Dupuytren's Update

[watervole]

Went to the doctor to discuss scan results. I want radiation therapy - the Dupuytren's web site makes it clear that this is the best option for the early stages of the disease (not 100% successful, but it can often stop the disease in its tracks thus avoiding the need for later surgery).

Comments

[jophan]

Googling Swedish medical websites, I can't even find radiation as a suggested therapy. They unanimosuly state that operating in a late stage is the only really efficient treatment.

So coming here for treatment doesn't seem to be an option.

[watervole]

Sounds like they haven't even caught up with Needle Aponeurotomy - which is a popular alternative to surgery in the USA - radiation seems to be used in certain parts of Europe and Canada.

[linda_joyce]

I've had a google myself and come up with nothing that says radiation is available for Dupuytren's but West Hertfordshire Hospitals are shown to have carried out some research on the treatment so it is know here. Perhaps they could give your doctor further information even if they might not speak to you.

[kalypso_v]

Bill's English. He said "They tried radiotherapy on mine, on one occasion immediately after therapy" which I took to mean it was done here. But as I said it didn't work on him, and he had to have it operated on.

[watervole]

The phrase 'after therapy' suggests that he'd tried other things first, which means he may have already been in the later stages of the disease where radiotherapy is less effective.

[watervole]

Could you ask him where the radiotherapy was done? I can't find any references to places in the UK that do it.

[the_magician]

This thread from an Oxford based musician says it isn't/wasn't available in the UK (read down to 11/5/2006 (US format dates))
http://www.biospecifics.com/forum/readThread.asp?forumID=1&threadID=5246

This site seems to have more info on German and other places that do radiation
http://www.dupuytren-online.info/radiation_therapy.html

The first site mentioned has a UK musician saying the surgery is not suitable for musicians :-(

[watervole]

It looks like Essen is one possible place to go. I also notice that the price cited there is not totally out of my reach... Though I'd have to add travel and accomodation which would push it up a lot.

I don't want to lose my ability to play music. I want to be able to continue to type with all my fingers. I also want to be able to push myself out of a chair without pain. I want to be able to grip the bannister on the stairs without flinching.

30 degree loss of movement would wreck my ability to play an instrument.

I'd imagine that surgery leaves scar tissue and that's the problem for musicians.

[the_magician]

The acupuncture/needle therapy sounds like an interesting halfway house that might also be worth keeping in mind for the future.

Travel to Essen can be quite inexpensive (though you'd want to avoid the flying due to climate change, personally I'd weigh up the costs, and then see what I could do with the money saved on the flight to fund political action or similar, but that's me).

I've a fair few friends in Germany (due to filk) so if it was accommodation that was the limiting factor, we could see what we could find ...

[watervole]

I don't think acupuncture is much use overall. There's no mention of it as an evaluated treatment on the main site and I suspect it mainly acts to control the pain.

NA (needle thingy) is a viable treatment, but only when the disease is more advanced. It does not prevent recurrance at all, as it only cuts through the tissue rather then removing it. However, it's a lot less invasive than surgery.

[adelheid]

If it was me, I'd go for surgery. I've seen it, I've seen the results, I've seen people happy with the results. Having said that, it's not my decision to make. If I run into one of the hand surgeons tomorrow, I'll ask them about radiation and let you know, though.

[watervole]

Please ask the hand guys about radiation - I'd love to know what they say.

The thing with surgery is that it's not generally done until you reach a contraction of around 30 degrees - that's a lot of movement to be without for several years. (imagine playing an instrument with that degree of contraction - you'd be unable to lift the finger to clear the note). And surgery is not always a permanent cure - it will often need repeating years later when the contraction develops again.

I doubt that I'd be considered for surgery for years yet - my condition is in the very early stages. It still causes pain though. (and early surgery would probably not be a good idea in any case.)

[adelheid]

I spoke to the hand fellow today and he hasn't heard of radiation being used to treat Dupytren's - in fact, as radiotherapy is well known for causing contractures elsewhere in the body, he couldn't work out exactly how it would work. Sorry; I know this is probably not what you want to hear. It's definitely worth pursuing a referral though, and pointing out to the hand clinic just how important it is for you to be able to fully extend your fingers - if they know you're motivated and informed they're often in a better position to discuss alternatives/risks and benefits of early surgery.

[watervole]

If he's interested, ask him to look at http://www.dupuytren-online.info/radiation_therapy.html

The therapy has been around long enough to have 10 year follow-ups done on it and appears to be widely used in Germany and Austria (and possibly the Czech Republic) but not much in the English-speaking world. The language barrier seems to have prevented it spreading.

It appears to use low repeated doses and they don't penetrate very deeply, but I don't know why it works. It seems to soften the nodes and prevent further growth.

There are links from that page to studies done at Harvard and elsewhere.

The most interesting article is the translated section at the bottom of this page http://www.springerlink.com/content/0nck81kvnt6dx5qy/