| Radiation in US |
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06/24/2008 15:32
Lisa 
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06/24/2008 15:32
Lisa
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Re: Radiation in US
Have you looked at the info site for this forum http://www.dupuytren-online.info? It has a lot of good information for the questions you are asking.
The younger you are diagnosed with this, the bigger chance you have of it being aggressive. Each case is different. Some people never have problems with contracture, others have quite a bit. It could only take months, or it could take years to develop into contracture. Some people never have it come back after surgery and/or other types of therapy and others have it come back several times.
Some insurances seem to pay for radiation and NA without a problem and others have had to fight to have it covered. There is a thread here for a letter that someone wrote to their insurance company that could be helpful if you need it. You would have to do a search for it though. Both radiation and NA have become recognized therapies by such places as the Mayo Clinic. which is a good argument against insurances that might not want to cover it.
From what I have read, many specialists haven't caught up with the times yet and still only recommend surgery as treatment. So as far as finding a doctor goes, there are some listed on the information page but other then that you will probably need to do a bit of calling around to see what doctors are in your area. I may have to do this myself depending on what my actual diagnosis turns out to be so if anyone knows of any good specialist(s) that deals with this in Michigan, I'd appreciate if you could post who they are.
Edited at 06/24/08 18:36
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06/24/2008 18:21
Megan 
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06/24/2008 18:21
Megan
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Re: Radiation in US
Hi arogers,
You might even call the radiation oncology departments at some of the medical centers in Atlanta and ask them if they are familiar with it or open to discussing it with you. Dr. Kline told me if I could find a radiologist in Seattle who would treat it, the radiation oncologist he refers people to in Boise would talk another radiologist through the procedure.
Megan
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06/26/2008 14:33
LindaB 
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06/26/2008 14:33
LindaB
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Re: Radiation in US
Hi Megan..
I am a past patient of Dr. Eatons..I was one of the first to go in 2004, but did not make the hall of fame.. Rats...
Dr. Eaton is wonderfull..I have Dups in my left hand pinkie with finger at about 90 per cent bent and right hand is just starting to give me problems even though the nodule has been there since 2004..
Dr. Eatons adventure was absolutely painless..and I came out with an ice bag and went touring...
I scheduled an appointment with Dr. Kline last year through Jill in the office..Jill seems very nice..I had to cancell the appointment..
I am thinking about going to the doctor at U.C.L.A. Medical ..Has anyone been to him? Does anyone know where I can get any information on him besides web site..
L.A. is a short drive for me as I am in Southern California..I like the idea that Dr. Eaton has him on his list of doctors to see.....Alot of other doctors in southern California are not exploring this procedure..N.A. They seem to be behind the times and are not looking forward for some reason....and do not even know mych about N.A..I have taken copies of photos and info from Dr. Eatons and they look shocked....I have had one doctor call me and ask me for phone numbers and infor...Dr. Capone in Huntington Beach..AT LEAST SHE HAS AN OPEN MMIND...and is giving this info to her patients..as she has seen my hands before and after..
Anyway...I am looking for info on U.C.L.A. doctor or anyone else in California.. although there is a new doctor in Las Vegas..
The radiation issue is quite interesting....I first noticed dups at age 58..my paternal cousins also have the desease...but not as advanced as mine...No diabetus.no drinking...
Let us know how you liked Dr. Kline..I am also recommending that people look into a hand splint for your hands to lay in at night..This does help..Dr. Eaton has them made for you but I do not think Dr. Kline has the facilities yet to do that..
Good Luck to All
Linda B
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06/26/2008 14:36
LindaB
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06/26/2008 14:36
LindaB
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Re: Radiation in US
Megan..
Does anyone know Dr. Eaton's opinion on radiation??
Linda B
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06/26/2008 15:30
Linda Bnot registered
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06/26/2008 15:30
Linda Bnot registered
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Re: Radiation in US
Quote:
Hi Lisa,
I will keep you in my thoughts and hope everything works out with your husband's job and the insurance. I know what a worry that is. I didn't have health insurance for years as a self-employed musician. Please keep in touch about your situation. I paid for the steroid injections out of pocket, and they were not expensive.
Megan
Hi Megan
I am interested in knowing whether Doctor Kline cut the cords with the small needle..N/A/ or just gave the shots..
Dr.Kline it is my understanding has Dups himself and had N.A. in France..
If he did not do N.A. was it because the cords were not that advanced....
I am also noticing on forum that alot of people are noticing this desease inlate 50s..as was my case..
In case new comers want more info you can go to www.thehandcenter.org.....Dr Eatons web site has a ton of information..just takes time to sit down and read...but very informative..
Linda B
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06/26/2008 17:08
Megan
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06/26/2008 17:08
Megan
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Re: Radiation in US
"Let us know how you liked Dr. Kline"
Hi Linda,
I haven't had any contact with Dr. Eaton's office, so I don't know his opinions about radiation. I can tell you that I really, really liked Dr. Kline and his staff; I had spoken several times on the phone with Jill, who is really nice and helpful; the day I visited Dr. Kline, his assistant Christi was there; she was great, too. I felt very comfortable as soon as I met Dr. Kline and I trust his judgement completely. I wrote a little more about my experience there on a previous post. I only had steroid injections (not NA) because I just have one nodule and the beginnings of a cord...no contracture.
By the way, I first noticed the nodule at age 47 - I thought it was a splinter stuck in my palm from gardening...no drinking, no diabetes either, no smoking...genes are genes, I guess!
- Megan -
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06/26/2008 18:41
LindaB
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06/26/2008 18:41
LindaB
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Re: Radiation in US
Quote:
"Let us know how you liked Dr. Kline"
Hi Linda,
I haven't had any contact with Dr. Eaton's office, so I don't know his opinions about radiation. I can tell you that I really, really liked Dr. Kline and his staff; I had spoken several times on the phone with Jill, who is really nice and helpful; the day I visited Dr. Kline, his assistant Christi was there; she was great, too. I felt very comfortable as soon as I met Dr. Kline and I trust his judgement completely. I wrote a little more about my experience there on a previous post. I only had steroid injections (not NA) because I just have one nodule and the beginnings of a cord...no contracture.
By the way, I first noticed the nodule at age 47 - I thought it was a splinter stuck in my palm from gardening...no drinking, no diabetes either, no smoking...genes are genes, I guess!
- Megan -
Hi Magan and all in forum
I did my research and went back on forum 2 and looked at comments about doctors....Dr. Benhaim is close..L.A. As I am in Orange County..
I called his office and spoke to Louise..and am going to take my pictures of my hands..palms up and down and send to Dr. Benhaim's office and from there I will schedual an appointment for the n/a/ procedure....My left pinkie is at about 80 or 90 percent bent towards palm and I already know from Eaton'soffice in 04 that this cannot be completely streight unless I want to have a procedure that replaces joint in finger because of calcification of joint in pinkie from no movement over the years.....Boy.. that was a mouthfull..
So..as soon as I go and have these things done I will be back to let you goes know what happened....I know all the info we can get is helpfull...I want it done as soon as I can get it..
Linda B
I am hoping Dr. Benhaim does the splint to wear at night as I know this helps..from previous n/a with Dr. Eaton..
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06/26/2008 18:57
Megan
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06/26/2008 18:57
Megan
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Re: Radiation in US
Hi Linda,
Best luck to you! I hope all goes well and that you get an appointment soon. It is really great to know that there are doctors out there who are more open-minded in their approach to this!
- Megan -
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07/02/2008 15:17
dwilson540
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07/02/2008 15:17
dwilson540
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Re: Radiation in US
A couple of comments regarding my experience with radiation thus far. I didn't notice any tenderness, swelling, burning, anything with my hands. Nothing, zilch! My perception after one treatment is that nothing has changed. I realize that this is only about a month and that the disease progresses by fits and starts, but thus far I'm encouraged. Understand I am in the very early stages of the disease and would be thrilled if we could stop it right here. The nodules don't seem to have gotten any smaller (no larger either). But I've also worked on losing weight in the last six weeks or so and have dropped about 12 pounds (I'm now about 195). Could I have lost an ounce or two off my palms? But I am primarily writing to give my observation on the immediate effects of the radiation treatment on my hands. I'm an "outdoorsy" guy and my hands are fairly tough, but I have had no problems what so ever.
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07/05/2008 20:28
bstenman 
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07/05/2008 20:28
bstenman
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Re: Radiation in US
I posted in another section my experience with the clinic in Essen and with the UCSF Medical Center in San Francisco, but would add that Dr. Denkler, who performed NA procedures on both my hands, was in favor of the XRT as a therapy.
The dosage is very low compared to XRT for various forms of cancer and is not applied near any organs of the body (which are shielded by lead during the exposure of the hand). The depth of exposure is also controlled by aiming devices within the machines so the X-rays are concentrated in the layer where the Dupuytren's is affecting the underlying fascia. Considering the statistics on people who have received extensive XRT for cancer, and with compromised systems, is not relevant to the XRT treatment of a hand for Dupuytrens.
At this point in time XRT is still the only treatment than may lessen the severity of Dupuytren's over ones lifetime. Every other treatment can only target the symptoms and correct the contractures and nodules that result from the disease.
My right hand that had significant development of affected fascia tissue but much less evidence of contracture and a single nodule has not had any progression since the single NA and the XRT. My left hand has had a return of the contracture since the NA and XRT that was performed a little over a year ago. This is what one would expect if the XRT is viewed as a way to halt progression but not reverse it. It is better to have it done as soon as possible and to have both hands or feet treated.
That is not the official position of the medical community but by the time it is "endorsed" it will be too late for many people. Dr. Denkler mentioned how slow hand surgeons were to change methods even when thousands of cases over a period of years supported such a change. As a professional he found it frustrating. As a patient I find it irresponsible to the point of malpractice on the part of these surgeons.
Who would want to learn after receiving a fasciectomy on their hand and loss of its use for 6-12 months or possible longer that a better tourniquet or arterial clamping procedure would have greatly reduced the risk of complications (which studies on fasciectomies place at 19%)? And I certainly did not find my first hand surgeon, someone who was board certified and teaching courses at Stanford, to be at all forthcoming about the risks. In fact he greatly exaggerated the risks from NA (which run at 2-3% for all reasons).
Based on my experience I would recommend going to Essen to obtain an accurate diagnosis of the state of the progression of the disease and to obtain treatment. Even with medical insurance the cost of the second round of treatments in the USA was double the cost to obtain treatment in Essen. The additional travel expense was to me a value as I had plenty of time with early morning treatments to spend the remainder of the day and the weekends traveling around the area as a tourist.
Bruce
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