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NA in the UK
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08/06/2007 13:53
wach 

Administrator

08/06/2007 13:53
wach 

Administrator

Re: NA in the UK

Michael, you sound like one of those people (like me) where the healing process following surgery fosters growth of new nodules or even recurrence in the operated area. I don't think there is anything to do against it, except being somewhat reluctant to frequent surgery. But sometimes surgery is the only alternative.

Kenalog: the French usually inject some amount cortisone when preparing for NA. They may not have mentioned this but they usually do. I think the same applies to US and German doctors. Kenalog is a brand name for a specific cortisone.

Night splint: In Germany usually a night splint is recommended after NA and I believe Charles Eaton and Keith Denkler do that as well. Maybe it's the surgeons who consider splinting while the French, typically not surgeons, care less about it. Just a speculation. Wearing a splint during day and night for a longer period of time is usually not recommended because of the fear that joints might get stiff. Moving the hand during the day and wearing a splint at night sounds like a good compromise.

Ever thought about radiotherapy for your fresh nodules? There ought to be a hospital also in the UK which can do this. Usually research oriented hospitals which have low energy x-ray equipment are good candidates. There must be some around because some of the equipment actually comes from the UK. You need to inquire, they usually don't advertise this therapy for Dupuytren.

Wolfgang


08/06/2007 16:50
TrevB 
08/06/2007 16:50
TrevB 

Re: NA in the UK

Quote:



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




Thanks for that, interesting.

08/06/2007 16:59
marjorie 
08/06/2007 16:59
marjorie 
Re: NA in the UK

Hi Michael,
Thanks for your info. I see that Wolfgang has replied to it.
Marjorie

10/30/2007 17:34
TrevB 
10/30/2007 17:34
TrevB 

Re: NA in the UK

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

06/29/2008 17:11
marjorie 
06/29/2008 17:11
marjorie 
Re: NA in the UK

Michael,

It is now a year since you had NA with Mr Bainbridge. How are things with your right hand?

Marjorie

07/23/2008 13:43
Michael

not registered

07/23/2008 13:43
Michael

not registered

Re: NA in the UK

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

07/23/2008 16:26
marjorie 
07/23/2008 16:26
marjorie 
Re: NA in the UK

Hi Michael,

Thanks for replying. It is good for everyone to have reports of treatment whether good or bad.

It is such a shame that NA did not work for you. Perhaps it is due to you being young as your surgeon said.

I am pleased to report that the NA I had on my left hand is still good after almost two years.

My right hand is not the best but the biggest problem is the PIP joint on my little finger which does not respond to NA.
My local hospital has a surgeon who does several small cuts on the finger and then cuts the cord in each place. That does
not sound as drastic as full blown surgery so perhaps I will look into that when I need something doing.

Hope all goes well for you.

Marjorie

07/24/2008 05:45
Randy_H 
07/24/2008 05:45
Randy_H 

The Down-Side of all Treatments

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.

07/24/2008 16:31
TrevB 
07/24/2008 16:31
TrevB 

The Down-Side of all Treatments

You forgot Radiotherapy. I'm still toying with the idea of this and hope I can make a decision before it's too late for me which is perhaps not too far away, although I've full movement at the moment. I just can't get my head round the idea that 30Gy is classed as low dose? If you do searches it seems that 30Gy is high? The prospect of 10 mins with an NHS consultant before possibly agreeing to something that scary is also difficult to take in. Bearing in mind your post and then adding my concerns it's lose lose

For anyone who's had radiotherapy for Dups, how was the treatment explained to you? How were the risks explained? How are you now & how long has it been since your treatment?

Cambidgeshire, UK.

Edited at 07/25/08 09:33

07/25/2008 15:24
Issleib 
07/25/2008 15:24
Issleib 
Re: NA in the UK

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

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