| Dupuytren's in Florida |
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05/25/2011 13:58
lauriw 
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05/25/2011 13:58
lauriw
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Re: Dupuytren's in Florida
Betty,
If you like the radiologist that is close to home and you feel that you will get good care I think you can't go wrong. I found a doctor in Des Moines to do my RT this year and it is his first. I think he is wonderful and feel that I could not have gotten better care. If he or she is a good doctor and does their research I think they are qualitifed to treat DD. We NEED to get this care mainstream in the US so that it will become the first line of attack. Going to Germany will not help to make RT for DD a standard of treatment. I have no problem with people going to see Dr. S if they have the time and money, but that does not help establish RT in the US. Having doctors treat here and getting as many good ones on board is what we need. If we continue, no insurance company will be able to challenge the treatment we need.
I have done a ton of research on DD and have never found any data that suggests you can't do surgery after RT.
Good luck!
LauriW
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05/25/2011 14:12
cindy850 
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05/25/2011 14:12
cindy850
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Re: Dupuytren's in Florida
I guess i should also tell Betty that i had my RT done by a doctor that was 20 minutes from my house and he had never did RT on anyone before me. I was his first. It did not bother me one bit because after all these doctors take care of cancer so they know what they are doing. He give me the treatment that was going to help my hands. It has now been 15 months and i'm so glad i found him. I just love my doctor.
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05/25/2011 16:19
BetNY 
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05/25/2011 16:19
BetNY
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Re: Dupuytren's in Florida
Lauriw and Cindy850:
Thank you very much for your words of encouragement. I feel the same way. My appointment is in 45 and I still home.... hehehe
Lauri, Wolfgang verified that I could do surgery, at a future date, if I would need to do it. I justed wanted to keep my options open; just in case....
I can not wait till we meet and see how he feels about doing it.....
Wish me luck, and will keep you guys posted.
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05/25/2011 17:27
flojo
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05/25/2011 17:27
flojo
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Re: Dupuytren's in Florida
Quote:
Having doctors treat here and getting as many good ones on board is what we need. If we continue, no insurance company will be able to challenge the treatment we need.
Very good point! Why didn't I think of it? It is definitely an uphill battle at this point.
I have not heard from Medicare on my appeal about them not covering RT for the radiologist. I called after they had my request for an extension of time and was told that that Medicare has 60 days to respond. I should hear in about 2 weeks.
Medicare paid for the actual radiation therapy but not the radiologist. Doesn't make sense. I'm using that as part of my case - paying for the actual radiation obviously shows that it is recognized by Medicare as standard of care and medically necessary and the radiologist has to diagnose, plan the radiation, order and follow the treatments, so the radiologist should be a benefit, too.
I now have the letters from the radiologist at Loma Linda UMC and the one from Scripps that I did not have to include with the request for extension of time. If I sent them now that my request for extension in in process, they would never catch up with the original paperwork. So, I just have to wait. I'm cautiously hopeful that they will approve it, but if not, I'll send the letters documenting RT as a medical necessary and standard of care. I'll also have a list of insurance companies that do pay, including Anthem Blue Cross, my own supplemental insurance that would pay if Anthem BC was my primary. Since Medicare is my primary, they don't cover anything not covered by Medicare.
We're all in this together. I feel like I'm at bat trying to get a hit. I hope I make it a grand slam.
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05/25/2011 19:50
BetNY
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05/25/2011 19:50
BetNY
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Re: Dupuytren's in Florida
Lauri you are so right about American Radiologist should be following the same protocol as they do in Germany. I had called two places last week, one returned my call thru a secretary saying that "The doctor said that was not for him, since it did not work" --that was my message on my machine..... He did not even take the time to read what all of us have been reading here..... My dad has Dupuytren for at least 35 years, and while talking to the Radiologistg today, he informed me that this was available back then; rather than doing his stupid surgery that still left him with 2 fingers that do not move..... I am glad that I have the internet and educate myself. He listened to his hand doctor and they told him, that is the only thing to do for him back then was the surgery............
Flojo, my BC/BS insurance coverage is paying for it.
Betty
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05/25/2011 20:48
flojo
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05/25/2011 20:48
flojo
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Re: Dupuytren's in Florida
Betty,
What state are you in? Apparently each state's BC plan makes a different determination about whether it is covered or not. I'm in California and Anthem Blue Cross told me that RT is a benefit to treat for Dupuytren's, but Medicare as my primary determines what is covered and Anthem BC picks up on only what Medicare covers.
As for the protocols, Dr. S is certainly respected. There are other protocols out there that are deemed as good or better. I've looked at some studies. In my life other than Dupuytren's, I'm too busy, but I will look at more studies when I find time.
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05/25/2011 23:21
flojo
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05/25/2011 23:21
flojo
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Re: Dupuytren's in Florida
Betty,
My Blue Cross also covers what Medicare covers. The problem is that Medicare is denying paying the radiologist fees so far, unless I can win the appeal. That amounted to about $1600 that was flat out denied. I'm trying my best for all of us on this appeal.
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05/26/2011 11:44
lori
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05/26/2011 11:44
lori
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Re: Dupuytren's in Florida
Betty,
I am in NC but BCBS Advantage paid for mine. I had a $2500.00 deductible and ended up paying about $250.00 I had to pay for an MRI separate because BCBS Advantage considers that to be diagnostic and my plan does not cover CT scans, MRI, etc., if it is to diagnosis. I find that odd since how can you treat without a tool to diagnosis. Anyway the MRI cost about $1200.00
Don't forget to take pictures of your hand prior to RT and then at several intervals afterwards (3 mos, 6 mos, etc.). I found it helpful to be able to actually see how the RT changed my hand. The pictures are in the forum from 2009-2010 here under my name. Being able to document the improvement was great. You think you will be able to remember but you quickly forget how it looked.
Lauri,
How goes it, now that you have had both hands done? Any idea as to how much you will actually have to pay? Any changes in your hands?
Lori
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05/26/2011 14:08
lauriw
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05/26/2011 14:08
lauriw
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Re: Dupuytren's in Florida
Hi, Lori, I've been thinking about you! I do my next set in late June. I tolerated the first set of radiaiton really well and love that I don't spend all of my time worrying and looking at my hands. I have noticed that my hands are softer, the largest cord seems pretty much unchanged, but I expected that. I have seen no progession and have had none of the creepy, achy feelings in either of my hands. I think the texture has changed a little, more glossy, but not really dry. They may be dry after the next set. I am thrilled to be with this treatment and love that I am not finding new little surprises every other week or so. How are you doing?
If anyone ever needs some help with insurance I have a letter from Blue Cross after my appeal that state RT for DD is a normal standard of care. Pretty good stuff! You can beat these guys, just need to push really hard. I'm always happy to share with anyone how I fought BCBS after they denied my claim.
After the first round I paid just over $1,000.00. as part of my deductable. It should be lower next time since we already have the casts made. The total cost for round one on both hands came close to about $9,500.00
LauriW
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