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Sooo Glad to Hear there is pain and I am not crazy.
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06/11/2014 16:06
semmett 
06/11/2014 16:06
semmett 
Sooo Glad to Hear there is pain and I am not crazy.

My first nodules appeared about a year ago. As they began to cord the pain began and increased as the cord sized increased. It is a small cords across the palm and one from ring finger to wrist. I was diagnosed a month ago when I went to a hand surgery. I was told Dupuytren's didn't cause pain. She did injections for trigger finger. I went back two days ago and again told her about the pain. She said all the literature said it was painless. I told that I didn't know why the literature says that ...because mine hurts. It is at the point that I can not grip the steering wheel of the car with my right hand when I drive.

Enough said...she is doing the surgery next week. I am glad we are doing it before the cords have my fingers drawn down. I think the healing process might go a little smoother. She said I would not need PT and the healing process was 6 weeks. I would appreciate your comment. I wonder how we can get this "literature" changed.

06/11/2014 18:12
spanishbuddha 

Administrator

06/11/2014 18:12
spanishbuddha 

Administrator

Re: Sooo Glad to Hear there is pain and I am not crazy.

semmett:
My first nodules appeared about a year ago. As they began to cord the pain began and increased as the cord sized increased. It is a small cords across the palm and one from ring finger to wrist. I was diagnosed a month ago when I went to a hand surgery. I was told Dupuytren's didn't cause pain. She did injections for trigger finger. I went back two days ago and again told her about the pain. She said all the literature said it was painless. I told that I didn't know why the literature says that ...because mine hurts. It is at the point that I can not grip the steering wheel of the car with my right hand when I drive.

Enough said...she is doing the surgery next week. I am glad we are doing it before the cords have my fingers drawn down. I think the healing process might go a little smoother. She said I would not need PT and the healing process was 6 weeks. I would appreciate your comment. I wonder how we can get this "literature" changed.
Welcome to the forum semmett

What is the surgery for? Surgery to remove cords and nodules where there is no contracture is very unusual. I think your hope that the healing process might go a little smoother is baseless. People on here report their DD has been instigated by hand surgery! Do some more research on the pro's and cons of hand surgery before proceeding. Lots of stories, good and bad on this forum. Maybe RT is appropriate for you and will have the same result (of helping pain relief.)?

Best wishes

SB

06/11/2014 23:18
callie 
06/11/2014 23:18
callie 
Re: Sooo Glad to Hear there is pain and I am not crazy.

Is the surgery for something other than Dupuytren's? The pain could very easily be from another condition. Surgery at this stage for Dupuytren's would be unusual.

06/12/2014 16:01
newman 
06/12/2014 16:01
newman 

Re: Sooo Glad to Hear there is pain and I am not crazy.

Hi, firstly you may be moving too quickly for the surgery option. How old are you.? On average one would not identify pain with Dupuytrens. But what is pain? Each individual's threshold is different. I have had many surgeries and never needed to take anything for the pain. I am a strong believer, in my case each and every surgery started the clock ticking towards the next surgery and also reduced the time span. Certainly treat the pain but get another opinion re the surgery. PNF or NA would be a better option once the contraction has reached 20 or 30 degrees.

06/12/2014 17:34
econn 
06/12/2014 17:34
econn 
Re: Sooo Glad to Hear there is pain and I am not crazy.

My DC is not painful but limits the use of my hands. I was referred to a plastic surgeon who is skilled in NA, open fasciectomy and Xiaflex injections. His recommendation, in my situation (DC in left hand, nodules beginning in right) is to go with the Xiaflex for the L hand and wait and see on the right. His experience is that Xiaflex will be effective for 7-10 years and can be repeated if/as needed. I am still able to pretty much use my left hand but my right hand bothers me because the nodules make it difficult to mow the lawn or grip things.

06/12/2014 18:30
semmett 
06/12/2014 18:30
semmett 
Re: Sooo Glad to Hear there is pain and I am not crazy.

If you read some of the comments from other users you will realized that a lot of people have pain with DD. To answer some of the questions, I am 62 years old. I have had plenty of surgeries including a triple by-pass heart sugery. The worst of all... being on a ventilator. Hey.. I know about pain.

I already had the open palm injections which made the pain worse. I do no know what you are talking about when you say PNF, RT, NA or Xiaflex.

As previous stated I have cords across my palm and one from my ring finger to my wrist. These are the cords the doctor will be removing. She indicated she will be making 3 or 4 tiny incisions. My pain does not come and go ... it is there night and day. If I move my hand during the night...it has woke me up and can keep me from fallings asleep.

Right now I am really confused. I don't know what to do?

06/12/2014 18:46
spanishbuddha 

Administrator

06/12/2014 18:46
spanishbuddha 

Administrator

Re: Sooo Glad to Hear there is pain and I am not crazy.

semmett:
If you read some of the comments from other users you will realized that a lot of people have pain with DD. To answer some of the questions, I am 62 years old. I have had plenty of surgeries including a triple by-pass heart sugery. The worst of all... being on a ventilator. Hey.. I know about pain.

I already had the open palm injections which made the pain worse. I do no know what you are talking about when you say PNF, RT, NA or Xiaflex.

As previous stated I have cords across my palm and one from my ring finger to my wrist. These are the cords the doctor will be removing. She indicated she will be making 3 or 4 tiny incisions. My pain does not come and go ... it is there night and day. If I move my hand during the night...it has woke me up and can keep me from fallings asleep.

Right now I am really confused. I don't know what to do?
Yes, plenty of people get pain with DD. On this forum it is well acknowledged.

NA is the same as PNF, described on this website under treatments tab.

RT is radiotherapy, described on this website under treatments tab.

Xiaflex is the collagenase injections, described on this website under treatments tab.

If you don't know that you had Xiaflex injections, maybe they were steroid shots?

My advice, and I am not a doctor, is delay by a few weeks until you understand better the risks of hand surgery with Dupuytren's, investigate whether RT is available and appropriate for you, and get a better understanding of what the surgery is for - removing cords and nodules without a contracture is unusual and there is no guarantee this will solve your pain if that is not causing it in the first place.

06/14/2014 01:18
moondanc 
06/14/2014 01:18
moondanc 
Re: Sooo Glad to Hear there is pain and I am not crazy.

econn:
My DC is not painful but limits the use of my hands. I was referred to a plastic surgeon who is skilled in NA, open fasciectomy and Xiaflex injections. His recommendation, in my situation (DC in left hand, nodules beginning in right) is to go with the Xiaflex for the L hand and wait and see on the right. His experience is that Xiaflex will be effective for 7-10 years and can be repeated if/as needed. I am still able to pretty much use my left hand but my right hand bothers me because the nodules make it difficult to mow the lawn or grip things.

Xiaflex was only approved for use in 2010. How on earth could your surgeon say it will be effective for 7-10 years???? There are absolutely no statistics (even from the studies) that show effectiveness anywhere near that length of time at 100%.

You might want to do some more research on this or ask your doctor to show you the studies with that length of time.. I had Xiaflex in 2007 in the FDA trials. Prior to that time I only had DC in one finger, one hand. I now have it in 3-4 fingers in BOTH hands. I'm not the only person reporting DC getting more more aggressive after Xiaflex. You also need to research and find out how Xiaflex can make hand surgery down the road much more difficult.

The site below says effectiveness/recurrence is about the same:
http://www.handcenter.org/newfile20.htm

This website says: In Februrary 2012 the German Institute for Quality and Efficiency in Health Care (IQWiG) reviewed collagenase injection and stated that so far no advantage of collagenase has been proven relative to PNF (NA) or classical hand surgery summary and MNT. Consequently the current vendor Pfizer withdrew Xiaflex from the German market in May 2012. Pfizer will terminate marketing of Xiapex in all of Europe in April 2013 but probably another marketing company will step in PhilBJ.

http://www.dupuytren-online.info/dupuytren_collagenase.html

AFAIK --but I could be wrong, someone please correct me if I am--there are no large scale long-term studies on Xiaflex. The CORD 1 & 2 studies were 48-60 months. I'd love to see a longer study, please post if you have one!

06/14/2014 08:53
wach 

Administrator

06/14/2014 08:53
wach 

Administrator

Long-term studies on collagenase

That's about the time that collagenase has been studied in trials. There can't be any much longer studies, at least not with a reasonable number of participants. Clayton Peimer, this year's winner of the Dupuytren Award http://www.dupuytren-online.info/dupuytren_award.html, presented 3-year data on recurrence after collagenase injection http://www.ncbi.nlm.nih.gov/pubmed/23200951. He had more than 600 patients and more than 1,000 joints treated, providing reasonable statistics.

Wolfgang

moondanc:
... AFAIK --but I could be wrong, someone please correct me if I am--there are no large scale long-term studies on Xiaflex. The CORD 1 & 2 studies were 48-60 months. I'd love to see a longer study, please post if you have one!


Edited 06/14/14 11:53

06/14/2014 20:22
moondanc 
06/14/2014 20:22
moondanc 
Re: Sooo Glad to Hear there is pain and I am not crazy.

Thanks. It's unclear to me, though, how this 3 year data relates to that presented from the CORDLESS study (link below). Data points seem to be the same. I can personally attest to how some of this data/measurements were obtained and it ain't pretty!

https://www.efort.org/wp-content/uploads...FORT13-3649.pdf

wach:
That's about the time that collagenase has been studied in trials. There can't be any much longer studies, at least not with a reasonable number of participants. Clayton Peimer, this year's winner of the Dupuytren Award http://www.dupuytren-online.info/dupuytren_award.html, presented 3-year data on recurrence after collagenase injection http://www.ncbi.nlm.nih.gov/pubmed/23200951. He had more than 600 patients and more than 1,000 joints treated, providing reasonable statistics.

Wolfgang

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literature   surgery   understanding   collagenase   acknowledged   Xiaflex   measurements   effectiveness   studies   injections   Consequently   presented   peer-reviewed   Dupuytren   participants   reasonable   recommendation   nodules   dupuytren-online   radiotherapy