| Lost password
313 users onlineYou are not loggend in.  Login
Dupuytren's Contracture for Newbies - Quickly getting past the Jargon
 1
 1
03/21/2008 08:49
conroym 
03/21/2008 08:49
conroym 
Dupuytren's Contracture for Newbies - Quickly getting past the Jargon

Being new to this forum I was rather put off by some of the jargon and could not find any quick way to find out what on earth people were talking about. I am hoping to start a thread where people who have already mastered the learning curve could help create some sort of overview and glossary. This sort of stuff that really should be available in the FAQ methinks.


Looking at this site there seems to be three treatment options

. Surgery
· Collagenase - a series of injections that dissolves the lumps
· Some references to a mysterious X Ray or Radio Therapy (RT) treatment????

Collagenase
--------------
The collagenase treatment is very confusing also referenced to as: -
AUXILIUM or AA4500 or XIAFLEX.

As far as I can work out Collagenase is the generic term for an enzyme that dissolves collagen, the stuff that the lumps are made up of. A company called AUXILIUM, who were using the trial name AA4500 and are now using the brand name of XIAFLEX, is developing this treatment. It is going through trials and is not likely to be available widely until 2009 (and maybe longer for people in the UK if we have to wait for NICE approval). (Google XIAFLEX or AUXILIUM).

Surgery
----------
Open fasciotomy. Fasciotomy simply means cutting the thickened tissue. (Another word for the thickened tissue is called fascia.) Open fasciotomy means that to get to the thickened tissue, the overlying skin is cut open. This allows the surgeon to see the thickened tissue, and then to cut it. The skin is then stitched back together. It is a relatively minor procedure which can be done under local anaesthetic as a 'day case'.

Needle fasciotomy. This is sometimes called needle aponeurotomy. What happens is that the surgeon pushes a fine needle through the skin over the contracture. He or she then uses the sharp bevel of the needle to cut the thickened tissue under the skin. In effect the needle acts like a 'saw' as the surgeon moves the needle too and fro to 'saw' through the thickened tissue. The procedure is done under local anaesthetic and can be done in an outpatient clinic.

Needle fasciotomy is also referred to as Needle Aponeurotomy or more frequently on this site as NA or NAC. Search YouTube for Dupuytren's Contracture and you can see this in action.


Which is the Best Treatment
-------------------------------------
As far as I can work out
· Xiaflex is the best option if you can wait for it, or get on a trial.
· Otherwise go for NA, as the chances of a good surgeon making matters worse are less than 1%.
. Full on surgery seems to scary to contemplate (I want to continue playing the guitar)
· I can’t comment on Radio Therapy. Is this a crackpot solution? Why would anyone be interested?


Other Impenetrable Jargon that I haven’t deciphered yet: -
PIP joint, MCP, OS

Any help appreciated!

03/21/2008 09:02
Wolfgang

not registered

03/21/2008 09:02
Wolfgang

not registered

Re: Dupuytren's Contracture for Newbies - Quickly getting past the Jargon

Hi newby,

I guess the best start is to look at the web site itself and then dig innto the (less structured) forum. Go to www.dupuytren-online.info and start reading. That will probably answer most of your questions. The forum might eb able to help with the remaining ones.

Wolfgang
PS: needle aponeurotomy on your list of therapies is not the same as surgery (it's minimal invasive). NAC is something diffeerent, it's a drug that is taken orally. Collagenase disssolves the cord but by far not completely, just weakens it, and is not yet approved by FDA as therapy. The choice of therapy also depends on the stage of the disease, you might have a look at http://www.dupuytren-online.info/dupuytr...therapies.html.

PIP = middle joint of the finger MCP = base joint of the finger OS = open surgery

Edited at 03/21/08 11:09

03/21/2008 16:01
TrevB 
03/21/2008 16:01
TrevB 

Re: Dupuytren's Contracture for Newbies - Quickly getting past the Jargon

Quote:




Surgery - It is a relatively minor procedure.

I can’t comment on Radio Therapy. Is this a crackpot solution? Why would anyone be interested?






Technically surgery might be classed as minor but the risk of complications, lengthy recovery, the likelyhood of kickstarting the disease into worse and the expectation of more than likely needing to go through it again make OS very unappealing.

Radiotherapy at low level could buy very precious time or even halt the disease. I've yet to understand the risks of such treatment which are desribed a very low or negligible. If you're willing to accept the risk then it's got to be a no brainer surely.

I hear what you say about NICE, we would probably need to travel (and probably fund ourselves) to recieve the new treatment once trials have finished.

03/22/2008 02:17
newman 
03/22/2008 02:17
newman 

Re: Dupuytren's Contracture for Newbies -

Hi Conroym-Australia Calling,
Welcome to the forum, when you go to http://www.dupuytren-online.info go to Surgery-technique -scroll down to 'Nodule Fasciectomy' open "LUCK" pdf file .After closing that file scroll down to 'Seegmental Aponeurectomy' Click on "MOERMANS"-scroll up on >index to "Early Results". Interesting reading of what goes on with Dupuytrens. Whilst you are there have a look at Radiotherapy.I 've had radiotherapy both for Dupuytrens and Ledderhose 6 months ago to try to slow or stop the progression. So far I am very happy.
After 15 hand surgeries including 4 large grafts I was happy to find radiotherapy. Ii is now my passion to get it made available here in Australia. Regards.




Edited at 03/22/08 04:19

03/22/2008 10:25
Wolfgang

not registered

03/22/2008 10:25
Wolfgang

not registered

Re: Dupuytren's Contracture for Newbies - Quickly getting past the Jargon

To Barry and Conroym:

I also like the thesis of Stephan Wilbrand which is fairly new (2002) and gives a good overview. He is now heading a department in Uppsala, Sweden, and is involved in the current phase 3 trial of Xiaflex in Sweden. We recently included his thesis on our list of literature http://www.dupuytren-online.info/dupuytren_literature.html ,

Wolfgang

09/03/2008 19:13
LindaB 
09/03/2008 19:13
LindaB 
Re: Dupuytren's Contracture for Newbies - Quickly getting past the Jargon


Linda in California, U.S.A


New people..Sorry if you feel we are talking over your heads...It takes a ton of reading..Go tot he sites provided and dig into it...www.thehandcenter.org. from there you can find Dr. Dinklers's web site and others...
There are a whole lot of pictures also....
Most of us did not have all of this information five years ago..We had to dig deep to get it...The people on the forum do all they can to help the new people..we cannot do it all.....you have to just start reading, printing,saving information so you can re read it again....
Thank you
and THANK YOU WOLFGANG

09/07/2008 22:44
Randy_H 
09/07/2008 22:44
Randy_H 

Re: Dupuytren's Contracture for Newbies - Quickly getting past the Jargon

OS = Open Surgery, of which there are variations, but all involve opening up the hand and removing all the diseased tissue.

NA = Needle Aponeurotomy

CHS = Certified Hand Surgeon

ASSH = American Society for Surgery of the Hand

AUXILIUM is the company that purchased the license for Collegenase from BioSpecifics that invented it but didn't have the financing to get it through the FDA.

And of course the FDA = Final Drug Arbitration :-)

 1
 1
Dupuytren   thickened   Newbies   aponeurotomy   dupuytren-online   Impenetrable   Contracture   treatment   Surgery-technique   complications   BioSpecifics   getting   Radiotherapy   fasciotomy   Collagenase   Surgery   thehandcenter   Aponeurectomy   kickstarting   Conroym-Australia