to her that I could feel the injections last time, so she said she would inject a little extra and make sure I was good an numb. This time, she sprayed a super cold spray over the area of the injection first. That stuff is great!!! It made the injection a piece of cake. She did give me extra and by the time Peter came in, the hand felt rather dead, but in a really good way.

I let him know that I did not want to hear it, so I brought my iPod. He laughed a bit and said, “Crank it!”

I did and decided that I didn’t need to see what was going on either . . . heh heh.

I got about 30 – 45 seconds into the song I was listening to (Maps by Maroon 5 if you must know) when he waved at me and let me know he was done.

Finger was straighter and my task was to just gently straighten it every once in a while as it heals to help it heal nice and straight.

I had no skin splitting, so no wound issues there. I did not need a split.

I have a follow-up appointment about a month from the manipulation (April 2nd)

When the numbing wore off, the hand really ached. There was extensive bruising and it was rather swollen.

I was interested in checking the bend on the protractor paper. Post manipulation, the resting bend is now at 18 degrees. With manual flexing, I can get it down to single digits (with a lot of pain, I could reach 0 degrees) and I think it will get better as the swelling goes down. Expectations are that it’s going to be swollen for probably close to a month.

It is sore, but it’s actually a “good” sore. By that I mean that it’s sore, but it’s getting better, rather than it’s sore and I know it’s going to get worse.

Because this is something that I’m sure I’ll need again in the future, I wanted to see what I could do to find ways of making things better for next time.

Here’s what I came up with.

First off, I would totally do it again as it’s nice that the results are quick and noticeable.
Second, phase one (injections) was the more difficult of the two, so that needed to be improved. I would improve it by asking for the cold spray for the numbing injection and also to make sure they inject just a bit extra so the fingers are quite numb.
Third, I’m not going to check out what he’s doing when he’s doing the injections.
Fourth, knowing what the lymph node swelling is like, I have a better idea as far as positions for sleeping and what activities to avoid.
Fifth, I’d probably be a little easier with the hand and try to avoid the tearing over the weekend. I can certainly see why he would give the enzyme extra days to work. I think the intensity of the manipulation experience would have been much different if it was done after 24 hours.

Phase 2 was great and I wouldn’t do anything different. I still don’t want to hear the pop, so I’ll listen to some sort of pop music instead.

Swelling and bruising has already started to get better after the first week, and I expect it to continue to get better.

Honestly, even at 18 degrees with the swelling, I feel so much better than I have in over a year. Anything more than that and it’s icing on the cake.

Hopefully people find this lengthy novel useful. I will update it after my follow up appointment in April, but I’ll check back before then in case there are further questions or other information that I can provide that might help out.

Thanks for reading and thank you again forum members. You assisted this forum lurker quite a bit and it’s about time you all got the credit you deserved!

David Sallee

Hi David

Thanks for sharing your experience.

I wonder why RT is not included in your list of possible treatments? Was it because you already had a contracture? RT seems to be increasingly used in the US and with the success of straightening after Xiaflex this is still a possibility for you.

Best wishes
SB

Sherise:

---

Sounds like you acquired all the knowledge on the different procedures for DC.

You found good qualified doctors in Oregon. I am located in the same state.

Also you were prepared fro the XIAFLEX injections by doing your homework.

I had the same painful side effects hand bruised a swollen severely. Elbow still swollen and arm pit where nodules are still slightly sore. My injection was Feb. 23. I have been cautious as the doctors warnings were not to disturb the finger, lift anything. Due to maintaining the XIAFLEX in the areas , 5-6 were injected. My pinky has not changed.. However the scarring from surgery can no longer be seen as the scaring had caused the flare in the pinky to be folded to the palm after surgery for DC & the 3 other fingers now had flared. I never expected all my fingers to flare after surgery.

I go I to the doctors for manipulation Monday March 3. I will definitely ask for the freeze spray, a Valium and bring my IPod.
I had a Callimachus for AP the pulling and tearing was better for me if I was slightly sedated. So I asked for a vallium for XIAFLEX. Really helped me thru both procedures.

Good Luck to you and thanks for the info.

Sorry to hear that your experience didn't go well :-(

Today was my follow up with my Dr. about a month after the injections.

At the start, things were progressing nicely.

Finger was much straighter, and I figured when the swelling was finished, that it would be if not straight, probably in the single digits range.

Sadly, that doesn't seem to be the case.

As of late, the flex has been pretty much all over the place. Better in the mornings and gets worse in the evenings. Manually I was able to straighten it, but it never stays straight. Recently, it has been getting a bit worse, and so I was interested in having the appointment and getting some info as to what was going on.

In a nutshell, I appear to be "special" and the Xiaflex didn't work for me. It's back and it's progressing at the moment.

It might stop progressing, or it might continue, no real way of knowing.

The Dr. did not recommend doing another injection in my little finger.

He said that the next option for me would be surgery. I'm very reluctant to do that (he's not all that excited about it either) and it would be something that I'd hold off and wait until things were really bad. My main concern is that it's something that would probably trigger more issues, and it's something that can only be done once. Plus all the recovery time that would be involved.

All of which means that I'm in the "live with it" zone at the moment.

Wish I had better / happier news to report.

David Sallee