Dannyboy

It's almost guaranteed that if your MD has no experience with NA he will tell you that it is dangerous. He will site possible nerve damage and that rates of recurrence are higher than with Open Surgery (OS). Then your suggest that Eaton with over 2,000 procedures has shown that the Red Hearing of Nerve Damage with NA is plainly false. It's actually safer than OS. With recurrence however, he'll be right. But....given the repeatability of NA vs OS as well as the cost as well as the recovery time as well as the lack of scar tissue as well as long tern side effects, NA wins hands down (no pun intended)

This goes for Xiaflex as well as NA as Xiaflex are very similar in these regards, except that Xiaflex is 4-5 more expensive.

If he is opposed to both I suggest you exhaust your options before submitting to OS. Why would you have your entire engine rebuilt when all you need is a good valve job?

I am glad you have decided to take action here. An as I stated, the sooner the better.
If NA or Xiaflex is unavailable I suggest you invest in your hand and go to France and have NA. My left hand was treated with OS and my right hand with NA. I'll now need to correct all the typing errors caused by my left. It's that simple. Sure a lot of people have had great results with OS. I've met them. I've seen their hands.The MCP joint is easier with OS. You have PIP joint issues (so have I). Plus, a general rule in medicine is that the least invasive procedure should be tried first before the more invasive. OS is the Open Heart Surgery of the hand. Court of Last Resort.

(Your results may vary. Batteries not included)

Thank you Seph,.....for your honest and straightforward reply,..

I have actually read what you have said several times and i feel much
better now,..last week i really didn't know much about dupuytrens and i was
basically ignoring my "condition" but i realise that i now have to act as
soon as possible,,...and i am glad that i have found this website and this
forum,...it really has been a big help,..

I think i will send some photos to the Doctors in Paris you have suggested
and see what they say and recommend,..

When you say "you are lucky. Being so close you can go back for NA every
twelve months if
you need to",.... i am assuming you live outside Europe ?

Kindest regards,

Danny

Thank you for your advice,..i spoke with Dr Riordan`s office earlier and they were very helpful, but

Thanks again for your advice, much appreciated,..

Hello Danny,

I am (obviously) Irish like yourself. One would think that we Irish - of Celtic decent - would have some leadership on this disease. However, our medical community are very conservative on this disorder. If it were not for this forum I would be at a complete loss for information and support. I developed DD in 2011 and got early radiotherapy (RT) threatment in Galway - with Dr. Sullivan who is listed on this forum. I was probably his second patient for DD ( I can hear Larry's voice right now - saying do not be a guinea pig you have only one pair of hands!!!)

I believe that your stage is too advanced for RT. If I were you I would consider the following:

1) If you have insurance (equivalent of the old VHI level B) then go the Dr. Riordan and discuss NA treatment possibilities. Do not agree to surgery at this stage but if agrees to NA then think about the option of using him or Paris for NA. But do not wait long. Paris have much more experience on NA.

2) I would agree with Randy and Seph that you should do a course of NA treatment before you consider any surgery. If you do not have insurance then go to Paris - as advised by them - if you can at all afford this option. If I was you I think that I would be on that plane right now. It is really nice to think that you can send photos to the Paris doctors before you set up any appointment.

I wish you well. Please feel free to PM me - but I cannot really offer any advice beyond the above,

Slan, Don

Seph,

Six flights from Sidney to Paris for NA? Now that is commitment and an investment in your hand. Bully for you. I would have done the same thing had I known what I know now. Admittedly I'm a bit rabid in my opposition to Open Surgery (OS). And for good reason. None of you want to live with my Left Hand. Really.

Disclaimer: some people do well with OS, especially with the MPC joint. (But I'm 0 for 1 with an PIP joint and will not go back under any circumstances.)

Thanks for coming clean on that Seph. :)

But still, you are not overreacting or being paranoid about avoiding full OS. Sure lots of people have had a perfectly good experience with OS. But a whole lot didn't. Let's pole the Hand Surgeons who performed OS low these may years. All one need do is go to https://www.xiaflex.com/locator.php and see how many US Hand Surgeons now want to be included in the list who now offer Xiaflex. How about just about all of them.

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.

Ok, that's a bit harsh considering that they actually thought OS was the only thing they had to offer. But that's not been true since the French invented NA years ago. But, never mind.

So Seph, hopefully Xiaflex will not be available to you locally. There goes your excuse for World Travel. :)