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radiation
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07/05/2008 18:25
bstenman 
07/05/2008 18:25
bstenman 
Re: radiation

The 7 treatments actually take 3 weeks to receive. The 7 treatment or exposures are done every other day (Monday, Wednesday, Friday) so one needs to arrive in Essen by Sunday and be diagnosed by the professor and scheduled in for treatment, which may not necessarily be started the same day. You need to stay in the area for at least two weekends during the treatment period, so best case you would be in Essen for 17 nights, and more likely for 19 nights. This is something that is not explained until you arrive in Essen at which time it may be difficult to alter your hotel and travel arrangements. I made arrangements and corresponded with Dr. Seegenschmiedt's secretary and then learned after I arrived and meet with the professor that I only had time in 2 weeks to get the 5 day series and would have to make a second trip to Germany from California and spend an additional 6-7 days there.

With the 5-day treatment (done twice) you get an exposure every day for the course of a week so it is possible to get your diagnosis confirmed and a treatment plan and treatment area done on Monday and be done by Friday. The treatment area is an important aspect of the diagnosis and XRT. Professor Dr. Seegenschmiedt found through palpation a much more extensive area needing treatment on the hand with less contracture than had been assessed 40 days earlier by Dr. Denkler who performed a NA on both my hands.

I believe that if the XRT is largely to prevent the worsening of my condition it was actually more important to treat the less affected hand. I would not recommend have XRT on just one hand (or foot). Had I received the XRT in the USA I doubt they would have accurately determined the area to be treated based on my experience.

The equipment used in Essen was an older technology but a machine that requires less precision in its use. I received my second series of treatments at the University of San Francisco Medical Center, which is a teaching hospital and therefore both receptive to new approaches to treatment and much less inclined to hide behind concerns of possible malpractice claims. The used a linear accelerator device for the XRT and I need to also pay for a scan so that Dr. Penny Snead could be sure of the settings to use. Dr. Snead and her entire staff were a real pleasure to be around and very supportive as was Dr. Seegenschmiedt's people in Essen - very atypical of the medical care I have received in the USA overall in my 50+ years.

In terms of cost, I had both hands treated for 5 days and was billed about 800 Euros ($1200) in total. The second round of 5 treatments was done in California and the amount billed was over $8000. Interesting in that I was treated as a alien visitor in Germany for so much less than as a resident of California by a state funded medical hospital. So you can probably guess my take on whether the United States should have nationalized health care like the rest of the civilized world.

Bruce

07/09/2008 11:41
arogers 
07/09/2008 11:41
arogers 
Re: radiation

Quote:



Australia Calling. Hi Ivy
Have you checked the Dupuytren Society web ' radiotherapy ' http://www.dupuytren-online.info There are two protocols used by Prof Seegenschmiedt in Germany. 7X3GY over 2 weeks (total 21 GY) or 5X3Gy in 1 week and repeated 3 months later. (total 30 GY)The process for the delivery is about 3 minutes. I received an email from a Society registered user 'Raynora' last August where he was treated 7X3Gy by his doctor in New York,after speaking to Dr.Cuttino who is on the Dupuytren Web. You could email Raynora for further details. (For information only) Click on' My Profile' at the top Open -Send an email and open' blue drop down' and scroll to member. Attach your email address for return mail. The email is sent via Dupuytren Society and is private. This may be of help . Regards from down under.



My email address as requested: andyrogers2000@comast.net


I talked with Dr. Kuhn in Boise, yesterday. She works directly with Dr. David Kline – he performs NA on patients and seems to be leading the charge to make the medical community aware of treatment options other than surgery. He and Dr. Kuhn work in conjunction – after he performs NA he refers patients to her for RT as a preventitive measure to halt the disease - sounds great.

She was very helpful and suggested that since I was in early stages with no contracture, I was a prime candidate for radiation. She also said if I can find a radiation oncologist in Atlanta willing to try, she will walk them thru the procedure. According to her, RT is no “rocket science” it is very simple procedure done using one of the most common pieces of equipment available to radiation oncologists – an electron machine. She said I would have a hard time finding any radiation oncologist who would not have all the equipment and expertise to treat me. Finding a doctor who's willing is another matter.

I am calling around to find someone who will even give me a consultation to discuss. My wife happens to have a client who is a medical oncologist (performs chemotherapy) – She is checking into radiation oncologists in my area who she might refer me to. In the meantime, she checked out the Dupuytrens information on-line and agreed that this looked like a viable option for me. Fingers crossed (no pun).

07/22/2008 04:36
Megan 
07/22/2008 04:36
Megan 
Re: radiation

Hi arogers,

I'm so glad you got in touch with Dr. Kuhn! That must have been the same day that I called to schedule my radiation with her...I was telling the receptionist that I was really glad I could get the radiation treatment in the US and I asked her whether they get a lot of people there from out of state, and she said she'd just been on the phone with a guy from Atlanta. Funny! Best of luck to you getting this to work for you in Atlanta.

Megan

Edited at 07/22/08 07:38

11/02/2008 01:19
dunegirl 
11/02/2008 01:19
dunegirl 
Re: radiation

I am so happy to have found this site! My diagnosis of duputryens was given to me one year ago at age 54. Within one year the one nodule became eight , both hands, and most recently the nodule in my palm became quite large and tender. After much research I have decided on radiation treatment and with the help of this sight found a doctor in LaJolla, Ca. I had my first meeting with him last week and we are meeting again on Nov.3rd to set up the "plan". He has suggested treating only one hand and seeing how it responds before going to the next. I have hope for the first time since the diagnosis. I went to several hand specialists , one in CA and one in MI who only response was waiting until the surgery became necessary. The pain in my hands has increased so much in the last two months that I knew contracture was close at hand (excuse the pun). I appreciate all that I have learned from this forum and I plan to share what my experience is with radiation.

11/02/2008 01:38
bstenman 
11/02/2008 01:38
bstenman 
Re: radiation

Glad you found someone nearby to do the XRT. Strongly urge you to have both hands treated. My left hand showed the greatest progression and I had XRT on both hands. The XRT seems to have completely halted the progression in my right hand and much less so with my left hand. The earlier the XRT the more beneficial the results and unfortunately my Dupuytren's was not properly diagnosed or treated by my original physician, Dr. Dawn Motyka, who even performed acupuncture (before I realized the true nature of the problems I was experiencing with my hand).

Try to get both hands treated with X-ray if you can as doing so is much more likely to halt further progression of the disease. If you have it in in one hand you can be sure it is also in your other hand, just not as prominent at this stage. All the surgical treatments are designed to correct the damage but do not halt the progression - only slow it down to varying degrees.

11/02/2008 05:49
newman 
11/02/2008 05:49
newman 

Re: radiation-Attention dunegirl

Hi Australia Calling,
Have you considered becoming a registered Forum User? If you read the quote: 'arogers 07/09/08-radiation' it can be a benefit, being a member, to avoid spam mail and send information between members. For example I have a clinical investigation from Prof. Seegenschmiedt I could send you, which sets out the procedure as carried out for the treatment of Dupuytren's and Ledderhose using radiotherapy. A recent book published by Springer 'Radiotherapy for Non-Malignant Disorders' written by Seegenschmiedt and others is also available in English in the US.
I take on board what bstenman has written about the treatment in both hands , however it is unwise to self diagnose.
Radiotherapy is best in the early stages before contraction takes place. In my case my right hand had only one treatment of 5 daily sessions of 3 Gy ,some 12 months ago , which was sufficient . Finally if you have the dupuytrens in both hands there is no point in waiting .Time is of the essence. Contact me if I can be of help. Regards from down under.

11/02/2008 19:00
bstenman 
11/02/2008 19:00
bstenman 
Re: radiation

The concern with self-diagnosis is not relevant with regard to Dupuytren's in the USA. I was mis-diagnosed by my primary care physician and this delayed treatment by 6 months. I was then advised by a certified surgeon who teaches at Standford Medical that my best course of treatment was open hand surgery which would entail the use of a tourniquet for 90 minutes or longer during the operation followed by 3 months of physical therapy for my left hand.

I did my own research of the medical literature and quickly learned of the high rate of complications from open hand surgery due to the use of the tourniquet and from injury to nerves and that complete use of my hand could take up to 12 months. The NA procedure was dismissed by the surgeon as too risky and not likely to last more than a couple years at best.

I had my Dupuytren's progression diagnosed by Dr. Denkler who performed a NA procedure on both hands though he did not think that the disease had really progressed in my right hand as I had a minor contracture and only a single nodule.

When I visited Professor Seegenschmiedt in Essen he palpated both my hands and in his opinion the disease has progressed throughout my right hand as well as my left. As a result the XRT was done equally on both hands. The primary benefit has been with my right hand which in the past 18 months has been completely stable with zero observable progression of the Dupuytren's.

So my opinion on the value of the ability of an American doctor to accurately diagnosis the extent of the Dupuytren's is that the odds are less than 1 in 1000 that this will occur. How many Dupuytren's patients has the doctor in La Jolla seen, palpated their hands, and treated, and been able to observe the relative success of the treatment 2-5 years later?

Dr. Penny Snead directed the second set of XRT for my hands in San Francisco but did so only because she could refer to the diagrams showing the area to be treated that had been personally prepared by Professor Seegenschmiedt 3 months earlier. She was smart enough to realize that she did not have the necessary background to make an accurate diagnosis of the area needing treatment.

I have full use of my right hand but the contracture has returned with my left hand. I believe that had I been properly diagnosed by my primary care physician and treated by Professor Seegenschmiedt at that time my left hand would also be stable. Instead I am faced with the need for periodic surgical procedures over the next 20-30 years.

In weighing the risks of skin cancer (as the XRT does not go down to the bones) versus the risk of the loss of the use of my hands, for me it was an easy decision to go for the radiation treatment. Knowing I had Dupuytren's at some stage in both hands it made no sense to not treat both hands from a medical perspective alone. With XRT it is clearly thought by Professor Seegenshmiedt that delaying treatment greatly reduces the long term benefit of the treatment.

11/02/2008 20:08
meganlyden@msn.com

not registered

11/02/2008 20:08
meganlyden@msn.com

not registered

Re: radiation

HI all,

Just wanted to report on my radiation treatment in Boise. I was referred to Dr. Kuhn, a radiation oncologist at St. Luke's (Mountain States Tumor Institute) by Dr. Kline. I live in Seattle, but travelled to Boise last June for a consult with Dr. Kline, at the Dupuytren's Center, at which time I received cortisone shots in the nodule in my right hand, and discussed with Dr. Kline my treatment options. I met with Dr. Kuhn and had my first round of radiation at St. Luke's in September. I was only aware of the nodule in my right hand, however, in the exam, Dr. Kuhn said she felt some thickening around the thumb of my left hand as well; she wasn't at the time sure if it was Dupuytren's or a prominent tendon, so we decided to wait until I returned to Boise for the second round of radiation to re-visit the left hand. However, after my second day of radiation treatment, I was looking at my left hand and I extended the thumb as far as it could be extended, and I could see a very thin, but unmistakable, fine cord extending into the palm. This cord is only visible when the thumb is completely extended and at a particular angle. I called Dr. Kuhn and we went ahead and started radiating the left hand as well the next day. As they didn't want to keep me there longer than a week (I was scheduled for Monday through Friday treatments) they gave me two treatments a day in the left hand, spaced 6 hours apart. I had open palm radiation (all radiated except for the tips of my fingers), which I'm glad I did, because when I came home, I also noticed a very, very, very small nodule (about the size of a sesame seed) near my right hand thumb. I'll be back in Boise for my second round of radiation in two weeks. It is done with some sort of electron radiation. I don't have to wear lead garments (I was told that the rays don't scatter like they do with x-rays). The treatment takes about 30 seconds per hand. My hands felt tingly for awhile afterwards; little dryness occurred during the days afterwards, but nothing extreme. Dr. Kuhn and everyone else at St. Luke's has been great, and there is a bed and breakfast right across the street from the hospital where I will stay next. The hospital is within walking distance of restaurants, museums, the greenbelt, which is a plus.

One more thing...since my diagnosis of Dupuytren's in April of this year, I have discovered that I know 8 people with it....only one of them has gone on yet to contracture (and this person had surgery, and her fingers are contracting again), but all the others have nodules and cords. This is obviously a more common affliction than I previously thought!

Megan L (Bellevue, WA, USA)

11/02/2008 20:10
Megan Lyden

not registered

11/02/2008 20:10
Megan Lyden

not registered

Re: radiation

I am registered, but not sure what I am doing wrong....last post said I'm not registered! Please advise!

Megan L

11/03/2008 02:44
newman 
11/03/2008 02:44
newman 

Re: radiation Login

Quote:



I am registered, but not sure what I am doing wrong....last post said I'm not registered! Please advise!

Megan L


Hi Megan Australia Calling.
The same happened to me, when the forum page opens- on the top right of the page, next to My profile ,click 'Login 'and enter your password. I see on the rankings 'Megan last pasted 6th Sept -08.' Try this. Regards.

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