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New here, but been there, done that.....
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01/14/2013 01:04
zinkadoodle 
01/14/2013 01:04
zinkadoodle 
New here, but been there, done that.....

Hi all. I'm new here to this forum. But, I am not new to DC. I had a palmar fasciotomy done about 10 years ago on my left hand. My ring finger was about 35% contracted, and severely painful because it was complicated with a tenosynovitis of middle and ring finger MCPs that prevented me from making a fist. One disease pulling and the other pushing. It was misery making. My surgeon wasn't sure surgery would help, but my rheumatologist talked him into giving it a go, as my hand was doing nothing but getting worse. The hand surgeon was wrong. He did a great job removing the cord and performing a double tendon release at the same time, and after many months of post op therapy, my hand is still fine today. No recurrence of any contractures at all. For that, I am happy.

But, now I have DC on my right hand. And, I'm right handed. It's my ring finger, both MCP and PIP, and my middle finger, just the MCP. I am seeing a doc at the Dupuytren's Center at Stony Brook, NY. She thinks that Xiaflex is my best option right now, but it would take three separate visits to treat the three separate cords. Given the cost, and the triple pain events, she said that I am a prime candidate for their multi cord clinical trials. There are a couple of slots left, and she gave me both the ups sides and the down sides. Upside is no cost to me, and it all gets done at once. Down side, of course, is increase in the pain of the treatment, given that they'll be treating the three cords at once. But, once it's done, it's done.

I look forward to the fact that it won't be open surgery. But, at the same time, it scares the bejesus outta me. I'm kind of a pain woos. I don't mind pain, per se, any more than anyone else, but the thought of consenting to have a painful procedure inflicted upon me I find really upsetting. In some ways, more so than surgery. So, I'm going to count on you all to kind of hold my hand a little bit. The injections aren't scheduled yet, but will likely be tomorrow.

So, that's my story. I've been reading this forum for about a week. And, to be honest, and like many others, I am sure, I will stick around for as long as I need you. Thanks!!

01/14/2013 02:47
hammer 
01/14/2013 02:47
hammer 
Re: New here, but been there, done that.....

Actually it wont be all done at once.It works like this.You will get 2 injections the first time,one in each cord.Then an 8 day follow up visit to measure and check on your health.Then a 15 day follow up and at 30 days then 60 days.After the 60 day visit they will discharge you from the study.After your discharged,then you can receive 3 more injections,1 injection every 30 days,so its really over a period of 150 days for all 5 injections.Its not a magic wand it is painful but worth it if your hands respond to it.I think that the double injection is about the right dose for one cord,its much more effective than the single injection.Just my thoughts on having had a multiple and singles.I have a multiple next monday morning,Ill get some pictures.Dave

01/14/2013 10:45
zinkadoodle 
01/14/2013 10:45
zinkadoodle 
Re: New here, but been there, done that.....

I do know about the 15, 30 and 60 day follow ups. It is, after all, a clinical trial. But, I am, or should I say, was fully expecting that those first set of injections would be all that I need, and the procedure would be done. In fact, if I have to get injected over and over again, then what's the point of the multi cord trial? I'll certainly be asking my doc a few more pointed questions when I talk to her today. Thanks!!

01/14/2013 12:19
hammer 
01/14/2013 12:19
hammer 
Re: New here, but been there, done that.....

They give you the option of having more injections;,you might have more cords or your multiple injection might not be 100% successful its not an exact science where they hit the perfect spot everytime.Did she talk to you about Skin Splits,Blood Blisters,Itching,and Swelling?If your pain Threshold is low you may want to look into NA.You wanted to know about Xiaflex.I have had other members message me and say to me,Dave that hurt so bad i couldnt even look at my hand why didnt you tell us about the pain.So Im makin sure you know what goes on.Dave

01/14/2013 13:29
zinkadoodle 
01/14/2013 13:29
zinkadoodle 
Re: New here, but been there, done that.....

Thanks, Dave. I appreciate your input and concern. I did talk to the doc about the pain, etc. She said, based on my skin, that this is a good likelihood that my skin will split. Then we'll do the wound care thing. She is also going to give me a script for heavy duty painkillers, because I did ask for them. However, she doesn't think I'll need them. Nice that she is letting me be the judge of that. :-) We talked about the Xiaflex route because she feels that going the NA route puts too much risk on nerve damage, wherein the Dupuytren's Center has never had a patient experience nerve damage with Xiaflex. This is my right hand, and nerve damage is not a risk I am willing to take.

About 10 years ago I had surgery on my left hand, which I talked about above. They also said there was a risk of nerve damage, but there were no other options at the time. At least, with an open surgery the doc can visualize the hand structures to avoid damaging stuff. My surgeon was excellent, and my hand is great today. But, surgery is a big deal. Months of rehab, suture removal was no fun, the little infection clean out wasn't exactly a joyful experience, either. It seems that no matter what you do, you're going to experience some discomfort. But, I have to say, given that my surgery went so well, I almost want to go that route. Almost...... :-p

Again, thanks. ~Diane

01/14/2013 15:07
callie 
01/14/2013 15:07
callie 
Re: New here, but been there, done that.....

Diane, I had surgery eleven years ago and my hand is still as good as before Dupuytren's. I had no problems as was golfing within three months. My finger was over 90 degrees contracted. The scar was from the base of the palm to the DIP (top) joint. I also had very little pain for the whole process. I would do surgery again before NA or Xiaflex, but that is a personal choice.

It is interesting that the person who just handled my RT (on other hand) had surgery 20 years ago and his finger was still perfect.

01/14/2013 23:50
hammer 
01/14/2013 23:50
hammer 
Re: New here, but been there, done that.....

Diane,Best of luck to you I hope all goes well.I go next Monday we can compare notes.I was givin some powerful painkillers as well.When in doubt,Medicate.lol.Dave

01/15/2013 02:30
zinkadoodle 
01/15/2013 02:30
zinkadoodle 
Re: New here, but been there, done that.....

hammer:
Diane,Best of luck to you I hope all goes well.I go next Monday we can compare notes.I was givin some powerful painkillers as well.When in doubt,Medicate.lol.Dave

Thanks, Dave. Best of luck to you, too. And, I agree. MEDICATE!! There is no reason to needlessly suffer when there are good chemicals to take the edge off.

It seems that I may not be able to get into the multi cord study because it's already full. This is a real bummer for me. Once I set my mind to something, glitches make me crazy. But, I'm at the top of the list if some drops out or is cut. And when all is said and done, and I don't get in, I'll deal with it just fine. Once way or another, this hand is getting fixed. It has to, as you all know. But, I may not know what and/or when till the end of the month. I can wait. ~Diane

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