Hi, I'm a new member from Florida. My 52yr old husband was diagosed with early stages of Dupuytren in Jan. Although the nodule in his hand has grown bigger and multiplied it is not yet corded. The hand specialist said to wait until it contracts and then he'd preform surgury. I printed several articles from this site about radiation therapy and my primary presented this info to the insurance company but, they say "it is not medically necessary as according to guidelines diagnosis does not support medical necessity for use of external beam radiation therapy." My husband is a watchmaker and relies on his hands to make a living. I'm filing a grievance with the insurance co. but would like to know if anyone else has been sucessful. If I fail with the insurance co. is there a ball park figure for out-of-pocket payment for treatment for 1 hand? Looking forward to advice.

Lori, many thanks for your information...you had many good points. I have an HMO insurance plan and the called today to let me know that until they review my appeal they won't send me any denial documentation.

okey dokey, Diana here - here's what happened to me.

I have an HMO.

April - diagnosed (after one mis diagnose) with Dupuytren's. Began researching the heck out of this disease and stated to the Orthopedist and then my Primary Care doctor that I was interested in radiation. (Neither had heard of NA or radiation for this - only surgery after contraction). My primary care doctor said she would refer me to the hand specialist (the plastic surgeon who also does hands) and a radiation oncologist but she said that she thought that approval with the radiation oncologist was iffy. She was right.

May - Got approval to hand surgeon apt. Was DENIED an appointment to radiation oncology (although my doctor kind of dropped the ball a bit by referring me to a local, but out of network, doctor). Made apt. with hand surgeon - no availability till end of June. Kept researching Dupuytren's. Began gathering data - both from this site and from others backing up radiation. Also during this time, I contacted the medical liason at my husband's work and was given good information on the process to get approval/appeal etc. Very helpful and eased my stress.

Also realized that my medical group had merged with Palo Alto and San Jose (I'm in Santa Cruz). I found out that I could call other hand specialists in the enlarged network and was able to get in to see a hand specialist on June 1. I had about 50-70 pages of documentation by then, put it in a binder and met with the hand surgeon. He didn't tell me anything I didn't know, in fact that he said I probably knew more about this disease than 90% of the doctors out there. (Bummer). I showed him my binder of information and he said he would like to keep it and that he was interested in the radiation, thought it could have some merit at the beginning stages while it is growing. Part 2 to follow:

Part 3

So my recommendations are that you find the HR person from work, if applicable, and explain your situation, gather up data and put it into an easy to read format - I had tabs etc. - sections on studies, clinics, "how to's", etc. You could also mention to them that Blue Cross and Medicare cover radiation for Dupuytren's. I think that helped. The HR person told me that just because many doctors don't do this procedure, it doesn't mean that it won't be approved. He was going to help me with my appeal but it never got to that stage. I also was doing Google searches on how to appeal a medical denial and again, that binder I put together would have really helped I believe.

It took around 3 months for all of this to happen and I kind of made it my part-time job. (I also called every US doctor/clinic on this website to try to get pricing and more info). We luckily had the money saved (as part of our charitable giving) so we were fully prepared for me to go to Germany or San Diego depending on cost. I do know that Germany is WAY cheaper than the US - I believe it was 800 Euros for the radiation. Of course you have to fly there, stay, eat, and get around. Dr. Tripuraneni's office will give you a quote and it will be smaller if you pay it out of pocket - I do not know what that price is though. They were extremely generous in the discount for my out of pocket consultation however.

Good luck to you and send me a private email if you would like me to mail you a copy of my binder. I have an extra one.

Diana