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Need Advice
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07/10/08 07:22
TWoods 
07/10/08 07:22
TWoods 
Need Advice

Hi Everyone,

I'm new to this site along with being recntly diagnosed. I posted in the wrong forum by accident. I wrote a little more in the foot section than I'm going to write here,feel free to go and read the sad details. Here I'm going to get right to the point, I'm so frustrated. I'm in phase one and my disease is moving along at a fast pace. From all I have read I feel it is urgent for me to see a doctor right away and start some kind of treatment. I live in Las Vegas and I cant find a doctor who is willing to treat me in any way other than surgery. I have given up hope on finding a doctor here :-( Unless any of you know of one? I assumed that if there isn't a doctor here surly there has to be a qualified doctor in the L.A. area Wth such facilites like UCLA I would think someone would be up on all of the new treatments. Once again I'm not only frustrated ,but I'm becoming downright worried and on the verge of panic. Everything I have read tonight rearding the new therapies are all done outside of the U.S YIKES. There is no way I can travel that far,San Diego,(scripps gren hosp.) L.A. or Long Beach (UCLA Med.) wold be awsome and If I must the farthest I could travel to would be Scottsdale AZ (Mayo Clinic)
HELP ! I need your advice,does anyone out there know of any doctors in any of the cities I mentioned ? At this point I'm open for any other sugestions you might have for me on the west coast. Any information you might be willing to share wth me, I cant tell you how mch I would appreciate it.

Thank You Terry

07/10/08 17:18
stevebopp 
07/10/08 17:18
stevebopp 
Re: Need Advice

I've had 3 NA procedures done in '03, '05, and this past April '08. First, by Dr. Eaton in Jupiter, FL., the second and third by Dr. Denkler in Larkspur, CA., just north of San Francisco. I enthusiastically recommend Dr. Denkler, here's his website. As you may already know, NA is an outpatient procedure. We are anxiously awaiting approval for the collagenase injection in 18 months or so.

http://www.plasticsurgerysf.com/dupuytrens/

07/10/08 22:44
Issleib 
07/10/08 22:44
Issleib 
Re: Need Advice

Mayo Clinics mentioned radiation in it's news letter so that might be a place to start for you if that's what your looking for

07/23/08 01:45
bstenman 
07/23/08 01:45
bstenman 
Re: Need Advice

To halt the progression the only know treatment is XRT and there is a very short list of people willing to provide XRT in the USA for Dupuytren's as is not an officially sanctioned treatment option by the AMA so serious medical liability concerns are raised.

Dr. Penny Snead in San Francisco or Dr. Kuhn in Boise are two people that are relatively close to you. The travel expense would be far less than what people, including myself, incurred going to Essen Germany. I would suggest doing whatever it takes to get the XRT as it appears to be effective in halting the disease when caught at the early stages, but is not effective once severe contractures occur (though it may still benefit other parts of the hand or the opposite hand). The longer you wait the less effective the XRT is likely to be a viable option for you.

I believe I would have been far better off if I had received XRT when I first noticed the contracture. Unfortunately my GP, Dr. Dawn Motyka recommended acupuncture (at her office) and I was too ignorant at the time to appreciate how bad her advice was and how much additional damage would result from the delay in receiving proper treatment.

07/26/08 18:52
TWoods 
07/26/08 18:52
TWoods 
Re: Need Advice

I Thank all of you for your valued advice. Just a quick update on my search for treatment, you know the old saying when it rains it pours,well it certainly applies to my search ! If you remember I was on a all out mission to find a treating doctor on the west coast, I literally spent a solid week of calling doctors, I made it my full time job & boy did it pay off ! I located a doctor in L.A. That does na I also found a doctor that is opening a hand clinic right here in Las Vegas ,he also does na. So I made a appointment to see him the first week the clinic is open LOL. As if that weren't enough of a success to my searching, I heard from the Mayo Clinic I Scottsdale,the doctor reviewed my information and feels he can help me. Yippie I think? I'm assuming Mayo clinic does everything x-ray etc. But I'm not sure, does anyone know weather they do or don't? I will be awfully disappointed to travel there only to find out they don't and could of had injections and na done in my home town. I thought it was interesting that when I spoke to one of the doctors opening the new clinic, he said he wouldn't advise getting radiation therapy. He claims to have seen to many patients that were burnt from it. Hmmmm I'm sure he has, but from what I have been reading it is the only thing that has shown to halt or slowdown the disease. Sometimes I think some doctors would feel differently about these therapies if it were there hands at steak. So now that I have found some doctors I have a whole new set of problems and questions I'm dealing with OYE, it never ends. Thank Goodness I have this forum to come to to seek advice, once again thank you all.

Terry

07/27/08 18:33
wach 

Administrator

07/27/08 18:33
wach 

Administrator

Re: Need Advice

Hi Terry, just a few comments

"I'm assuming Mayo clinic does everything x-ray etc. But I'm not sure, does anyone know weather they do or don't?"
Not sure. It might be interesting to find out. If you look at the web site of Mayo clinic http://www.mayoclinic.com/health/dupuytr...ments-and-drugs they describe the therapy options pretty well but it is not clear whether they offer all those options.

"I thought it was interesting that when I spoke to one of the doctors opening the new clinic, he said he wouldn't advise getting radiation therapy. He claims to have seen to many patients that were burnt from it."
Patients with burnt skin were exposed to excessive radiation. I never heard of skin burns after treatment for Dupuytren's. Some people experience a dry skin in the treated area, I myself didn't but that may just been luck.

Wolfgang

07/29/08 08:15
newman 
07/29/08 08:15
newman 

Re: Need Advice

Australia Calling, Hi Terry:
I have undergone radiotherapy on both hands and feet within the past 12 month. I had no redness or burning sensation, only a small area of dry skin about 2 cm. showed up in the centre of the target area some weeks after treatment. I used to massage the area with a creme containing Urea which helped. My surgeon tried to talk me out of RT mentioning all these terrible things like holes burnt through the hand etc.but when I came back after treatment he was converted. They were taught what happend back in the 50s and 60s.( They were not using low doses of RT )
Finally I repeat what prof.Seegenschmiedt wrote taken from(page 41) "Radiotherapy for Non-Malignant Disorders" Quote [ The main factor determining risk is the site of treatment . For all peripheral indications such as Dupuytren's contracture , tennis elbow or heel spur,radiation risks are very small, indeed, and comparable to those from common diagnostic X-ray examinations. ] That was good enough for me . Regards.

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