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Diagnosed today......
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06/16/2010 23:51
Bourne70 
06/16/2010 23:51
Bourne70 
Diagnosed today......

Hi everybody,

I'm Michael in Jacksonville, FL and today, I confirmed my self-diagnosis with a real live hand surgeon. Since I noticed the nodule and puckering skin on my left hand (in March), I've been scouring the interweb and stumbled upon this handy site.

In short, after reviewing all available info thus far, I've concluded that I'm (almost) convinced that, given the early catch and stage of my condition, that RT would be worth a shot.

I would really love to find someone in the U.S. Firstly, because of the cost of having to travel (overseas), but mostly because of $$$$ (or rather, lack of). Although, because of having a relative in the airline industry, if I had to I COULD.

That said, everyone here has been a tremendous help. But I could use some further detailed info regard COSTS of the procedure in the U.S. In reading here, I''ve seen costs ranging from a few thousand to 20 thousand and up (at the Oklahoma City clinic listed, if I'm not mistaken) As I stated earlier, although I would rather not, given the relative cheap cost of RT treatment in Germany versus here, I would travel if need be. But I would love to do it here.

I really need COST info.......

Any thoughts?
Thank you in advance for any info you have to offer......

BTW, I'm aware of the clinics listing in the side bar, but I've discovered that you all have ALOT of fresh info not listed there.

06/17/2010 01:11
flojo 
06/17/2010 01:11
flojo 
Re: Diagnosed today......

Where in the U.S. do you live?

I'll try to find the cost of my RT at Scripps/LaJolla and repost it. Don't remember, but they accepted whatever Medicare's coverage was.

06/17/2010 01:18
flojo 
06/17/2010 01:18
flojo 
Re: Diagnosed today......

Found my posting of 8/29/09 about the cost of my RT done in July 2009. It is shown below.
This will at least give you a reference point. Dr. T won't do RT if he doesn't think it is the right timing, i.e. active Dupuytren's.


flojo Cost of RT at Scripps

Just received Medicare Summary Notice for my RT. Note: No co-pay if charges within Medicare approved charges.

"Set radiation therapy field" - $836.80**
"Radiation physics consult" - 2 x $562.10**
"Radiation treatment delivery" - 10 x $482.78**
** Amount charged by Scripps/Dr. Trapuraneni was within Medicare approved rates.

"1 Ct scan for therapy guide" - Amount charged - $99.00, Medicare approved amt. - $42.73

Other charges noted as "Information provided does not support this service or item" for the initial SIMS planning appointment done 3 weeks prior to beginning actual radiation treatment (itemized as therapy planning, set radiation therapy field, radiation treatment aid professional charge and Special teletx port plan professional charge) totaled $1,032 Note: The "Ct scan for therapy guide" listed above as paid by Medicare was done at the SIMS planning. It is reasonable to me that at least some of the unapproved charges can be documented, but I don't know if Scripps will provide documentation for these charges or not.

Scripps charges, I assume, were aligned with Medicare coverage, but I don't know. I hope knowing Medicare Approved amounts will help others in planning their treatment. Remember that my dosage was 1.8Gy for each of the 10 sessions of electron radiation therapy. I would think that a higher dosage would cost more.

* Quote

06/17/2010 10:37
Bourne70 
06/17/2010 10:37
Bourne70 
Re: Diagnosed today......

Thank you for your quick responses. I guess that I should provide a bit more info.

I live in Jacksonville, FL. I'm 39, which worries me a bit, since, DC seems to be more aggressive the earlier it strikes. Granted, as stated here, some people develop nodules and then the disease either goes it a remission for years and/or never progresses. It seems likely that won't be me. However, in spite of that, I think it's worth it to try for RT as it is in the early beginnings.

Regarding the tell-tell signs of growth activity, unlike others here I hav'nt noticed any itching or pain. Just some occasional discomfort, especially when working with the hand, and sometimes some fleeting quirmy feelings, but nothing else. No shooting pain or trouble sleeping. This is important to me, as I am aware that confirmed "active growth" is needed for RT to be effective. Maybe it's just too early. But the nodules are clearly there.

Regarding $$ , I presently have an HSA coupled with a high-deductable through BCBS of Florida. So basically, I'm "self-pay" up to $5000 bucks and I'm not even sure if they would cover this anyway.

It's encouraging that some doctors here in the U.S. are following the German lead in RT. However, I'm getting the feeling that my out of pocket expense here would easily exceed $5000, which leads me to the option of a Germany visit, which woud probably top out at $700 or so for airfare, $200 for cheap lodging and (just guessing) about $1200 or so for the treatment. This is also contingent on my condition being active and beng able to be treated with the longer one-time protocol, to save me a second trip. Although, with further thought, he would probably want a follow-up at some future time. So, with extras like a connecting train ride to the treatment site from Frankfurt and some extras, I estimate a total cost of around $2500 to $3000 U.S. Dollars.

If I can find a U.S. doctor that could be at least less than $5000, I could probably do it here, and without all the hassle of traveling.


Here's hoping.

06/17/2010 12:51
David26

not registered

06/17/2010 12:51
David26

not registered

Re: Diagnosed today......

I just finished RT in Birmingham, AL at UAB. The radiation oncologist was Dr. Ruby Meredith http://www.uab.edu/radonc/ruby-profile.php
Mine was the first DD they've treated but Dr. Meredith did consult with Seegenschmiedt and Dr. T at Scripps. She also spent a lot of time researching the disease. I had 2.0Gy for 2 weeks.

They do a fine job at UAB, very professional. What you do is first run the bills through your health plan and they reduce them to covered and non-covered charges. You are only responsible for the covered charges even though in your case your health plan may not pay any of it. My carrier was BC/BS of Illinois with a $1,000 deductible. The total billed amount was approx $12,000 but the covered part that got paid about $4,000.

I haven't posted anything about my results yet because I am still evaluating things. I have very aggressive DD which started about 2 1/2 months ago and hit both hands and both feet at once. The RT was some help for sure but things are still going on. I will post an update sometime later when I can give a fair summary.

Edited 06/19/10 22:17

06/17/2010 15:27
paradise 
06/17/2010 15:27
paradise 
Re: Diagnosed today......

Aloha

Would be interested in knowing how your RT fares. I just recently went through a first round in OKC, OK and the jury is still out. I am noticing the cord in my left foot softening - not the tumor. But, with the cord easing up, the tumor is recessing back into the high arch that I have. I hate to think of you all that have flatter feet.......as can only imagine just how painful the tumors are to the touch of shoes and to the floor. I live in flip flops, so far - pretty good.

Like yourself, both the LD and DD onset was within three weeks or so and in both feet and hands. Dr. Herman in OKC would not radiate my wrists or thumbs even though I kept telling him that DD was active in these areas. The result is that I now have cords developing there. In my follow-up appointment last week? He appeared hurried and non interested in my results. I pressed him for what my next step was and he replied, "There is a doctor here in OKC that works with a needle to break down the collagen of the cords."

Soooo.........is this the NA therapy that Dr. Eaton in Florida also performs?

I have this to say.

Thank goodness for this forum. Too, along with you all - I am doing my own research in monitoring this disease. And thirdly? What has happened to health care in America?

Have a wonderful day - all of you. And Pat? Hope to hear how you are coming along after RT. Give me a shout?

06/17/2010 16:35
callie 
06/17/2010 16:35
callie 
Re: Diagnosed today......

Paradise,

Your comment caught my attention, You said, "I live in flip flops". Flip flops were the worst thing I could wear on my feet. As soon as I stopped wearing flip flops or any thing like them my feet immediately improved (this was about ten years ago). The nodules receded and I no longer am aware that I have any problems in my feet. It was a real relief. I have concluded (at least for me) that proper shoes are a huge factor in the progression of the disease.

06/17/2010 18:57
maxine 
06/17/2010 18:57
maxine 
Re: Diagnosed today......

callie:
Paradise,

Your comment caught my attention, You said, "I live in flip flops". Flip flops were the worst thing I could wear on my feet. As soon as I stopped wearing flip flops or any thing like them my feet immediately improved (this was about ten years ago). The nodules receded and I no longer am aware that I have any problems in my feet. It was a real relief. I have concluded (at least for me) that proper shoes are a huge factor in the progression of the disease.

HI. This is to address the Jacksonville resident who is considering the radiation therapy. I too live in Florida near Tampa and the radiologist who has done my first round is Dr. Lawrence Hochman. Phone is 727-842-8411. You would want to talk with Trish, his nurse, who has been very helpful. They would work through your insurance and code it so that the insurance would kick in. Then you would only pay a co-pay for each treatment as for a specialist. At least that is what is happening here. They have been great on working on this here. I posted my first reactions which are some relief of the "pulling:" although the nodules are still quite visible. Will give updates as I experience them. Keep getting as much info as you can. The RA is definitely the best for early stages with nodules.

06/17/2010 20:07
cindy850 
06/17/2010 20:07
cindy850 
Re: Diagnosed today......

My thoughts on all of this is your doctors charged way to much unless ins. is picking up tab. My bill for 10 days of radiation before turned into ins. was $4,852 and after ins kicked in and reduced amounts my bill that i was responsibility for was $1,851 and that is because i have a deduct. Why are these doctor charging you so much? If anyone needs info on my doctor and where he is just let me know. I have put this info on here loads of times but would be glad to do it again. I will check my amounts again to make sure and if this is wrong i will correct it. Take care

Edited 06/18/10 04:09

06/17/2010 20:46
Bourne70 
06/17/2010 20:46
Bourne70 
Re: Diagnosed today......

Thank you all for the info.

I agree that there seems to be a BIG range of cost here in the U.S. Without getting into politics, I really wish doctors and hospitals would print pricing schedules of procedures and medications so that WE the patients could price compare. It would really help the U.S. health care system tremendously.


Maxine, I will contact the doctor in Tampa. Would you mind giving me a general idea of how expensive he is?

Cindy850, I will search your posts. The costs you described sounds reasonable. In case I miss it, would you mind stating your location and the doctor involved?



Thanx again.

Edited 06/17/10 23:49

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high-deductable   therapy   Radiotherapy   self-diagnosis   progression   ruby-profile   disease   Medicare   Diagnosed   charges   immediately   Seegenschmiedt   Scripps   responsibility   treatment   documentation   radiation   nodules   Jacksonville   professional