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Options?
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07/22/2006 23:02
Trevor

not registered

07/22/2006 23:02
Trevor

not registered

Options?

Hi All

New to the forum and living in the UK where the options on treatment seem to be limited to potentially unpleasant surgery only?

I have 2 nodules in the palm of my right hand in line with my ring finger and two smaller bands on my other middle finger. At the moment my fingers are all straight and I'm not experiencing any real problems.

My concern is because I've had left side paralysis through head injury, and although I have recoverd well, my left hand has very very limited function and I rely on my right hand entirely. I don't want to get to the point where I need drastic measures that would mean that I basically am not able to do anything for myself!

If things do start to get worse, should I seek early treatment and possibly look outside the UK? Any views would be welcome.

07/23/2006 23:01
Wolfgang

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07/23/2006 23:01
Wolfgang

not registered

what to do?

Trevor,

unfortunately it seems that there are not too many alternative treatments available within the UK. Though we know of a case where someone has been treated at a NHS hospital with NA this is not a standard and the doctor refused that his name is published, although the NA had excellent results.

English patients often go to Paris for NA (see also www.duputyren.org) and some also to Germany for radiation therapy (see also www.dupuytren-online.info).

As you have no contraction yet NA would probably not help much. Radiation therapy might be the right means to slow or possibly stop progression of your Dupuytren in your early stage but umtimatively a MD has to decide. You would need to travel for at least 2 weeks to Germany for treatment, would that be an option for you at all?

All the best to you

Wolfgang

07/23/2006 23:13
rob

not registered

07/23/2006 23:13
rob

not registered

when to treat

Trever,

If I were you I'd call the office of a NA practicing
doctor and ask about how long it will be between the time you request an NA treatment and the time that they can accomodate you.If it's lesss than ONE month or a little longer I'd just watch it and if you notice you can not lay hand flat on table and hand is getting bowed by more than 1-2mm per week then I'd schdule and seek cheapest air fare.They say that normally after NA you can use your hand normally again in 2days.My hand is bowed by 25mm and can still do all my tasks with it. -rob

07/23/2006 23:13
Trevor

not registered

07/23/2006 23:13
Trevor

not registered

Thanks

Thanks for that Wolfgang and Rob.

Because of my circumstances what I really want to avoid if/when the time comes is open surgery which takes my hand out of use for a long time or makes things worse. As I said, I basically only have use of my right hand and reading about the possible progression of this disease and outcomes of surgery has shaken me a little.

I've read a little about patients waiting too long so that NA is not an option, if it was before? I want to avoid that situation if at all possible. I don't have a passport & have not left the UK but would do so if necessary if I couldn't get NA here.

Unfortunately I'm not under the care of a hand surgeon. The consultant I visited said that if I was concerned in the future then I should just return to my General Practitioner (GP - local doctor) who would refer me back to him. So I'm very much on my own in trying make the right decisions on something I know very little about?

Once again, thanks for your input.

07/23/2006 23:29
Marjorie

not registered

07/23/2006 23:29
Marjorie

not registered

measurement device

Hi Trevor,
There is nothing wrong with being prepared. Get all the facts you need and then you will be able to take action when the time is right.
Do visit www.handcenter.org There you will discover when to have NA, there are pics which show you how to measure the contracture when it starts.
The following web page gives you a list of all the practitioners of NA http://perso.wanadoo.fr/f.badois-dupuytren/html/liste.html
Most of the European practitioners will give you an appointment fairly quickly, four to six weeks is usual but I have known less waiting time.
If you live in the south of England, Eurostar to Lille or Paris is easy. Anywhere else I think flying is better. I live in the NW so getting to Eurostar would take longer than flying to Paris does.
I have had NA so can tell you that the only pain is from the injection to deaden the skin, ouch, but it only lasts for 20 seconds. Dealing with one finger takes about 20 minutes. You then wear a piece of elastic strapping for two days and keep the hand dry. The hand can be used at once for anything but heavy lifting which should be avoided for a couple of weeks.
Following the procedure your hand will feel numb until the anaesthetic wears off and you may have a few twinges for a couple of days. You are advised to take Paracetamol if you need them but I did not. I was eating a meal with a knife and fork within half an hour of the NA.
Will the Dup's return? Yes, it will and it also returns after surgery. When? well that totally depends on the individual. Some people need treatment every 6 months and some go for years without problems. My finger was left too long before my first NA so it looks as though I will have to have treatment once a year. I will wait and see how long I last after my second NA in September.
Have a look at the interview with Dr Charles Eaton who trained in Paris and now does NA in the USA.
http://www.medscape.com/viewarticle/531578
Hope this helps,
Marjorie

07/23/2006 23:02
Trevor

not registered

07/23/2006 23:02
Trevor

not registered

measurement device

Very helpful thanks Marjorie. I'm only an hour by train from Kings Cross so Eurostar would be the best option for me when the time comes. All I've got do now is try to explain to my GP at some point that there is perhaps a better option than the lot of scarring the consultant promised, despite the fact I said that my GP and I were trying to avoid drastic action!

07/23/2006 23:47
Marjorie

not registered

07/23/2006 23:47
Marjorie

not registered

measurement device

Trevor,
Perhaps it would be a good idea to take some written facts to your GP. You could cut and paste onto 'word' the interview with Dr Eaton and anything else you feel would be relevent.
Marjorie

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