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hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??
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01/20/2013 15:43
callie 
01/20/2013 15:43
callie 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

I don't think that is the "only" slant. There are other, more valid, explanations.

You said, "The only explanation for their incredible conversion to a non-invasive procedure (very similar to NA) is that they, more then anyone, knew what OS really does to a hand. And all their rhetoric about how OS was no big deal. Their collective feet now betray their words."

The other slant is dominated by money (it almost always is). Xiaflex every three or four years (or more often) is considerably more money than surgery with fewer returning patients. The Xiaflex profits stay inside the doctor's office, whereas surgery costs/profits are spread out to various entities including short term hospital costs. The least expensive part of my surgery costs were from the surgeon. The three hours of the facility costs (hospital) dwarfed the cost of the surgeon.

02/20/2013 10:33
davidw 
02/20/2013 10:33
davidw 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

Hello everyone. I read this thread & forum with much interest. I have DD, stage 2 or maybe stage 3, one on both hands. Little finger on right hand has developed quite quickly over the last couple of years. I went to my local GP Doctor in England (Gloucestershire) who knew the name of of what i had, but little else! I was sent to a specialist, who was a Mr and surgeon, not a Doctor, and wore a pink bow tie and seem to accuse me of drinking too much! I said it developed when I built my own house 10 years previously. He said I could try the Collangenese Injection at £600 a 'pop' if i didn't want OS. After I rang his PA, she said it was £1500 per injection as the 'needles and everything else' was quite expensive and i might need two injections per hand! I said that's not what the Mr had said! Now I know why Doctors are always playing golf! A friend of a friend had OS from the same surgeon, his hands are in a very bad way now and more nodules are developing.. I've been trying to just forget about my DD but I really know that's probably not a good idea for later years. It sounds like RA may be the best course of action after reading this thread. I think I'm too faint hearted for OS, but mainly because as it sounds like its overkill.. and a bigger risk. Everyone seems to be talking about RA to be done in Paris as the're the best and most experienced. Is that correct? Can you please give further details of french addresses etc and why it's a good idea to go there? I couldn't find details on the forum. Or is there anywhere in the UK highly recommended? Any advice would be most appreciated at this point in time. Thank you very much. David W. PS I've now found the page of addresses on the website. I see there are some in London as well as France. I will try London first. However, any advice is welcome. Here are two pix of my hands.

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02/20/2013 11:44
dannyboy 
02/20/2013 11:44
dannyboy 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

Hello David,

Danny here in Dublin,...i have the same as you but in both of my small small fingers on both hands that are now at 90 degrees bend or slightly more,..

I decided in Jan this year to have something done about this (kept putting it off for years), but in Ireland it is hugely expensive and and the relatively few doctors here that knoew anything about Dupuytrens were all for open surgery which i was very wary of,...anyway i did some research and thankfully discovered this site,....and Seph (amongst others) on here who is living in Aus has been very helpful to me with advice,...

So on the 1st of March i travel to Paris to see Dr Marie Chopin for the N/A needle jobbies on both hands which hopefully will go someway is straightening my pinkies, we shall see,... but it is much better than surgery,..and the cost is Euros 200 per hand,...

Contact details are
Dr Manet-Chopin works in a private hospital but on some days she does NA in consulting rooms next to metro Place d'Italie. The consulting rooms have an english speaking receptionist from 2pm t0 6pm (Ph + 33 1 43 37 90 47)

I will let you know the results in two weeks time and good luck with what you decide to do,..

02/20/2013 12:30
davidw 
02/20/2013 12:30
davidw 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

Hi Dannyboy

Very interesting and agree OS sounds drastic and better to try other methods first. I liked the idea of the Collagenase Injections but after investigation, sounds like you need a few per nodule and for later stages almost certain. the cost therefore becomes too expensive/stupid and theres a risk it kicks off again anyway.. The NA sounds OK. I've sent a couple of e mails to the UK listed addresses on this website to get a reaction, but am very interested in yr Paris adventure. Please do keep us all updated and what transpires and wot results. Have you got an e mail address of them, in fact a full address , so i can plan hotels etc. From what i gather the french have been doing it longer than everyone else on this technique NA.

Bonne chance!

Davidw

02/20/2013 12:44
dannyboy 
02/20/2013 12:44
dannyboy 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

Hello David,

This is most of a mail that Seph sent ot me a few weeks ago,..which i am sure he wont mind me copying here;

" The way I have worked with both these doctors is that I have sent them photographs by email and indicated when I would like to see them ("Would it be possible for me to see you during the week of #####" or something like that). In both cases they have always responded within a few days.

The other thing is that there is no prior consultation. When you turn up they will do the NA procedure then and there. Very matter of fact with no fuss at all. They will see from the photographs that you have DD and that you need NA so they get straight into it. Don't do both hands at the same time as it is very important to keep your hand dry and clean for a few days to make sure the puncture wounds have fully closed over. In my case I haven't even been able to find the puncture wounds when I have taken the bandages off.

The Contact details:

1) Dr Manet-Chopin

mariepascale manetchopin <mariepascalemanetchopin@sfr.fr>

Dr Manet-Chopin works in a private hospital but on some days she does NA in consulting rooms next to metro Place d'Italie. The consulting rooms have an english speaking receptionist from 2pm t0 6pm (Ph + 33 1 43 37 90 47)

2) Dr Badoit

BADOIS <dr.f.badois@orange.fr>

13, Avenue du Général de Gaulle
95 230 SOISY SOUS MONTMORENCY
PH + 33 1 34 28 08 00

As I have said above Dr Badoit speaks good english but his premises are out of Paris so slightly more complicated getting there. You take the train from Gare du Nord to Enghien Les Bains Station then take the N°11 to Hôtel de Ville de Soisy.

Hope that all helps.

Seph"

02/20/2013 17:29
davidw 
02/20/2013 17:29
davidw 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

Thanks for all that Dannyboy. Best of luck and do let us know how things turn out.

davidw

02/20/2013 18:31
spanishbuddha 

Administrator

02/20/2013 18:31
spanishbuddha 

Administrator

Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

There are surgeons performing NA in the UK, including on the NHS. This site has an example of some: http://dupuytrens-society.org.uk/TLinks.html

Xiapex is also available on the NHS in some regions, see http://dupuytrens-society.org.uk/Collagenase.html

Edited 02/20/13 20:35

02/22/2013 05:53
Randy_H 
02/22/2013 05:53
Randy_H 

Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

Thanks for that list spanishbuddha. Looks like NA has really found a home in the U.K. Of note was the fact that of the 19 MDs listed only 3 offered Surgery only. That means that 85% offer less invasive procedures as well. Just eight years ago that would have been more like 0%. For those of us who have been watching for that long we have to be very pleased to see that the reign of "Surgery Only" is just about dead. (Not that OS is not occasionally the right choice)

On the other hand, how would you like to go see a CHS who you have been told to trust not even mention NA or Collegenase as a possible consideration? What's up with these guys? Would Auxullium have spent multiplied millions of dollars to get Collegenase FDA approved if OS had no problems and a less invasive approach wasn't badly needed? I think not. Seriously, millions $$$$$.

But here they still are, scalpels at the ready.

Wolfgang, are you going to let those Brits them steal our logo just like that?

02/22/2013 07:58
spanishbuddha 

Administrator

02/22/2013 07:58
spanishbuddha 

Administrator

Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

Randy_H:

Wolfgang, are you going to let those Brits them steal our logo just like that?
No stealing involved just collaboration. The BDS are grateful for the IDS support.

07/22/2015 09:32
Lorrainehart 
07/22/2015 09:32
Lorrainehart 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

My husband has severe DC on both hands. Cannot do push up or anything that requires pressure on the hands. He has had surgery twice and now the fingers are bending over again. He was operated on by Geoff Ekker at the South Perth Hand Clinic. Dr. Ekker is doing the collegenese injections. Unfortunately we found the cost (approx $5000-$6000) too prohibitive at the moment. Hopefully the treatment will soon become government subsidized. The last lot dof surgery cost $2500.
Apart from all the expense, my husband is so frustrated with how this disease affects his everyday life. The Collegenese injections give no guarantees either.

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