This may be important for all patients seeking RT -

After a visit to a radiologist in the Tampa area who had started treating MD last year, I received a treatment proposal and cost for both hands totalling almost $12,000 - Since my private insurance would not cover the treatment initially, I had to consult professionals in Germany that are believed to have the most experience with MD and a wealth of successful treatment cases.

I wound up with Professor Dr. Seegenschmiedt in Hamburg who examined both hands and also my feet very thoroughly and proposed a treatment plan. I also consulted with Dr.med. Kuehlein in Munich to get a medical opinion from the surgery side of the spectrum. Both physicians rendered their opinions and view point with respect to my MD affliction and stage (I have early stage MD in one hand and advanced stage in the other hand) and what was recommended as best treatment option. The collective statements and medical opinion rendered by both physicians convinced the insurance and they consented to cover the RT procedure.

I underwent my first session in Hamburg in Feb. 2011 with the follow up session scheduled in May 2011. I observed no side effects and received first class treatment from the entire team at the Strahlenzentrum Hamburg.

Important: The extremely thorough examination and palpation of my hands as performed by Prof. Seegenschmiedt revealed a much larger area of affected tissue in both hands which lead to a much larger RT target area (approximately three times the size in the R/H and two times the size in the L/H) as originally planned by the Tampa radiologist. A beginning Morbus Ledderhose was also discovered in my right foot (which was not detected by the Tampa Physician). This is rather critical and patients should be aware that without a thorough palpation done by a knowledgeable expert, the RT target area could be insufficient (too small) and active fibroplasts could be missed which in turn reduces the effectiveness of the treatment.
The fact that the RT procedure In Hamburg is much less costly than in the US (approx. 1/5th of the US treatment cost) makes it much more affordable for self-pay patients and it may help to compel hesitant insurance providers to cover the cost. Even if one adds the cost for a commercial ticket to Hamburg and the cost for an inexpensive hotel nearby, it's still much cheaper as in the US and you get probably better and more successful treatment.

I can only encourage patients to look into this option as it makes a lot of sense. Besides, US visitors can explore Hamburg and use the 5 days as a nice opportunity to sample Germany. The daily treatment takes only a few moments out of a day and you can come and go for your daily RT as you please.

It's also noteworthy that the opinion of MD experienced surgeons seem to have changed towards RT and the option to do post RT surgery which could remove some of the hardened cords and knots is entertained by surgeons. In essence, one could consider a combo treatment where RT stops or significantly slows down MD progression and if so desired, a minimally invasive surgery or needle procedure done after RT completion, could reduce some or all of the prevailing restrictions thus achieving the most comprehensive effect for a patient.

I my case, the pain in both hands has subsided already and it appears as that the fibroplast activity has stopped or has slowed down considerably. I'll evaluate the status after the second session and make a decision for follow up surgery or needle procedure in due time. But it looks as that I can very well tolerate the residual knots and may not need to have any additional intervention.

My thanks go to the entire Hamburg team and the excellent care I received

Edited 02/24/11 17:32

THat is an amazing report - full of details and very convincing not only with regard to costs, but also with regard to the person of Prof. Seegenschmiedt - he seems to be very dedicated, thorough and thoughtful in his approach. Has he recently updated his clinical data ? I am now even more convinced to visit HAMBURG and the STRAHLENZENTRUM
to get my first round of treatment ... THX to everybody who shared their experience on this FORUM, THX to Wolfgang!

flojo:

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Thank you for your detailed report. It is good information for all of us on this Forum. I plan to appeal the denial of payment by Medicare for my 2nd RT at Scripps. If that doesn't work out for me and I need RT again, I'd definitely plan to go to Hamburg and Dr. S.

lauriw:

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How did you go about reacing Dr. S? Did you email or call? Would like to contact him, thanks
LauriW

MichaelWinzkowski:

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This may be important for all patients seeking RT -

After a visit to a radiologist in the Tampa area who had started treating MD last year, I received a treatment proposal and cost for both hands totalling almost $12,000 - Since my private insurance would not cover the treatment initially, I had to consult professionals in Germany that are believed to have the most experience with MD and a wealth of successful treatment cases.

I wound up with Professor Dr. Seegenschmiedt in Hamburg who examined both hands and also my feet very thoroughly and proposed a treatment plan. I also consulted with Dr.med. Kuehlein in Munich to get a medical opinion from the surgery side of the spectrum. Both physicians rendered their opinions and view point with respect to my MD affliction and stage (I have early stage MD in one hand and advanced stage in the other hand) and what was recommended as best treatment option. The collective statements and medical opinion rendered by both physicians convinced the insurance and they consented to cover the RT procedure.

I underwent my first session in Hamburg in Feb. 2011 with the follow up session scheduled in May 2011. I observed no side effects and received first class treatment from the entire team at the Strahlenzentrum Hamburg.

Important: The extremely thorough examination and palpation of my hands as performed by Prof. Seegenschmiedt revealed a much larger area of affected tissue in both hands which lead to a much larger RT target area (approximately three times the size in the R/H and two times the size in the L/H) as originally planned by the Tampa radiologist. A beginning Morbus Ledderhose was also discovered in my right foot (which was not detected by the Tampa Physician). This is rather critical and patients should be aware that without a thorough palpation done by a knowledgeable expert, the RT target area could be insufficient (too small) and active fibroplasts could be missed which in turn reduces the effectiveness of the treatment.
The fact that the RT procedure In Hamburg is much less costly than in the US (approx. 1/5th of the US treatment cost) makes it much more affordable for self-pay patients and it may help to compel hesitant insurance providers to cover the cost. Even if one adds the cost for a commercial ticket to Hamburg and the cost for an inexpensive hotel nearby, it's still much cheaper as in the US and you get probably better and more successful treatment.

I can only encourage patients to look into this option as it makes a lot of sense. Besides, US visitors can explore Hamburg and use the 5 days as a nice opportunity to sample Germany. The daily treatment takes only a few moments out of a day and you can come and go for your daily RT as you please.

It's also noteworthy that the opinion of MD experienced surgeons seem to have changed towards RT and the option to do post RT surgery which could remove some of the hardened cords and knots is entertained by surgeons. In essence, one could consider a combo treatment where RT stops or significantly slows down MD progression and if so desired, a minimally invasive surgery or needle procedure done after RT completion, could reduce some or all of the prevailing restrictions thus achieving the most comprehensive effect for a patient.

I my case, the pain in both hands has subsided already and it appears as that the fibroplast activity has stopped or has slowed down considerably. I'll evaluate the status after the second session and make a decision for follow up surgery or needle procedure in due time. But it looks as that I can very well tolerate the residual knots and may not need to have any additional intervention.

My thanks go to the entire Hamburg team and the excellent care I received