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California calling-radiation therapy for Dupuytren's on West Coast?
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08/13/2007 17:40
Ethan 
08/13/2007 17:40
Ethan 
California calling-radiation therapy for Dupuytren's on West Coast?

Hi,

I am also moving towards radiation therapy, like the poster from Seattle/Tacoma. I have stage N-O Dupuytren's on both hands. Does anyone have a referral for doing radiation therapy in the Bay Area in California? Where in Oregon is Dr. Kline? Contact info?

I'm also inclined, if I can't find anyone locally, to travel far to get informed, competent treatment. Going to Germany seems a long way, and potentially expensive, but I'm very invested in my hands performing well for years to come (I'm 36). Anyone have thoughts on this?

Thanks for any help,

Ethan

08/13/2007 17:53
Sandie1141 
08/13/2007 17:53
Sandie1141 
Re: California calling-radiation therapy for Dupuytren's on West Coast?

Hi Ethan,

you have probably read my answer to Joe.

Here is the website for Dr. Kline. I don't think you should even think of going to Germany. At this point we have some of the best NA doctors in the world.

Go out to his site and let me know if you have any specific questions.

My husband's DD was too far along to have the radiation treatments. I know Dr. Kline is anxious to treat patients in the early stages with radiation since he is trying to prove he higher success rate when treated early.

Like I told Joe, I wouldn't try to contact him over the web (you can try, but don't get discouraged if you don't hear back) He might be on vacation. He works in the emergency room and "rents" space from the hospital to perform the NA procedure. He doesn't have a full time office or secretary, so it is harder to get in touch with him. With the NA field growing, hopefully some day soon he will quit his "day job" and do NA full time. He is a wonderful man. My husband is very happy with his results.

Sandie

08/13/2007 17:55
Sandie1141 
08/13/2007 17:55
Sandie1141 
Re: California calling-radiation therapy for Dupuytren's on West Coast?

DAHHHHH........

website

http://www.dupuytrenscenter.com/

08/14/2007 04:05
DianeS 
08/14/2007 04:05
DianeS 
Re: California calling-radiation therapy for Dupuytren's on West Coast?

Dr. Denkler once told me he had a radiologist who would do the radiation treatment but it is expensive.

08/14/2007 04:19
DianeS 
08/14/2007 04:19
DianeS 
interesting experience

Please excuse if this message posted previously.

A couple of weeks ago I was in our small town office supply store. The elderly man ahead of me was slow in completing his business and mentioned he had fingers that were curled downward and had surgeries for them. I asked him if he had Dupuytren's and he said yes. I told him I knew a doctor in the bay area that could fix it without surgery and showed him Dr. Denkler's NA handiwork on my pinky. I asked him if he would like the doctor's name and number and he said yes. While we were talking another younger man came up and said "I'd like that doctor's name too; I have the same thing." He showed me a classic bent pinky with a large nodule, and was curious about how the procedure worked. Both men took Dr. Denkler's name and number. The older man told me his sister has the disease too. So three of four customers in this small shop had the condition. The older gentleman showed me where one finger was amputated after an unsuccessful surgery some years ago.

08/14/2007 05:09
wach 

Administrator

08/14/2007 05:09
wach 

Administrator

Re: interesting experience

Good story, I am sure you made to people happy, at least if they then went to see Dr. Denkler! We really need to get better coverage in the media.

Wolfgang

Quote:



Please excuse if this message posted previously.

A couple of weeks ago I was in our small town office supply store. The elderly man ahead of me was slow in completing his business and mentioned he had fingers that were curled downward and had surgeries for them. I asked him if he had Dupuytren's and he said yes. I told him I knew a doctor in the bay area that could fix it without surgery and showed him Dr. Denkler's NA handiwork on my pinky. I asked him if he would like the doctor's name and number and he said yes. While we were talking another younger man came up and said "I'd like that doctor's name too; I have the same thing." He showed me a classic bent pinky with a large nodule, and was curious about how the procedure worked. Both men took Dr. Denkler's name and number. The older man told me his sister has the disease too. So three of four customers in this small shop had the condition. The older gentleman showed me where one finger was amputated after an unsuccessful surgery some years ago.




Edited at 08/14/07 08:19

08/14/2007 05:17
wach 

Administrator

08/14/2007 05:17
wach 

Administrator

radiation therapy in Germany?

Ethan, radiotherapy in Germany is probably an order of magnitude cheaper than in the US (don't ask me why). In the US I heard prices of 8,000 - 10,000 USD while in Germany you might get away with 1,000 USD. Of course you need to add the travelling expense you you will probably require to stay about two weeks. It really depends on whether your insurance covers it. If it doesn't and you have ample time and would enjoy a visit to Germany, it still might make economic sense. And people like Seegenschmiedt are experts in this type of therapy.

Wolfgang

Quote:



Hi,

I am also moving towards radiation therapy, like the poster from Seattle/Tacoma. I have stage N-O Dupuytren's on both hands. Does anyone have a referral for doing radiation therapy in the Bay Area in California? Where in Oregon is Dr. Kline? Contact info?

I'm also inclined, if I can't find anyone locally, to travel far to get informed, competent treatment. Going to Germany seems a long way, and potentially expensive, but I'm very invested in my hands performing well for years to come (I'm 36). Anyone have thoughts on this?

Thanks for any help,

Ethan


08/15/2007 03:41
Ethan 
08/15/2007 03:41
Ethan 
Re: California calling-radiation therapy for Dupuytren's on West Coast?

Thanks all for the info, stories, and suggestions. I will check to see if my insurance would cover the treatment.

Doing the procedure locally would allow me to not miss work, family, etc., but it seems like you would want an experienced doctor who is knowledgeable about the procedure (in terms of minimal radiation dosage, how much of the hand tissue you choose to expose, etc.).

I also sometimes think of waiting to see if the nodules/cords will progress and then doing NA (needle therapy). Do people have opinions as to the downsides of waiting?

Thanks again,

Ethan

08/15/2007 09:10
Wolfgang

not registered

08/15/2007 09:10
Wolfgang

not registered

radio therapy or NA?

My 5 cents:

If you catch a nodule early and radiate it, it might buy you, with a little luck, 20 or more years of peace. If you wait until you have suffient contracture to get NA you already have a significant cord and that will keep growing. There is a fair chance that Dupuytren will come back within 3-5 years. But the damage through NA is small and it can be repeated. With repetitive NA you can achieve also 10 - 20 years of a well functioning hand. NA is more inconvenient and more expensive (in Germany; seems to be vice versa in the US) but is only mechanical while radiotherapy still carries a, though very,very small, risk of cancer.

Wolfgang

08/15/2007 16:26
Sandie1141 
08/15/2007 16:26
Sandie1141 
Re: California calling-radiation therapy for Dupuytren's on West Coast?

I spoke with Dr. Kline the other day. He called regarding my husband's hand. My husband has had a "zap" that moves to the tip of the ring finger when he taps on a certain spot on his palm. It has been improving considerably, so the doctor felt that as long as it wasn't painful or bothering my husband, then he should back down on the time he wears the splints and give it another month or two. If it was bothering him, Dr. Kline would prescribe Neurontin. My husband says it isn't bothering him enough to take a medication.

I will try and get all this right. After talking to my husband I asked Dr. Kline some questions for you guys in the forum.

Dr. Kline is working with a cancer radiologist Tonya Kuhn (not sure of the spelling). She works in Boise and graduated from Yale. So far, she hasn't found another radiologist who is interested in working in the Dupuytren's field. Because the treatments have to be done consecutively, for five days, it is difficult for patients to have the procedure done. (I forgot to ask about price). At this point, she only takes referrals from Dr. Kline, after he determines if the patient is a good candidate for radiation therapy.
This is what Dr. Kline said he needs.

If a patient has a diagnosis from a surgeon, or knowledgable physician, and they have been graded 0-1 with a 10 degree or less contracture, they can send their information, along with pictures of the hand, to Dr. Kline through his website (dupytren'scenter.com) or call his office at 208-344-5628. Ms. Kuhn is anxious to teach other radiologist the procedure and if a doctor, or patient, can find a radiologist in their area, who is willing to learn how to perform the procedure, she is more than willing to teach them. Hopefully, this will eventually make the radiation treatment available to more patients.

As far as the Kenolog treatments to the nodules in the palm, this could delay the onset of the contracture.

Dr. Kline also stated that he has been overwhelmed since the article regarding his work and Dupuytren's came out in the New York Times on July 24th. He should be able to get back to contacting phone and website patients who have questions. You need to register (no charge) at the NewYorkTimes.com home page, then you can access the article from the 7-24-07 issue.

I hope this helps. Sandie

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