| Radiation in US |
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07/08/2008 22:13
carol 
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07/08/2008 22:13
carol
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Re: Radiation in US
Hi I'm new to the web site. I am 57 and I've had ledderhose for about 5 yrs. As of last fall I also have dupuytren's in one hand. I am diabetic and wondered if anyone else with diabetes has had radiation therapy for either condition. I also wondered if anyone wonders if cholesterol meds have any cause or effect relationship with these conditions. This web site is wonderful. It's nice to communicate with other people who know what these condtions are my md was clueless. carol
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07/20/2008 15:55
TWoods
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07/20/2008 15:55
TWoods
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Re: Radiation in US
Hi Linda B.
Two quick questions for you, if you don't mind. You mentioned in a earlier post that there is a new doctor in Vegas..... Who, please do tell ! I live in Vegas and cant find a one.
You also mentione a doctor at UCLA, I'm just wondering if you ever found out his name. The doctor you mentioned in Huntington Bach, a Dr. Capone. Do you recomend this dr. or not. Im on a mission to find a doctor LOL.Thought you could shed a little light on my plight :-) Thanks
Terry
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07/20/2008 20:54
bstenman 
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07/20/2008 20:54
bstenman
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Re: Radiation in US
Dupuytren's is an inherited malady and not related to diet the way most instances of diabetes are generated. The patient may have made a bad choice of parents but is not otherwise at fault.
I have noticed that my left hand which had the most contracture in April of 2007 when Dr. Denkler performed the NA and was radiated in May in Essen, Germany has benefited the least from both procedures after a year. My right hand had a much more minor contracture and a 1/4" (6mm) nodule on one finger near a joint. Dr. Denkler was not even going to perform the NA on this hand but I asked him to do so as long as I was there anyway, and he did.
When I met with Dr. Seegenschmiedt in Essen he palpated both hands and told me that the Dupuytren's had actually progressed nearly as much in my right hand as well as my left and so both hands received the XRT. A year later the right hand which was treated at a earlier stage, in terms of the progression of the disease, has shown no advance of the disease whatsover. I have full flexibility with this hand.
From this I would conjecture that it is best to get the XRT on both hands or feet at the earliest possible date and not to delay the treatment, even for a year as it will most likely impact your chances of halting the progression of the disease.
Based on Dr. Seegenschmiedt's more accurate diagnosis of the extent to which the disease had progressed, enabled by his many years of hands on experience with patients, I would hesitate to have a doctor with little or no experience determine the XRT treatment plan. Even Dr. Penny Snead at the UCSF Medical Center - Radiation Oncology practice in San Francisco (415-353-8900), who I highly recommend her and her staff, was willing to perform the second series of XRT on my hands as she had worked with Dr. Seegenschmiedt and trusted his judgment and was able to get my documentation of the first treatment series including diagrams mapping the areas to be treated for both of my hands.
It may be possible to get a NA procedure from Dr. Denkler whose office is in Larkspur (10 minutes north of San Francisco) on a Friday and start XRT with Dr. Snead the following Monday with a weekend holiday in San Francisco.
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07/20/2008 21:31
bstenman
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07/20/2008 21:31
bstenman
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adding complications from statins to Dupuytren's
Carol,
Just thought I would mention that if you are taking statins for treating high cholesterol that these drugs affect the entire body and can help the heart while damaging other parts of the body that rely on cholesterol for proper nerve function. Medical research shows that statins reduce the chance of a heart attack for only one person in 10 among those taking these drugs. But the big pharma companies make literally billions in pushing these drugs and doctors are worried about being sued by a family member because 1 of their 10 patients dies from a heart attack and the doctor did not proscribe a statin. As a result 90% of the people taking statins as proscribed by their doctor have not benefit whatsoever and yet are subjected to potentially serious and possibly permanent side effects or complications.
Doctors worry a lot more about being sued than about the side effects involved even with patients where there is little probability that the drug will provide any health sustaining benefits. If you have had a heart attack you are in the 10% group that should take statins. If your immediate family members died of heart attacks in their 50's you also would be most likely in the 10% group. Otherwise you are already dealing with one debilitating disease as it is and should really consider whether the very probably serious side affects from these drugs (affecting about 60% of patients and often with permanent damage) makes sense in your situation.
The American way of providing health care has resulted in our collectively spending twice as much as any other country while providing a at birth life expectancy that is surpassed by 46 other countries according to the WHO, and for women age 60 the life expectancy in this country is worse than that of 16 other countries, including some third world countries. Based on this evidence I would surmise that the drug centric approach to health care may be severely flawed and people should be cautious in accepting a doctor's prescribed drugs for their ailments. The FDA's own studies have shown that 95% of the time the choice of drug proscribed by doctors are influenced by cash payments made directly to the doctors by the drug companies that manufacturer them.
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07/22/2008 06:29
MIRUCAnot registered
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07/22/2008 06:29
MIRUCAnot registered
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Re: Radiation in US
BSTENMEN - I am looking at the radiation therapy, and currently do some other medical issues at UCSF, Are you suggesting the best path is to be seen by the German doctor to ensure accurate diagnosis and treatment but then perhaps have the actual treatment done at UCSF?
Are the Germans that far ahead or more knowledgable than anyone in the US?
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07/22/2008 06:55
newman
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07/22/2008 06:55
newman
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Re: Radiation in US
Australia Calling
I was told here in Australia 12 months ago by an Oncologist 'That the Germans are the WORLD LEADERS in the treatment of non malignant disorders by radiotherapy. ' I went to Germany and am very happy with the results.
It is hard to get the medical fraternity to accept change.
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07/22/2008 22:10
bstenman
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07/22/2008 22:10
bstenman
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Re: Radiation in US
Radiation treatment has been most extensively used and abused in the former Soviet Union were it was used because it was cheap and the medical community could not afford other treatments.
What is unique about Dr. Seegenschmiedt is that he has been personally meeting with patients and palpating their hands and feet for more than a decade. He has often seen people at the very early stages of the disease. Contrast that with the USA X-ray technicians that have never dealt with a Dupuytren's patient before you or maybe one or two. The surgeons that have been performing NA procedures for the last year or two have only seen patients at the advanced stages where a contracture is so debilitating that people seek surgery.
I had Dr. Denkler examine both my hands and if I had been able to find a local oncologist to manage the XRT I doubt very much that I would have had my right hand treated and yet actually the hand showing the least progression of the disease was the one that therefore would benefit the most from the XRT.
I realize I am a sample of one, but many medical studies have shown that the more often a procedure is performed by a particular doctor or institution the better the chances of a successful outcome and there is a much lower incidence of complications.
Unlike a melanoma where the medical practitioner can look at sample pictures there is no way other than direct hands on experience for a doctor to feel the extent of a disease like Dupuytren's.
My treatment covered 80% of my hands. If I was going to get XRT without the benefit of a Dupuytren's experience doctor I would try to get XRT for 100% of both hands or feet to be sure that the necessary areas were treated. Someone may know why only a portion of the hand received the XRT. I would be interested in the reasoning involved.
Bruce
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07/29/2008 02:14
dwilson540 
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07/29/2008 02:14
dwilson540
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Re: Radiation in US
Regarding earlier email about how patients find Dr. Reymond, I don't know for sure. I found him because my wife used to work at St. Francis Hospital in surgery. From her I learned that many things are treatable if found early enough. I'm also fairly aggressive when it comes to ol' number one! I'm not going to sit by passively and let it happen if I have options. I also have a friend who has advanced DC and know what the end result will be if I'm passive. It might get me anyway, but I'm not going down without a fight! I was set to go to Virginia and called St. Francis and talked to a nurse who told me that they had done someone like me within the last 12 months. Dr. Reymond is Swiss and had been to some forum in Paris where radiation therapy for Dupuytren's was discussed. My wife knew him professionally and I have some friends who know him and with those positive recommendations and no negatives I decided after consulting with him that this was going to work right here in Topeka. As I've said in another email in another thread I believe that this is working, that my nodules are perceptively smaller and I've yet to go for the second treatment (it's been 5 weeks, I've got one more week to go). That is just my perception, I have no quantifiable data, but the lumps don't seem as large. Received the statement from Blue Cross today, first half of treatment $10,758. BC paid $4417.49 and St. Francis wrote off $5,732.94 and my responsibility is $607.57. I can't say that I exactly understand how medical payments work. I assume that I'll owe something similar on the second half. Seems like a lot, but then I didn't go to medical school for 8+ years to learn how far to twist the dials. And when I think about the options that were available only a few years ago it seems like it is pretty cheap. Again, the number for St. Francis is 785-295-8000, ask for oncology and then ask questions.
Best of luck.
Dale
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09/02/2008 11:29
LindaB
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09/02/2008 11:29
LindaB
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Re: Radiation in US
Linda in California, U.S.A
HI T WOODS.. I believe Dr. Eaton shows a picture and name ofa physicianin Vegas on his web site.. ALSO..iT IS DOCTOR Prosper Benhaim at U.C.L.A..Dr. CAPONE IS AN INTERNIST..She does not do procedure for hands but had the good sense to want more info onthis subject of dups as she had patients coming in witht he desease
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09/02/2008 11:59
LindaB
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09/02/2008 11:59
LindaB
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Re: Radiation in US VEGAS
Linda in California, U.S.A
Hi Woods..
I went to Eaton's web site and looked under visiting doctors....There is a doctor in Las Vegas that was on the visiting doctor list and his in the process of putting up his web site.. Here is the info that I found..
DR RYAN GRABOW
NEVADA ORTHOPEDIC AND SPINE CENTER
2650 N.TENEYA WAY
LAS VEGAS, NEVADA 89074
FAX 7009330635
PH.7008780393
WEB WWW.DOCTORGRABOW.COM
I hope this helps
Linda
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