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07/26/2012 01:30
Metzie 
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07/26/2012 01:30
Metzie
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Re: Personal experience
I have DD & LD and I have heard many testimonials and it is true, it just keeps comming back. For me, I have been researching prosthetic limbs as I am considering amputation to rid myself of the Disease (Hands & feet). I feel as though (For me) there is no-other choice as nothing else works. I refuse to go through the remainder of my life battling this S*@t... I am already on Disability for other health issues anyway, and I have full Insurance to pay for it. I am prepared to ask my Surgeons to do this for me being no-one has a success story, despite multiple different treatments. I have dealt with enough in my life without suffering needlessly with this now. I haven't read about anyone going to this extreme, but I guess I will have to be be the first gutsy person to do it. I have already given it plenty of thought, and as long as the surgeons will do it, I will give them the green light. So long DD & LD, you can kiss my @**!!
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07/26/2012 01:37
hammer 
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07/26/2012 01:37
hammer
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Re: Personal experience
I wish I could say hey this treatment is better than the other but Ive had all of them done on myself,NA failed my cords were so thick.I was Dr Bourlands only failure in over 1,200 NA releases.To say I was dissapointed is an understatement.Ive had 4 Xiaflex injections in my right hand since November and it hurts big time.So im just gonna try and keep semi straight till some one comes up with a permanent fix.I been thinking about getting my right pinky fused straight,My left pinky has been fused for 10 years and DD cant bend it,Dave
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07/26/2012 01:37
cokiwi 
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07/26/2012 01:37
cokiwi
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Re: Personal experience
Wow Metzie, that does seem extreme! I hope the Drs can find some way to help without going that far.
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07/26/2012 01:55
hammer
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07/26/2012 01:55
hammer
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Re: Personal experience
That is extreme,Im sure they r cookin up something new,Hang in there ,Dave
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07/26/2012 02:31
Seph 
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07/26/2012 02:31
Seph
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Re: Personal experience
Hammer; Both my little fingers are fused at a 35 degree angle. One following conventional surgery and the other because I left it too long. I was delaying surgery and hadn't heard about NA. I'm a kiwi living in Australia and options are limited down here.
I am resigned to having NA now every 2-3 years but I am surprised at the fuss and apparent difficulty that the new surgeons see with NA. It seems to me that the guys with more experience don't see the same obstacles.
To deal with the failed NA procedure on your hand I suggest that you take a weeks holiday in Paris and see if that makes a difference. I don't know what an NA procedure costs in the USA but I suspect it is a lot more than the $2-300 that it costs in Paris. I'm guessing that you can pay for your air fare on the saving.
Dr Badois has done more than 10,000 NA procedures. You simply need send him photographs and book a time. One 20 minute visit per hand.
I'm told Dr Manet is very good also and I have recently sent him photographs. His response was to tell me that NA needs to be done regularly and I should book an appointment and get it done again. I am trying to decide whether to see him later this year or go back to Dr Badois.
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07/26/2012 05:35
wach  Administrator
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07/26/2012 05:35
wach Administrator
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Re: Personal experience
Hi hammer,
here is another option: if your cords are too thick or if the situation is generally too difficult, you could have a knife fasciotomy. The surgeon would open the skin and cut the cord with a scalpel. He could even cut out a little segment of the cord to reduce recurrence, as Moermans suggested http://www.ccmbel.org/These.html . This open fasciotomy has the advantage that the surgeon can see the cord and the sourrounding tissue and make sure to cut it completely without damaging anything else. Still it is by far not as damaging as the usual fasciectomy that tries to remove all Dupuytren's tissue and opens the palm for that.
BTW, this open fasciotomy is what Baron Dupuytren had demonstrated in 1831. I know of a German patient who had had a series of hand surgeries before and NA/Xiaflex were no options anymore. Classical surgery wasn't recommended either because he had already a lot of scarring and concern was that the blood flow wouldn't work well anymore after surgery. So he had this open fasciotomy on three fingers and is quite happy with the results, including recovery.
So many options ...
Wolfgang
hammer:
I wish I could say hey this treatment is better than the other but Ive had all of them done on myself,NA failed my cords were so thick.I was Dr Bourlands only failure in over 1,200 NA releases.To say I was dissapointed is an understatement.Ive had 4 Xiaflex injections in my right hand since November and it hurts big time.So im just gonna try and keep semi straight till some one comes up with a permanent fix.I been thinking about getting my right pinky fused straight,My left pinky has been fused for 10 years and DD cant bend it,Dave
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07/26/2012 06:23
PAUL_K
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07/26/2012 06:23
PAUL_K
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Re: Personal experience
Hi seph you wouldn't have an email address for Dr Badois would you??
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07/26/2012 07:11
Seph
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07/26/2012 07:11
Seph
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Re: Personal experience
Paul; Wolfgang is correct the email address I have for Dr Badois is dr.f.badois@orange.fr
His english is very good so no difficulty in communicating.
If you want to check out Dr Manet the email address I have is mariepascalemanetchopin@sfr.fr
Dr Manet's english is not so good but the message is clear. His email to me is below:
"Mr LERMUSIAUX send me your mail. It's possible to treat your hands by aponeurotomy with the needdle. The recurrence is very frequent in this desease. And it's better to treat by aponeurotomy regularly. I send an explication of the procedure. If you want an appointment say me by mail. Best regards Dr MP MANET"
I had emailed Dr Lermusiaux as he is credited with discovering NA as a treatment. Apparently Dr Lermusiaux is now retired.
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07/26/2012 11:17
hammer
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07/26/2012 11:17
hammer
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Re: Personal experience
Paris sounds great!!I am gettin ready for another multiple injection clinic with Xiaflex.It starts in the next few weeks .They will be giving me up to 5 injections in my left hand this time.My right hand is still straight from the last round of injections except for the pinky which the tendon is streched from be contracted for so long.This Dr is on our side as far as fixin the problem.I dont believe he he is money drivin.If i can get them released and there is 3 cords in the left hand thenI can get on a regular NA program with Dr Bourland.Dave
Edited 07/26/12 14:21
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