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My Xiaflex Experience (Long Write Up)
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02/28/15 00:34
DSallee 
02/28/15 00:34
DSallee 
My Xiaflex Experience (Long Write Up)

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 --- :-)

02/28/15 00:36
DSallee 
02/28/15 00:36
DSallee 
Re: My Xiaflex Experience (Long Write Up)

In order to keep track of my finger bend, I downloaded a protractor and kept track of two stats. The first was the “resting bend” where my finger was in a natural position and I’d mark on the line. My resting bend was 46 degrees on Jan 15th. I also kept track of the “best straight” bend. Where I would manually try and straighten my hand using about as much force as I could tolerate. That turned out to be 27 degrees, so I had a flex range of 19 degrees.

Here's a link to the protractor that I use:

Printable Protractor
http://www.ossmann.com/protractor/conven...-protractor.pdf


The time between the appointment and the injection also gave me a chance to think about all the reasons why I wanted to get it done.

I hated always bumping my knuckle when doing simple tasks because it stuck out so much.

The outside edge of my pinky was sore and at times it would hurt doing some of my juggling tricks, or even something as simple as shaking hands during pool league.

I was pulling a plastic handled trash bag out of a can. It got a bit stuck so I had to pull harder. The handle strap managed to find just the right spot on my hand and it was quite painful.

Each of those times I would feel stupid that something like that happened and was frustrated more than anything else.

So, while I wasn’t looking forward to going through the process, I was looking forward to the results.

Day of the injection process arrived and here’s how that went (Thursday Feb 19th).

Peter came in and did the numbing injection (appointment was at 2:40pm). “You’ll feel a pinch and bit of a burn.”

Quite correct about that. It wasn’t super painful, but not all that pleasant. Because the numbing stuff has to be injected slowly, it can feel like it’s taking quite some time. It also instantly causes swelling.

Sat there getting numb for a while, about 15 or so minutes.

Peter comes back in, and my fingers (pinky and ring) were rather numb.

He processed the enzyme and loaded it up. While it is technically one injection, he did several mini injections on the finger.

The first was at the base and I didn’t feel it at all. However, the more he injected and moved up the finger, the more I could feel it. The injections also weren’t simple push in, inject, pull out, either. They were more, push in, inject, wiggle the needle around some, inject a bit more . . . kind of thing. When that started happening, I opted not to watch the rest. There were about 5 or so mini injections. By the last one, which was the furthest up the finger, it was very painful.

When he was done, he put a bandage on and wrapped up my hand. Meanwhile, I got very pale and sweaty . . . heh heh. He asked if I was ok, and I said I just needed to sit there for a bit and recover. He got me some water and that helped a lot.

I probably sat there for another 10 or 15 minutes and after that point, felt much better. Entire appointment was under an hour. They said that for the manipulation part they would put me in a different room, one where I could lay down if I needed to.

I picked up some celebration ice cream and then drove back to work. The bandage didn’t affect my work all that much (computer stuff) and I was instructed to leave the bandage on until that evening.

I took the bandage off and noticed the hand was swollen, and could see the puncture marks, but also, my finger was quite a bit straighter.

Hand was sore though and so I took some PM pain meds so I could get a good night sleep.

He had let me know that a side effect of the Xiaflex is that you will feel swelling in lymph nodes, especially the elbow area and possibly arm pit area. I can say Yes to that. The elbow area was quite sore as well. Hurt a lot if I held my arm close to my body. Stretching my arm straight was also rather sore. Had to find just the right position for sleeping where I wasn’t worried about my hand and kept my arm bent and off my body.

The swelling eventually started to get to my arm pit, but was slight compared to the elbow area. That swelling lasted I’d say, 3 days.

I know that the typical “manipulation” portion of the process happens 24 hours later. Not so for Peter Tsai. He prefers to let the enzyme work for longer than that as it’s easier on everyone involved. So the manipulation was going to happen Monday Feb 23.

--- End of Part 2 --- :-)

02/28/15 00:38
DSallee 
02/28/15 00:38
DSallee 
Re: My Xiaflex Experience (Long Write Up)

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

02/28/15 06:48
Sherise 
02/28/15 06:48
Sherise 
Re: My Xiaflex Experience (Long Write Up)

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.

02/28/15 09:58
spanishbuddha 

Administrator

02/28/15 09:58
spanishbuddha 

Administrator

Re: My Xiaflex Experience (Long Write Up)

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

03/02/15 17:10
DSallee 
03/02/15 17:10
DSallee 
Re: My Xiaflex Experience (Long Write Up)

spanishbuddha:
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

SB,

Honestly, RT has not been mentioned by any of the doctors (or me for that matter) at this point. I think the primary focus has been on the little finger which was already contracted.

That said, when I have my follow up in April, I will be mentioning it and see what his thoughts are about it for either future locations when they pop up or the node on my left index finger.

Thanks for the suggestion!

David Sallee

03/02/15 17:13
DSallee 
03/02/15 17:13
DSallee 
Re: My Xiaflex Experience (Long Write Up)

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.

Sherise,

I know you have your manipulation tomorrow, and I wish you the best of luck!

It has been one week since mine and things seem to be progressing nicely. The bruising is going away and the swelling is getting better too.

Have a speedy recovery and let us know when you can.

David Sallee

03/29/15 06:03
Sherise 
03/29/15 06:03
Sherise 
Re: My Xiaflex Experience (Long Write Up)

The manipulation was very painful. The numbing injection did not block all the pain. I screamed stop . I had brought my iPod to listen to music hoping not to feel any pain & to make it thru .

The dr did manage to almost straighten my finger. It was to painful for any further manipulation as the knuckles were severely damaged from DC position at 130' for 3 years. The good news all the scarring was gone which helped a lot. The XIAFLEX enzyme does break up the collagen tissue. The dr. said that XIAFLEX is in another clinical study to help severe scarring on burn victims and other scarred tissue.

The pinky is still swollen and very touchy. At least I can get a pair of gloves on, and my pinky doesn't get stuck on drawer handles. I wear a splint daily, exercise the fingers. The finger always wants to curl without the splint. I must wear the splint for a year at night. Though the finger has gotten better it is always painful as well as my palm now.

The palm nodules are very sore since XIAFLEX . I cannot drive or grip anything . The nodules in my palm have doubled in size since the injection .

I asked the dr. About low level radiation and he said not enough studies or time passed to reliably consider it to be safe. After raidiation on hand it could damage the bones years later. The dr also a plastic hand surgeon and was involved in the XIAFLEX clinical studies in Portland did not recommend radiation or infrared treatments.

NA didn't work on my hand ....still waiting to see the results on my pinky. Since surgery 3 years ago all my fingers have flared from the surgery. The dr did not even warn me nor did the origional,surgeon offer any further treatments. I have had to do research online.

It seems like every time I find something to help DC it just make this disease worse. My right hand is painful. I am very discouraged at this point.

Hope you are doing better... How are you doing? Hope to hear from you soon? Have you tried radiation?
Sherice

04/03/15 00:28
DSallee 
04/03/15 00:28
DSallee 
Re: My Xiaflex Experience (Long Write Up)

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

04/03/15 08:45
wach 

Administrator

04/03/15 08:45
wach 

Administrator

Re: My Xiaflex Experience (Long Write Up)

Hi David,

I am very sorry to hear that the contracture is coming back so soon! Two questions:

- are you wearing a night splint? if not, you might consider it. It helped me to maintain my Xiaflex results in my PIP joint of the little finger. Your joint may have gotten used to the contracture and might tend to fall back in its original contracture position. Splinting might be beneficial. Unfortunately it helped me only as long as I wore the splint. When I stopped using it, the contracture came back. The "good" news is that it did not get worse than before the treatment.

- did your cord snap? This is something your doctor should know and you probaly would have heard it too. I suspect that there are cases wher Xiaflex softens the cord and when manipulated the cord only gets extended but doesn't break. If it doesn't break the contracture might return faster.

Wolfgang

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