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06/30/2012 05:03
Lori-T 
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06/30/2012 05:03
Lori-T
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Re: NA IN SEATTLE - NOT
This was an old post, but I live in Seattle and will be having RT at Virginia Mason. My doctor is Dr. Kline (I saw him in Portland Oregon) and his office does the referral.
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06/30/2012 14:13
fmerk
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06/30/2012 14:13
fmerk
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Re: NA IN SEATTLE - NOT
It IS and old thread but I did not find anything more recent pertaining to Seattle plus Dr. Jerry Huang. For local people interested I wanted to describe my experience. I've diagnosed and referred 2 people on my own in the last couple months. The ignorance in both the medical and lay community about this disease is kind of appalling.
Things are starting to change it appears. When I had Dr. Kline do my last NA he was the closest source on the West Coast.
No one local did RT. Closest was Boise. I tried to get 2 different orthopedists and 2 primary care physicians to consider it-none would. I had a pile of documentation. Seems they just won't accept that from a patient.
Who are you seeing for RT?
Edited 06/30/12 17:18
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07/31/2012 02:28
Lori-T
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07/31/2012 02:28
Lori-T
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Re: NA IN SEATTLE - NOT
Hi,
Sorry I didn't get back to you sooner. It's been a busy summer.
I am seeing Dr. Guobin Song (Radiation Oncology) Virginia Mason Hospital in Seattle, WA. Radiology is located in the basement of the Buck Pavillion, with parking available across the street on 9th. Dr. Kline met with me in Portland, OR and did the referral for my area (I live on the Eastside). Let Dr. Kline know that you need to be treated in Seattle and I'm sure he'll set it up.
Good Luck to you,
Lori
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07/31/2012 14:51
fmerk
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07/31/2012 14:51
fmerk
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Re: NA IN SEATTLE - NOT
Thank you for that info.
Just has NA on my R palm by Dr. Huang a couple weeks ago. That went well for the most part, at least the procedure was quick and simple. After 3x on my L pinky I was surprised at how sore my R hand was. It also feels like it has crap in the palm, but I guess it does. Sure wish the Xiaflex wasn't $3200/injection!
Fritz
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07/31/2012 18:19
flojo 
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07/31/2012 18:19
flojo
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Re: NA IN SEATTLE - NOT
Fritz,
I got a big laugh out of your post. I think that is a good description of what we have in our palms - crap!
I had NA first, then RT, then NA again 2 1/2 years later. RT stopped more nodules from forming. Cords were still in my palm and after my second NA a year ago, I got a night splint. I highly recommend it. I'm positive it is helping keep my Dupuytren's at bay. My hand does not feel tight as it did right after NA. It just make sense to me that wearing that splint 6 or so hours works against what Dupuytren's is trying to do. I still expect to need NA ongoing but think the splint will push the time out a year or more before I need the next one.
Even if it didn't actually help, I'd want to wear it anyway just to irritate the Dupuytren's as payback for it picking on me. Love figuring out ways to get back at DD.
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07/31/2012 18:33
fmerk
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07/31/2012 18:33
fmerk
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Re: NA IN SEATTLE - NOT
My previous NA was in 2007 on the L Pinky. After that I wore a night splint all the time. So that lasted almost 5 years. My fasciotomy lasted maybe 3 years and the first NA maybe 1 year. For those I wore the splint a few months. I agree, in spite of the literature saying there doesn't seem to be a benefit I'm finding it does help.
RT sounds like it's most useful for nodules? I have mostly bands and the residual crap left over from previous NA and fasciotomy. Not sure if it would do me much good right now.
Fritz
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08/01/2012 04:35
flojo
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08/01/2012 04:35
flojo
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Re: NA IN SEATTLE - NOT
Yes, RT is for ACTIVE Dupuytren's. Nodules forming is a clear sign that it's active. I had other symptoms, like crawly feelings in the fascia of my hand, achy, loss of grip strength. If it's not active, it doesn't work. My radiologists wanted to know how I knew it was active.
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