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Looking for advice post Xiaflex
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11/30/2013 23:15
Emdoller 
11/30/2013 23:15
Emdoller 
Looking for advice post Xiaflex

I've read most of the posts and am looking for advice. I had a Xiaflex injection 9 months ago and it yielded positive results. Since then and over the last 2 months my PIP has contracted quite a bit. I'm guessing 50 degrees or so. I can't get my hand into my pocket.

I'm considering going back to my Dr (Dr Hentz at Stanford) and having surgery. I haven't seen him since the Xiaflex procedure.

I'm worried about the healing time, the risk of surgery, and if course the recurrence potential.

At this point my feeling is that it might as well try surgery in a "what else do I have to lose" mentality.

I'd appreciate advice!

Thanks in advance.

Ed

12/01/2013 01:01
callie 
12/01/2013 01:01
callie 
Re: Looking for advice post Xiaflex

I had surgery 12 years ago (little finger over 90 degrees contracture) and the finger is still as good as it was prior to Dupuytren's. I had very little pain with the entire procedure and recovery. I think surgery should be done before the condition is very serious. Most people wait too long to have the surgery and it gets blamed occasionally for adverse results. I would have surgery again (if needed on other hand), but I wouldn't wait until 90 degrees contracture.

12/01/2013 01:08
Emdoller 
12/01/2013 01:08
Emdoller 
Re: Looking for advice post Xiaflex

Thanks Callie.

One of the considerations is wether or not it makes a difference to do it now or wait and the impact of waiting. Right now I can live with it although I'd rather not.

Even with my 50 or so degrees, while not pleasant, I still do most things I want to do.

Any advice on Drs? Are you familiar with Dr Hentz? If I do decide on surgery I want to make sure I get the best there is.

Thanks again for your reply.

Ed

12/01/2013 02:07
callie 
12/01/2013 02:07
callie 
Re: Looking for advice post Xiaflex

What part of the country do you live? You are correct in your thoughts to have the best surgeon available.

You might consider "living with it" as long as possible (but not too long). I have friends who have Dupuytren's and it went dormant after about 40-50 degrees. My finger went from 0 degrees to over 90 in about 18 months.

Edited 12/01/13 04:10

12/01/2013 02:18
Emdoller 
12/01/2013 02:18
Emdoller 
Re: Looking for advice post Xiaflex

I live in Northern California. About 2 hrs north east of San Francisco. I amazed at how fast mine has gone from 0 to 50!! Crazy.

12/01/2013 10:15
wach 

Administrator

12/01/2013 10:15
wach 

Administrator

Re: Looking for advice post Xiaflex

How about

Dr. Keith Denkler (CHS)
275 Magnolia Avenue
Larkspur, CA (California) 94939
Phone: (415) 924-6010
http://www.plasticsurgerysf.com/dupuytrens/
Keith Denkler is an expert in treating Dupuytren's; experienced in surgery, NA, and collagenase.

More addresses are on http://www.dupuytren-online.info/NA_list_North_America.html

Wolfgang

Emdoller:
I live in Northern California. About 2 hrs north east of San Francisco. I amazed at how fast mine has gone from 0 to 50!! Crazy.


Edited 12/01/13 12:15

12/01/2013 13:07
Emdoller 
12/01/2013 13:07
Emdoller 
Re: Looking for advice post Xiaflex

Thanks Wolfgang. I have talked with Dr Denkler in the past and went to Dr Hentz at Stanford due to insurance coverage of the xiaflex treatment.

I'd love to hear from those who have used either for surgery.

Ed

12/01/2013 14:40
zinkadoodle 
12/01/2013 14:40
zinkadoodle 
Re: Looking for advice post Xiaflex

Hi Ed,

I'm going through the same issues as you. I participated in a Xiaflex multi cord study this past March, 8-1/2 months ago. After the Xiaflex, my PIP was reduced to about 10 degrees and my MCP to O. Since then, however, my PIP is back to 40 degrees and my MCP is 20 degrees. All of this after the doc told me she absolutely does not recommend NA because of the rapid recurrence of contracture after NA. What a joke.

Anyway, I am seeing a new surgeon on Wednesday, and I have the same questions. Like Callie, I had very successful surgery on my left hand about 12 years ago. To this day, it's still perfect. So, my inclination is to go ahead with the surgery now on my right hand. Yes, I can live with this the way it is..... until doing something that inadvertently forces my hand towards trying to go straight (leaning on a table or wall, for instance), which practically sends me to my knees in pain. I can live with this, until I try to fish my iPhone out of my pocket and struggle because my fingers just can't get into that pocket (yeah, i'm an idiot for putting my iPhone into my right pocket, but I am right handed). I can live with this, except washing my face is challenging when I can only use the tips of my fingers because my palm just won't go there. Yeah, I can live with this, except when I'm driving and that large nodule on my palm prevents me from holding the steering wheel comfortably, resulting in an aching and very tired hand very quickly. Yeah, I can live with this, BUT I HATE IT.

I know that surgery comes with no guarantees. I know that surgery will seriously compromise me for a couple of months because it will now be my on my dominant hand. But, I kind of feel like I have to try. I also think that the more contracted my hand and fingers become, the harder the fix to restore normality. And, I also know that Dupuytren's is such a miserably unpredictable disease, that there is always the risk that surgery could make matters worse. But again, I feel like I have to try.

This is the kind of discussion I will be having with the surgeon on Wednesday. I'm going to see what he has to say, and kind of take it from there. I look forward to the visit.

Wish us all the best of luck.

~~ Diane

12/01/2013 14:47
zinkadoodle 
12/01/2013 14:47
zinkadoodle 
Re: Looking for advice post Xiaflex

Also, the doc I'm seeing is in Smithtown, NY, is Dr. Steven Leo. I've never seen him before, but he takes my insurance. The doc who did the great surgery on my left hand no longer takes my insurance, so the cost will be rather prohibitive for me. The doc who did the Xiaflex doesn't want to do the surgery. And frankly, I'm not sure I would trust her to do it. Internet reviews (only two) give Dr. Leo great ratings, but I have no idea what procedure those two happy patients underwent. If anyone here knows him, I'm all ears.

~~ Diane

12/01/2013 17:48
Emdoller 
12/01/2013 17:48
Emdoller 
Re: Looking for advice post Xiaflex

Diane

Thanks for taking the time to respond. I plan on setting up a dr appointment tomorrow to discuss options. As you said, I too believe surgery is the only option outside of doing nothing. I measured my PIP contraction last night and it's at 50 degrees which means getting my iphone out of my pocket isn't easy.

Let me know how your appointment goes and I will do the same.

Good luck tomorrow!

Ed

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