peyronie-dupuytren-ledderhose in Washington State |
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01/05/2009 15:45
badchessnot registered
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01/05/2009 15:45
badchessnot registered
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peyronie-dupuytren-ledderhose in Washington State
I'm 46, and over the summer I developed peyronie's disease. While researching that on the internet I determined that I had both Dupuytren's Contracture and Ledderhose disease (on my right hand and right foot).
I'm going to a doctor later this week, but does anyone know if there is some widespread systemic switch that can be treated for all of these related problems?
Also, is there any good experimential treatments in the Seattle-Tacoma area?
So far my foot just has a couple of hard nodules on one of the tendens, and the little finger of my right hand is bent away from the rest of the fingers by about 30º (but not curled toward the palm).
At this point the Payronie's is the most debilitating, though I play a lot of tennis and worry about the effect this is having on my right hand.
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01/08/2009 16:28
fmerk
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01/08/2009 16:28
fmerk
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Re: peyronie-dupuytren-ledderhose in Washington State
In Seattle the closest practitioner I personally have experience with is Dr. Kline in Boise. http://www.dupuytrenscenter.com/
After an open fasciotomy in Seattle and a re-occurrence of the DC I decided to pursue the NA procedure. I've use him twice and am satisfied with the results. Catch an early flight to Boise, bus to the clinic and back to the airport. Fly home the same day.
He is very approachable. I've had a couple phone calls with him discussing my condition and concerns. He takes his time and answers your questions.
Don't know anything about the (new for me) physician up in Vancouver BC but following up on that might be an interesting option.
Fritz
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01/09/2009 06:13
Megan
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01/09/2009 06:13
Megan
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Re: peyronie-dupuytren-ledderhose in Washington State
Hi badchess,
I live in Seattle also and traveled to Boise to consult with Dr. Kline and had radiation at St. Luke's Mountain States Tumor Institute in Boise. So far as Seattle, I called Swedish's Radiation Oncology Department in April, spoke to a nurse about the possiblity of receiving radiation here in Seattle. I was told by the nurse that she hadn't heard of Dupuytren's and that they didn't treat it. However, I thought it would be worth my while to encourage them to offer radiation for Dupuytren's so I called today and spoke to the receptionist. She encouraged me to write to the head of radiation oncology, Dr. Todd Barrett. So, although they don't treat it currently, perhaps if they are approached by more than one person, they might become interested in it? I don't know anything about Dr. Barrett, however.
I noticed on Dr. Barrett's website that he is accepting new patients.
Megan L (Bellevue)
Edited 01/09/09 08:16
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01/09/2009 20:42
fmerk
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01/09/2009 20:42
fmerk
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Re: peyronie-dupuytren-ledderhose in Washington State
I'm in Group Health. I had the Regional Fasciectomy there in ~ 1996. It worked but the healing process was very unpleasant. Before the procedure I asked the surgeon about NA. He didn't think much of it. Of course the DC came back. I didn't want surgery again, nor did I much want the trek to Florida or France so I let the finger get a bit too bent before I found out about Dr. Kline. He suggest the radiation on my other hand the last trip. I'm trying to figure out how to get GH to do that. No one knows anything about this kind of treatment.
I was under the impression radiation needed several treatments like a week apart. How did you manage that? A one day trip to Boise is not a big deal. I am a lot more reluctant to do that once a week for 6 weeks or whatever it takes.
Fritz
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01/10/2009 02:08
Megan
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01/10/2009 02:08
Megan
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Re: peyronie-dupuytren-ledderhose in Washington State
Hi Fritz,
I had five days of radiation in Boise, and 6 weeks later I had another 5 days. The treatment only took about 30 seconds for each hand...I was only at St. Luke's each day for about 10 minutes total. I arrived in Boise on a Friday, had an appointment with Dr. Kuhn, and they made the molds for my hands that day. I started radiation treatment the following Monday.
However, Dr. Kuhn told me it was possible to have two treatments in a day, so long as they were scheduled 6 hours apart. That way, the treatments could be done in 2-1/2 days. I'd already taken the full weeks off work, though.
Megan
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01/11/2009 17:49
fmerk
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01/11/2009 17:49
fmerk
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Re: peyronie-dupuytren-ledderhose in Washington State
Mind telling us the medical cost? Assume hotels, etc. are extra. Fritz
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01/11/2009 18:11
Megan
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01/11/2009 18:11
Megan
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Re: peyronie-dupuytren-ledderhose in Washington State
Hi Fritz,
Well, the medical costs are truly expensive. My husband works at Microsoft and we have really great medical insurance, otherwise I wouldn't have been able to do this. I know how fortunate I am in this regard. Get ready....for the first round of doctor's appointments and radiation, my insurance company was billed $13,308. For the second round, my insurance was billed $4,472. I imagine the first round is more because they make the forms for your hand, etc. Everything was already in place when I went in for the second round. The insurance company did not pay the full amount for all these charges; it looks like they paid about 50% of what the hospital charged and the hospital accepted that. All very wierd how this "works" (or doesn't work) in the US.
Megan
Edited 01/11/09 20:13
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01/11/2009 18:44
fmerk
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01/11/2009 18:44
fmerk
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Re: peyronie-dupuytren-ledderhose in Washington State
Ouch!!!! So, I guess 1 hour to make forms and setup the procedure. After that 10"/treatment of which only a few minutes are actually treatment. That's outrageous, actually. The 2nd cost is more in line for proper cost for the entire treatment as far as I'm concerned.
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01/11/2009 19:48
Megan
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01/11/2009 19:48
Megan
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Re: peyronie-dupuytren-ledderhose in Washington State
Hi Fritz,
Yes..I know...the cost seems inexplicable. I can't imagine what the costs are for more complicated radiation procedures. Actually, they make a form for each hand to sit in, so that it stays in the same position, and then some sort of form is cast out of metal for the radiation to come through, so it strikes the part of the hand that the doctor has mapped out. Also, I had a lengthy consult with doctor at the onset of the first treatment round.
Megan
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