Good work, looks like you've got quite good coverage there.

Nothing seems to be missing from my knowledge, but I'll think about it. I am sure this will be very useful for lot of Dupuytren's patients.

Hi Al,

Great that you continue to provide excellent resources for patients! I know your efforts will be incredibly useful for many people.

I've been thinking that I'd like to do something proactive as well. I would like to put together a solid package of material that I can give to my physicians and local radiologists to spread the word. Keep thinking that if all of us send out just a few of these information packets to our area doctors, that maybe we can facilitate the availability of RT in more areas of the US. Would love some guidance and what should be included.

Amy

Morning Callie,

I follow the forum closely and know you have had an awful time dealing with your insurance company. I think it is reprehensible that they won't cover your RT. I feel extremely fortunate that I had the opposite experience. My insurance company received the pre-certification request and approved my radiation within hours. It is ridiculous that one company calls the treatment experimental and another finds it the appropriate course of action.

I live in an area between New York City and Yale Hospital. Some of the top doctors are within an hour from my home. Of the three hand surgeons I saw before I decided upon RT, two had NEVER heard of radiation therapy for Dupuytren's. My primary care physician NEVER heard of RT either. My mother's hand surgeon NEVER heard of it RT for DC and wants more information to share with a radiologist colleague. I do think that if more and more doctors become educated, there has to be some positive impact. The more doctors that do RT, the more acceptable a treatment it becomes in the US, and the more likely that the insurance companies will ALL consider radiation totally and completely NON experimental.

This is just my opinion, of course. I would like to see everyone here in the states having the right to choose the best treatment for them without the financial constraints that are now imposed by insurers. Just want to do my tiny part to help. I've been emailing morning news show doctors, talking to family friend's who are in the medical field, and trying to find any way I can to help spread the word. Perhaps I'm wasting my time, but for the slim chance that I'm not, I am willing to put in the effort.

Best regards,
Amy

spanishbuddha:

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alcook101:

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Hi

I've put together a flow chart of decision routes for dupuytrens, including the main options listed on this website.

http://www.pushpullsigns.com/images/Dupu...tmentRoutes.jpg

Any comments and potential additions / changes welcome. The idea of this is to give a potential patient a quick picture overview of the various options.

Al

Interesting and a good start. At the moment it's too simplistic I think.

For example, can you revise it to accommodate things like:

Early stage options should include do nothing but wait and monitor progress. This might affect the right most path of the chart, and I'd like to see a path just before severe contracture (not deformation) to surgery.

Radiotherapy is only effective on 'active' disease. Not just early stages.

Radiotherapy can also be applied at later stages, after correction of contracture via PNF, Xiapex, Surgery.

The three treatments for later stages that you show are primarily to reduce contracture.

Radiotherapy can be repeated, under specific conditions (perhaps leave that out for now)

If you do make changes I would also change the inputs from the family and trauma to something like symptoms of strange lump or pit in palm or lump on fingers.

The GP diagnosis point is OK but I'd like to see a hand specialist included as well.

Hope this helps? But I suspect another iteration or two might be needed. It's getting late!

Metzie:

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I clicked on your link, however, the diagram was so small I couldn't read anything it said. Is there some way to enlarge it, or am I not doing something right?