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Comparing NA in Paris and UK was interesting. Mr. Bainbridge is a strong advocate of splinting, both during the day and night, after the operation. In Paris, there was no mention of splinting at all. I also received some Kenalog, which didn't happen in Paris. Again, we'll have to see what happens there.

So having been through all of that, as a resident of the UK, I'm still of the opinion that I would rather have several bouts of NA than even one open fasicectomy. It also felt much more reassuring using a UK practioner than having to go to Paris.

Hope that answers some of your questions.

Michael

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Thanks for that, interesting.

Good to see the latest news item showing Dr Belcher as an addition to the list of doctors and clinics performing NA (PNF) in the UK

I was pleased to see in the presentation at http://www.pncl.co.uk/~belcher/operations/Fasciotomy.pdf the mention of disabled as an indicaor for NA. I only have use of my affected hand and am not sure that I could deal with one or multiple surgeries leaving me helpless Hopefully I'll fit if need be

Hi Marjorie,

It's fair to say I don't check this forum too often, but here is an update for you, if you are still interested.

The NA in my right hand was fairly successful at the time, but as I think I said, I didn't want to get my hopes up regarding recurrence. Sure enough, my right pinkie and ring finger are very much on the move.

Since I last had NA in my right hand, my left hand got a lot worse too. In January of 2008 I had a fasciectomy and skin graft on my left hand. This was recommended by Mr. Bainbridge, and also another plastic surgeon in Edinburgh (where I live). It's not pretty, but 6 months on it seems pretty stable. 6 months after NA on both hands I could "feel" the recurrence (hot, itchiness etc.). My left hand has not yet exhibited these symptoms.

As a result of that, I'm not planning any more NA for my right hand, after the one round I have had already. Particularly in my little finger, the full fasciectomy and skin graft seems the best solution, and I plan to have my right hand done in the winter.

Hope you are having success with whatever treatments you choose. Certainly in my case, NA is no magic bullet. My surgeon in Edinburgh told me that in younger cases, such as mine, the best outcome is through a skin graft. The repeated NA I had in my left hand made her job a whole lot harder - there was only so much she could do to straighten my finger due to the repeated scarring that was present under the skin.

regards,
Michael

Apart from straightening fingers, another goal of standard Open Surgery is to remove all diseased Dup's tissue in the hand. As with a cancer operation, it is important to get it all. This is done to lower the rate of recurrence which, let's face it, *is* the problem with the treatment of this disease. Full Open Surgery has a recurrence rate of about 50% in 5 years. As much as 90% in 10 years. That's poor.

NA removes no tissue whatsoever. Therefore higher rates of recurrence are to be expected, especially among those with more aggressive disease. For them NA is not indicated and is of little value. However, for the majority of new patients the French have found that repeated NA is all most new patients will ever need. It is on *that* expectation that millions are being spent on FDA approval of Collegenase. It too removes no tissue and it's statistical rate of recurrence should therefore be similar to NA. No clinical data yet exists. Too new. However, if something far less invasive than full OS were not desperately needed, why would drug companies risk millions on a treatment that surgeons would ignore? (Why most still ignore NA is another topic altogether....don't get me started. :-)

This disease is simply hard treat and those with the most aggressive cases have the hardest time with that cold hard fact. At present skin grafting is the best fire break. NA, Collegenase and even full OS aren't enough.

In spite of random reports of individually helpful nutritional and/or applied medication, no non-surgical treatment has been found to work for a majority of people.

I'm a physician myself so I was probably treated differently than most. I found out about radiation from doing a search of Dupuytren's using a couple subscription only medical search engins. I consulted by e-mail with a friend who is a highly respected and widly published radiation oncologist. He assured me that the literature was valid. He gave me the name of a physician near me that he thought might be open to it. I wrote him using my friend as a referal.

Because I was a Physician I was given very technical information on the specific machine that was used most of which I undrestood at the time but not well enough to repeat back.

My hands got a little red a week or two after I was done. and the skin got quite dry. But I'm really hard on my hands washing after every patient, every diaper change, and washing every developmental testing toy that goes in a mouth or on the floor. It's been two years and the dry skin has improved remakably.

It's been 18 months for my feet. They said my feet would be more sensitive to the radiation than my hands. Actually they were much less dry, probably because I wasn't washing them all the time. I had one red sore spot on each foot for a few days. I have a new nodule on one foot outside the radiation area.

I had very aggressive disease going from a couple nodules in one palm to both hands, both feet, knuckle pads, a cord forming to my right 5th pip, and nodules on my knee caps in the length of time it took to get a diagnosis, do my research, and make it to treatment, maybe 18 to 24 months.

I may yet need more treatment in the future but I've had 2 years so far of being able to put preasure on my palms without pain again and I can stand or walk as long I as I want to. The cord is gone and has shown no eveidence of coming back. I have small hands to start with and a ny contracture of my fifth finger would make doing a pediatric hip exam nearly impossible.

Along the way I meet two very nice radiation oncolgists, about 4 residents. two were "mine" but they brought others along to show off their "interesting " patient , a radiation physicist, and a group of lovely techs.


I hope my story helps

Colleen