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Has anyone had treatment for Dupuytren's contraction ?

  • 29-01-2011 10:23am
    #1
    Registered Users Posts: 4,444 ✭✭✭


    I have being doing some research on the net into treatment for this. Seemingly there is a treatment called "Xiaflex" which is an alternative to surgery. A substance is injected which dissolves the "knot". Basically I can live with this condition, but as I play guitar in a band, to be rid of it, or have the contraction reduced, could only be a good thing. Did anyone ever have the above treatment, or if you had surgery, how long was it before the hand healed ?


Comments

  • Registered Users Posts: 34 drfrank


    Its a collagenase injection, which dissolves the band. To date it is unlicensed in Ireland. The surgery can vary depending on the severity of the disease and can take anything from a couple of days to get back to normal to a couple of weeks.

    Make sure you are being operated on by a surgeon who does lots of these cases, mainly plastic surgeons and some orthopaedic surgeons who have an interest in hand surgery.


  • Registered Users Posts: 4,444 ✭✭✭Rigsby


    drfrank wrote: »
    Its a collagenase injection, which dissolves the band. To date it is unlicensed in Ireland. The surgery can vary depending on the severity of the disease and can take anything from a couple of days to get back to normal to a couple of weeks.

    Make sure you are being operated on by a surgeon who does lots of these cases, mainly plastic surgeons and some orthopaedic surgeons who have an interest in hand surgery.

    Thanks for that drfrank ! I was curious as to if it was available in Ireland. It seems to be a lot better than surgery. So, if I want to do anything about it, I guess the latter is my only option. :(


  • Registered Users Posts: 975 ✭✭✭genie


    My Mum has had surgery (in England, where she lives) to correct this. It had to be surgery because it was very advanced (she had kept putting it off) and her ring finger and little fingers were almost touching her palms.

    She had her left hand done first early last year and the bandages and stitches were removed after one week. The removal of the stitches was quite painful she said, because they were tight, but overall she said that there was very little pain and the scar healed very quickly.

    Her right hand was done in October of last year. The right hand seems to have healed better than the left, which still has a bit of a raised scar, but full power has still not returned to her right hand.

    The condition runs in Mum's family, who are Dutch, of Scandanavian origin and I've read that this condition is common in people with this ancestry. My grandfather had it and one of my Mum's sisters had it, too, but she had it dealt with far sooner than my Mum.

    Get it seen to sooner rather than later. :)

    Hope this helps! :)


  • Registered Users Posts: 4,444 ✭✭✭Rigsby


    drfrank wrote: »
    Its a collagenase injection, which dissolves the band. To date it is unlicensed in Ireland.

    I am reviving this thread, wondering in the intervening fourteen months, has this treatment become available in Ireland ?


  • Registered Users Posts: 126 ✭✭Katy89


    I have this strange dupuy...whatever as well and went to 2 different doctors last year. nobody told me of this possibility you interested in.
    they were all recommending an operation. and this is in germany, health system is quite advanced here.

    so I don't know, but I wouldn't do something which isn't tested and approved already.
    also, they told me, even after an operation it's quite likely that it's reappearing and so have another operation sooner or later. so they told me to have the operation when the finger is roughly angled of 30 degree.:rolleyes:

    I know you play guitar and want to get rid of it at all, just wanted to give you the general infos which I got from 2 professional hand surgeons about it.:)


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  • Registered Users Posts: 4,444 ✭✭✭Rigsby


    Katy89 wrote: »
    I have this strange dupuy...whatever as well and went to 2 different doctors last year. nobody told me of this possibility you interested in.
    they were all recommending an operation. and this is in germany, health system is quite advanced here.

    so I don't know, but I wouldn't do something which isn't tested and approved already.
    also, they told me, even after an operation it's quite likely that it's reappearing and so have another operation sooner or later. so they told me to have the operation when the finger is roughly angled of 30 degree.:rolleyes:

    I know you play guitar and want to get rid of it at all, just wanted to give you the general infos which I got from 2 professional hand surgeons about it.:)


    Thanks for that. What renewed my interest in this particular treatment was a health programme I watched the other evening called "Embarrassing Bodies" (:pac: ). It is a U.K. programme. So it is obviously available there. The procedure seemed quick and simple. The patient got an injection, then his hand was bandaged up. It did not show how long it was before the bandage came off, but from my research, I think it is around twenty four hours.

    Seems almost too good to be true does n't it ?


  • Registered Users Posts: 126 ✭✭Katy89


    sounds interesting and definately worth investigating. I'm just the type who's a bit cautious with things which are not used that long and therefore there's not that much experience with it.

    I remember, there's another treatment where are needles put into the affected area to destroy it. I ask the doctors about that as well, but they weren't recommending it.
    it's really hard to say, I have to trust the doctors although nobody knows if they maybe recommend secretly the treatment which is most lucrative for them.....I don't know, it's a strange thing anyway, isn't it?
    and they say it's genetic, but nobody else in my family has it:(


  • Registered Users Posts: 4,444 ✭✭✭Rigsby


    Katy89 wrote: »

    I remember, there's another treatment where are needles put into the affected area to destroy it. I ask the doctors about that as well, but they weren't recommending it. (

    This treatment sounds similar to what you say. A substance is injected into the "knot" and it breaks down the tissue.


  • Registered Users Posts: 126 ✭✭Katy89


    it was more that there's a fine (or more than one) needle which 'pokes' into the area very often to destroy the knot and the strained cord.


  • Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    There are options outside of surgery for this Dupuytrens condition. However, hand surgeons in Ireland do not seem to offer any treatment beyond waiting for finger contraction and then doing conventional surgery.

    The NA (Needle Aponeurotomy) threatment is widely available in the UK. See this site for really good information on the Dupuytrens condition:

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

    In the above site go to the 'Treatments' tab and then look at NA - and then a list of UK doctors and clinics that offer the service.

    Does anybody know of a clinic in Ireland that offers this service?

    Note - Dupuytrens is a common condition in Ireland (of Celtic and Viking decent) with some 20% of people over the age of 50 showing symptoms of the condition. However, it is amazing that we hear so little about this condition.


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  • Registered Users Posts: 34 drfrank


    DrTony wrote: »
    There are options outside of surgery for this Dupuytrens condition. However, hand surgeons in Ireland do not seem to offer any treatment beyond waiting for finger contraction and then doing conventional surgery.

    The NA (Needle Aponeurotomy) threatment is widely available in the UK. See this site for really good information on the Dupuytrens condition:

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

    In the above site go to the 'Treatments' tab and then look at NA - and then a list of UK doctors and clinics that offer the service.

    Does anybody know of a clinic in Ireland that offers this service?

    Note - Dupuytrens is a common condition in Ireland (of Celtic and Viking decent) with some 20% of people over the age of 50 showing symptoms of the condition. However, it is amazing that we hear so little about this condition.

    Not sure if DrTony works in Ireland or if he/she has any medical background???
    All decent hand surgeons could offer this very simple treatment !
    Needle fasciotomy/cordotomy can be very effective and was popularised in France. It is only suitable for the most 'basic' of disease as it simply cuts the cord as opposed to removing it.

    Compared to fasciectomy (removal of the cord), needle fasciotomy is short lived and as such longterm results are disappointing.
    However, that is not to say that it has no role in the treatment of the disease. Any surgeon you see should explain all the options available !!


  • Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Dr. Frank said - more or less - that any hand surgeon can do NA (Needle Aponeurtomy) for a hand with a Dupuytren's condition. This is a needle treatment that can break the cords without resorting to more invasive surgery. However, I have asked my surgeon in Dublin about this and she assured me that no surgeon in Ireland will do this - as this is a procedure which is common in France only. The only solution in Ireland is conventional surgery on the hand.

    Charlie.


  • Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Yes - in fact I found out that there are some doctors in ireland that do less invasive treatment for Dupuytrens hand condition. For example Dr. Kieran O'Shea in St. James and Dr. Colin Riordan in the Blackrock.

    Charlie


  • Registered Users Posts: 1 Clancy7


    Coming to this question late so not sure if this helps...I had the needle aponeurotomy procedure done in Paris.
    No problems. a simple 15 minute procedure. Definitely recommend it instead of surgery.


  • Registered Users Posts: 383 ✭✭Svetti Arss


    Clancy7 wrote: »
    Coming to this question late so not sure if this helps...I had the needle aponeurotomy procedure done in Paris.
    No problems. a simple 15 minute procedure. Definitely recommend it instead of surgery.

    Looks like the injection might be available over here.

    http://www.imt.ie/clinical/2012/08/clinical-update-on-dupuytren%E2%80%99s-disease.html

    Where did you have this done in Paris and what was the cost?

    Thanks.


  • Registered Users Posts: 27,939 ✭✭✭✭looksee


    DrTony wrote: »
    Note - Dupuytrens is a common condition in Ireland (of Celtic and Viking decent) with some 20% of people over the age of 50 showing symptoms of the condition. However, it is amazing that we hear so little about this condition.

    I have this but it is not progressing very quickly - about 70 degrees in just one hand. My general appearance would be Norman and I have a particular interest in Vikings so its quite interesting that I have it!


  • Registered Users Posts: 4 BoardIrl


    Dupuytrens - Paris
    ==============
    Looksee - if you have 70 degrees contracture then you should seek advice soon. The longer you postpone this the less likely will be your chances for successful treatment.

    Svetti - For needle treatment in Paris, here is the information. Cost is about 200 euro or 250 euro per hand. You can email questions and photos to the doctor in advance. She will respond within a few days. You can be treated on the first visit - no need for an intitial appointment and then a return visit. Here is the information:

    The Contact details:

    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)


  • Registered Users Posts: 383 ✭✭Svetti Arss


    Has anyone on this forum been treated by Dr Manet-Chopin in Paris for this condition?

    Thanks, SA


  • Registered Users Posts: 4 BoardIrl




  • Registered Users Posts: 27,939 ✭✭✭✭looksee


    BoardIrl wrote: »
    Dupuytrens - Paris
    ==============
    Looksee - if you have 70 degrees contracture then you should seek advice soon. The longer you postpone this the less likely will be your chances for successful treatment.

    :o no, not 70 degrees, I'm saying it the wrong way round, more like 20 degrees! Thank you for your comment though.


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  • Registered Users Posts: 3 Pamany


    Hi,
    New to Boards.ie and this thread.
    I have Dupuytrens.... for a number of years and its progressing.
    I had surgery on my left little finger(then at approx 30degs) six years ago and a little into that area of my left palm
    I now have nodules on both palms and three fingers on left hand(30 deg plus) and right index finger, 45 degs (others slight onset).

    Has anyone had recent treatment/surgery/NA?


  • Registered Users Posts: 3 Pamany


    Pamany is also Irish.

    Not quite 90degs yet with any finger but painful at times and daily use of fingers/hands often awkward.
    NA seems an interesting option.


  • Registered Users Posts: 4 BoardIrl


    Pamany,

    I strongly advise to look at this page:

    http://www.dupuytren-online.info/Forum_English/board/dupuytren/hmmm-xiapex-or-na-or-maybe-surgery-or-then-again-maybe-na-0_1426_2.html

    Please sign up and private message Seph to get first hand account etc. of NA experience. You need to treat this condition soon to improve your situation as longer progression will make future treatment more complex and less successful. The link I have suggested is the Dupuytrens Society which is a completly free service with no costs - not even ads - involved. Please post if you want further advice etc. I urge you to take some action.


  • Registered Users Posts: 1 jblynch


    Hi,
    Apologies - arriving at this thread late!
    I advise treatment when you cannot comfortable leave your hand flat on the table. Needle aponeurotomy is a procedure under local anaesthetic that is done by many surgeons in Ireland - a trip to Paris is great but for leisure! Collagenase (xiapex) injection is available both on the public and private systems. Insurance companies pay for this since 2015. These treatments are available at the Mater Private Cork with Dr. Jenny Lynch


  • Registered Users Posts: 10 Jull


    I've never heard about this :) Just can hope you'd be better!


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