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What age are most of you? I am 36 and have it pretty bad...
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01/15/2006 23:41
Larry #1

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01/15/2006 23:41
Larry #1

not registered

whoops

Actually, I should have said, I am not the larry who posted the pro-surgery nonsense below. I did make the initial post in response to the age question, my post is dated 1/7/2006 4:09:11 PM.

Perhaps Larry #2 can alter his name to avoid confusion.

01/16/2006 23:29
Graeme

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01/16/2006 23:29
Graeme

not registered

Pro Surgery Post

The post by "Larry" about four below my post is one that I believe is merely "stirring up", and shouldn't be taken seriously.
This is after all a NA site, albeit a Biospecifics site. NA has become our main focus and it is really the only real advancement in DC treatment of late.
Then again there are alternative treatments discussed here - Suzie Q. -for instance looking into a-l-c a nutritional suppliment.(on'ya Suzie!) There are many others.
We should not have to opologise or defend too vigorously our position for the furtherence of NA.
My recent NA was a no brainer. I had NA on both hands and one foot done. Cost 195 Euro, and NO time off work.
OS would have cost about $5,000, about four weeks off work, and about $10,000 in wages for a replacement worker. My work is quite physical so I can only return when fully recovered.
My father in-law is a Doctor and is amazed at my NA results. The word is spreading.

01/16/2006 23:09
peggy

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01/16/2006 23:09
peggy

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age

I am 43, diagnosed at age 25. Both hands are affected, and have ledderhose in both feet. Right hand was operated on five years ago, and both feet have been operated on many times.

01/16/2006 23:28
Frances

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01/16/2006 23:28
Frances

not registered

Support

Larry,

It's important to keep your eyes on the dates that posts were made as this forum has been going on for years.

Many posts ago there were vigorous surgery vs NA discussions with both sides almost on polar opposites but that ended a little over two years ago. Surgery proponents became more willing to accept NA when NA patients kept reporting wonderful results. Staunch NA proponents also became more willing to accept surgery when NA practitioners began refusing DC patients for NA on the basis that they were to far advanced or that their DC rate of return was simply to high. So...both sides moved towards the middle accepting that there is a place for both treatments on the 'Options' menu. The members of this forum have also discussed many other forms of treatment that also may help, everything from diet, excercise, prescription medication, and herbal treatments that may or may not work. So no, there is much more here then simply NA.

As for those of us who remain here and continue to advocate for NA, it is because NA is so viable but so few surgeons/doctors know about it. Heck, in my own province (Ontario) NA is still referred to as 'experiemental' and it is not eligible for coverage under out health care plan. They won't even listen to info about NA unless a doctor writes to them and asks...which isn't going to happen anytime soon for us as our famiy doctor called NA 'Hokus Pokus'. What nonsense we must overcome (eyes rolling). So now I'm looking for other avenues...ways to interest a surgeon(s) here in Canada....but first I must find a surgeon who is accessable (only ways you can see one is with a family doctor referal)...one who might be willing to listen....willing to do something outside the norm....pretty tall order....we'll see what happens...so much burocracy.


Frances




01/16/2006 23:38
Melissa

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01/16/2006 23:38
Melissa

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Support

Greetings,

I'm new on the site. I posted my case in the "women under 40" thread but I don't know if anyone is still reading it.

I have had OS twice; the latest only 2 weeks ago. Please forgive my not wanting to repost the details here as I am typing 1-handed.

I completely understand the NA advocacy, and do not argue with its proponents at all. However I do wonder if there is a place for those of us who have had OS - *for whatever reason* to get support and advice that doesn't include hindsight "should have" advice. For me, my case is complicated and agressive, and I don't know that I would even qualify for NA. I had a lot more done than DC removal this go-round, and my first OS was done to remove what were thought to be ganglions pressing painfully on nerves. It wasn't until the ortho was in that he realized I had DC. So as much as I wish I had known and had the money for NA at the time, it's too late for recriminations or bitterness and I could use an understanding ear and some support.

If I am in the wrong place, I would be very grateful for advice regarding where I might look.

Thanks!

01/16/2006 23:39
Randy H.

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01/16/2006 23:39
Randy H.

not registered

No ~dq~should haves~dq~

Melissa

I'm sorry no one has replied to you so far. It may be that your situation and ailments are outside the experience of many here. Recovering from OS in general I do know about. As you probably know, recovery can take a long time for some and is more painful for some than others. It takes courage, patients and hard work. You'll make it!

There is no room for "should haves" around here. We've all tried to make the best choice of treatment with the information available to us at the time. Besides, without a Dups contraction, NA *never* entered into the picture for you. NA can only treats Dups contractions. You were not a candidate. If you had been, all any of us would have wanted is for you is to have all the facts.

Regarding your worries that more Dups may return, yes it may. But almost all of us who post hear live with that concern as well. (Sorry to Welcome you abroad, but you certainly *are* welcome). If Dups does return and create a contraction, NA may still be an option if *you* decide to pursue that approach. It could well be that NA could help you avoid further surgery. So just concentrate on your *current* recovery and don't even give a thought about recovering from a future surgery you may never need to have.

God Bless,

Randy

01/16/2006 23:56
marjorie 
01/16/2006 23:56
marjorie 
Thank you, thank you!!!

I was wondering what to say to Melissa and took a few hours out to think about it. Randy, you have said everything I had come up with. Sometimes you amaze me.
Melissa, just live your life, don't look back, deal with the future step by step and you will be fine. We are all coping with not knowing what the future holds, but since we have no say in the matter we just have to be brave and face it.
Marjorie

01/16/2006 23:57
jim h

not registered

01/16/2006 23:57
jim h

not registered

Thank you, thank you!!!

Melissa, for what it's worth, I've had 2 conventional surgeries for Duypuytren's, the first about 7 years ago and the second about 5 years ago. Recovery was long and slow but but the contractures have not returned, despite all the dire warnings you may read about surgery just making things worse. So in that sense they were successful. The number one piece of advice I'd give is to do 110% of the physical therapy exercises you're given.

01/16/2006 23:57
Melissa

not registered

01/16/2006 23:57
Melissa

not registered

Thank you, thank you!!!

Your replies mean so very much to me! I'm glad to have a place to come for support and understanding, and to learn about the latest research. I'll hang around. :) It's good to know that there are folks out there who "get" what I'm dealing with.

Melissa

02/19/2006 23:39
Evan

not registered

02/19/2006 23:39
Evan

not registered

words of support please

I'm a 26yr old having first discovered signs of major nodules developing in my right hand a year ago - 01/06

I have major nodules on the palm of my right hand under my middle and ring fingers and a large one that extends toward my wrist under my little finger.

I have recently discovered a new nodule below the ring finger of my left hand that seems to be growing ever rapidly.

As far as I can tell I don’t have any contracture yet? Does it develop into DC from the palm nodules? Should I consider immediate medical help while I have no signs of contracture?

I'm incredibly stressed about this as it seems there are very few people with this problem at my age...can anyone shed some light on how it develops from here

Thanks in advance to anyone who can help

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