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hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??
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01/16/13 20:54
Lanod 
01/16/13 20:54
Lanod 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

dannyboy:
Thank you all for your prompt and informative replies,..

I have made an appointment to see a specialist hand surgeon at a private hospital in Kilkenny on the 24th January next,...

Hello Dannyboy,

From your photos it looks like you need open surgery or NA (needle aponeurotomy) treatment. Most hand surgeons in Ireland will do open surgery for DD as this is the traditional treatment. However, only one ot two hand surgeons will offer NA and Xiapex (another needle treatment .. see 'Treatment' tab on this site). I suggest that you ask your clinic before you confirm your appointment if they offer NA treatment -- so that you might have a choice!. Please explore this forum for insight on the NA treatment.

I do not know if Kilkenny offer NA treatment. As far as I know the following two clinics in Ireland do NA and/or Xiapex procedures:

Mr. Colin Riordan at thre Blackrock Clinic, Dublin: www.handclinic.ie

Mr. Kieran O'Shea, St. James Hospital, Dublin.

I don't know what your issurance status is (VHI etc.) . You might also consider taking a Ryanair flight to Paris for NA treatment. There are experiences of such trips to Paris reported here on this forum and I understand that costs are very reasonable.

I wish you well with your condidtion - and YES you do need to seek professional advice right now - because if you leave the condition develop any longer - then there will less hope of a good correction.

01/17/13 08:20
Randy_H 

Moderator

01/17/13 08:20
Randy_H 

Moderator

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

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)

01/17/13 11:35
Seph 
01/17/13 11:35
Seph 

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

Dannyboy; I'm with Randy_H on this. I really don't get why anyone would turn to surgery before trying all the other options. Sure there are people who have had good outcomes from surgery but I suspect that those are people who were going to have a good outcome anyway.

I have two close friends with DD. One had surgery 15 years ago and has had no further until recently. He now has it in other parts of the same hand but still only one hand and no feet. Maybe surgery is the right option for him. The other friend has DD in both hands and has now had 6 operations and he has cut off all his other options. He has nerve damage and the DD is starting to be a serious problem for him.

Yes with NA the condition is likely to come back and if you have a bad case it will be back within 12-18 months but NA is a simple procedure that takes 20 minutes. Just go back and do it again.

I have no doubt that when you meet with your hand surgeon he will tell you that you need surgery. Surgeon = surgery. As a rule they are happy to wait but they do surgery.

You will be told about nerve damage if you try NA. Sure its possible but the difference with NA is that the doctor will know instantly if he/she touches a nerve (Your reaction will tell them). With surgery you won't know until too late as you can't feel anything with a nerve block or a general.

You have probably left it a bit late to get a good result but you should get a big improvement with NA. If you are not happy with the result get surgery next year.

My suggestion is that you see Dr Badoit or Dr Manet-Chopin in Paris. A return flight to Paris will cost you about 100 euros from Dublin with Ryanair or AER Lingus and the NA will cost you 250 euros per hand. Send the pictures that you put on this web site to either doctor and make an appointment direct. Set the appointment for late morning and you can fly to Paris get a finger straightened in the morning, lunch in Paris then home for dinner.

You are lucky. Being so close you can go back for NA every twelve months if you need to.

01/17/13 14:02
dannyboy 
01/17/13 14:02
dannyboy 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

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

01/17/13 16:58
dannyboy 
01/17/13 16:58
dannyboy 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

Lanod:
dannyboy:
Thank you all for your prompt and informative replies,..

I have made an appointment to see a specialist hand surgeon at a private hospital in Kilkenny on the 24th January next,...

Hello Dannyboy,

From your photos it looks like you need open surgery or NA (needle aponeurotomy) treatment. Most hand surgeons in Ireland will do open surgery for DD as this is the traditional treatment. However, only one ot two hand surgeons will offer NA and Xiapex (another needle treatment .. see 'Treatment' tab on this site). I suggest that you ask your clinic before you confirm your appointment if they offer NA treatment -- so that you might have a choice!. Please explore this forum for insight on the NA treatment.

I do not know if Kilkenny offer NA treatment. As far as I know the following two clinics in Ireland do NA and/or Xiapex procedures:

Mr. Colin Riordan at thre Blackrock Clinic, Dublin: www.handclinic.ie

Mr. Kieran O'Shea, St. James Hospital, Dublin.

I don't know what your issurance status is (VHI etc.) . You might also consider taking a Ryanair flight to Paris for NA treatment. There are experiences of such trips to Paris reported here on this forum and I understand that costs are very reasonable.

I wish you well with your condidtion - and YES you do need to seek professional advice right now - because if you leave the condition develop any longer - then there will less hope of a good correction.

Thank you for your advice,..i spoke with Dr Riordan`s office earlier and they were very helpful, but expensive,...apart from the consultation fees, the surgery and/or NA procedures would likely cost several thousand Euros,..which came as a surprise to say the least !!......i think a trip to Paris in the spring sounds much better,..

I also phoned for Dr O`Shea in St James but the clinics are closed until the 22nd of Jan,...

Thanks again for your advice, much appreciated,..

01/17/13 21:12
Lanod 
01/17/13 21:12
Lanod 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??


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

01/18/13 07:07
Seph 
01/18/13 07:07
Seph 

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

dannyboy:
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
Yes Danny I am some distance away. I live in Sydney so its a 24 hour flight to get to Paris. I have had NA done in Paris 5 times. Initially because I couldn't get it done in Australia and now because those starting to do it here have not spent time learning from those that have done thousands of procedures. Seems safer to go to the place where the knowledge and experience is and I get to have a couple of weeks in Europe every year or so.

01/18/13 07:39
Randy_H 

Moderator

01/18/13 07:39
Randy_H 

Moderator

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

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.)

01/19/13 00:05
Seph 
01/19/13 00:05
Seph 

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

Randy_H:
Seph,

Six flights from Sydney 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.)
Not quite 6 flights to Paris. The way I have done it is to fly so that I arrive in Paris on a Thursday and get one hand done the following day. I then spend a week wondering around Paris or somewhere else in Europe and get the second hand done the following Thursday or Friday and fly home the following day.

So three trips could cover 6 procedures and I get a holiday in Europe at the same time. I find that by turning things like this into an adventure you can make the disease feel like a positive rather than a negative. On our last trip my wife and I flew down to Barcelona for the week.

01/19/13 07:09
Randy_H 

Moderator

01/19/13 07:09
Randy_H 

Moderator

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

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. :)

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