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Going to Germany for RT!
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06/13/2011 01:47
Cyclist 
06/13/2011 01:47
Cyclist 

Re: Going to Germany for RT!

Hi spanishbuddha
Hahaha! You rode through the same place I did, and everything was going well for me too, without any complaint from the generally easy-going Germans. However, my mistake was to take a wrong turn and end up in the children's playground - that's the point at which I was spotted by a park ranger and ejected from the park rather unceremoniously!

Good to hear you got to finish your ride and have a positive treatment and Hamburg experience

All the best
Di

spanishbuddha:
I've just returned from Hamburg following my second round of RT in one hand.

Nothing to report really, everything went fine, staff at the clinic were excellent.

Hamburg in June was a complete contrast to late February. What a wonderful city and experience. I really have fallen in love with it. To compare with another city I love, at home, Hamburg is a cleaner, politer and less cramped continental version of London.

Just to follow up Di's comment about cycling, I too rented a bike and cycled through Planten un Blomen, just like every one else, and no-one seemed to mind. Of course this is different perhaps from the Botanic Gardens.

06/13/2011 18:21
fitfeet 
06/13/2011 18:21
fitfeet 
Re: Going to Germany for RT!

Just seen you are already back SB, hope Hamburg was good?
How does your condition seem now, or is it too early to say?
regards
Robert

06/13/2011 21:03
spanishbuddha 

Administrator

06/13/2011 21:03
spanishbuddha 

Administrator

Re: Going to Germany for RT!

Hi fitfeet, it's really too early to say anything. First there may be some side effects over the next few weeks, such as dry skin, soreness, discolouration, ..., then it seems from other people who have had it done improvement such as a reduction in size of nodules may occur over many months. I'll share any changes I notice as they occur.

11/04/2011 14:27
Penny 
11/04/2011 14:27
Penny 
Re: Going to Germany for RT!

Hi all you great forum members!!
I went to Germany for RT on my feet in September and am updating-- I really haven't noticed any changes to my feet that I can tell for sure. I can kind of imagine that one of my nodules is smaller--but just not sure, which in my mind is a successful treatment because before I left my feet were advancing rapidly. I am hoping over the next few months after my second treatment that my nodules will even regress.
The treatment I received in Germany was wonderful, I met some other great forum members and we had a great time seeing Hamburg and supporting each other during the week. Prof. Seegenschmiedt was very competent and the whole experience was tremendous.
I have seen on this thread and others comments about "not being able to afford" a trip to Germany and because cost was a major consideration when I went to Germany, I am curious about what costs are from place to place in the states. I have read on the forum and called around in the US, before I made my appointment and costs ranged in the $18,000-25,000 range. There is a thread on “cost of RT”—I will post my costs there and would also like to encourage others to post their costs.
Just to report back my expenses in dollars--were $1380 flight, $313 Mein hotel, $1375 RT ($687.5/foot—Euro 450). My flight in Dec is only to be $945, so next time will be even more cost efficient.

Also, FYI, one of the patients I met over in Germany had had RT done in CA, and had an increase in the nodules in her hand and she thought possibly her RT wasn't done correctly in CA.

Looking forward to my next treatment and will keep you posted.
Penny

11/07/2011 10:44
Cyclist 
11/07/2011 10:44
Cyclist 

Re: Going to Germany for RT!

Hi Penny
I'm glad you had a good experience in Germany and with your treatment. The information you provide will be useful for others on the forum.

I also had rapidly progressing situation with my feet. I just wanted to let you know in case you have a similar experience not to worry if it actually gets temporarily a little more strange and uncomfortable after treatment before improving.

I can now forget about my feet more often than not. They're still not totally normal, with some slight discomfort and strange sensation, but I am a vast improvement compared to prior to treatment. It's only 6 months since my second treatment too. Apparently many people keep improving for up to a couple of years, so all is headed in the right direction.

All the best for your recovery
Di


Penny:
Hi all you great forum members!!
I went to Germany for RT on my feet in September and am updating-- I really haven't noticed any changes to my feet that I can tell for sure. I can kind of imagine that one of my nodules is smaller--but just not sure, which in my mind is a successful treatment because before I left my feet were advancing rapidly. I am hoping over the next few months after my second treatment that my nodules will even regress.
The treatment I received in Germany was wonderful, I met some other great forum members and we had a great time seeing Hamburg and supporting each other during the week. Prof. Seegenschmiedt was very competent and the whole experience was tremendous.
I have seen on this thread and others comments about "not being able to afford" a trip to Germany and because cost was a major consideration when I went to Germany, I am curious about what costs are from place to place in the states. I have read on the forum and called around in the US, before I made my appointment and costs ranged in the $18,000-25,000 range. There is a thread on “cost of RT”—I will post my costs there and would also like to encourage others to post their costs.
Just to report back my expenses in dollars--were $1380 flight, $313 Mein hotel, $1375 RT ($687.5/foot—Euro 450). My flight in Dec is only to be $945, so next time will be even more cost efficient.

Also, FYI, one of the patients I met over in Germany had had RT done in CA, and had an increase in the nodules in her hand and she thought possibly her RT wasn't done correctly in CA.

Looking forward to my next treatment and will keep you posted.
Penny

01/05/2012 07:32
GaryBall 
01/05/2012 07:32
GaryBall 
Re: Going to Germany for RT!

Hi guys,
I m new to this, but have found this site really great to help make choices on the way forward. So I thought I should put a bit back and hopefully help someone else.
Over the past year I noticed increasing soreness in my feet. I put this down to getting older....and continuing to play my sport like I did 20 years ago...the solution I thought....better sports shoes.....insoles.....and.....just harden up!!!!
I thought that icing after play and longer rest between activity may help......then......6 months ago before a tennis match I harassed my wife into massaging my feet......she was shocked at the lumps on my soles.....I was nt to pleased either....a number of trips to a variety of medical pros later I eventually get A diagnosis.......ledderhose!! .....next stop...... Loadsa time researching and eventually this site.....
It has been quite freaky reading what this condition has done to some poor folk.....I soooo.......empathize...these stories really got my attention and backside into gear to get some quality treatment....As for me.... I have always been fit and healthy..... And with a bouncy 2 year old.....fully expected to be running around with him for many years to come.....with the help of this site I have weened myself off my sport for the forseable future and booked into hamburg for RT..... I will be there between 16th and 20th Jan and have booked into the Mecure hotel......I thought the name was quite relevant and inspiring considering the circumstances....the choice of treatment seemed a no brainer to me .....even though I ve got 30 hours of travel from new Zealand......and the cost of flights....it seems that prof. S has an outstanding reputation in this field.....
So I would like to thank everyone who has posted their stories.....without this I would be none the wiser....I will keep you updated on my hamburg radiation vacation.

01/05/2012 08:04
wach 

Administrator

01/05/2012 08:04
wach 

Administrator

Re: Going to Germany for RT!

Hi Gary,

I guess you are aware that you also could have gone to Hamilton rather than Hamburg? http://www.dupuytren-online.info/radiotherapy_clinics.html

Wolfgang

GaryBall:
... and booked into hamburg for RT..... I will be there between 16th and 20th Jan and have booked into the Mecure hotel......I thought the name was quite relevant and inspiring considering the circumstances....the choice of treatment seemed a no brainer to me .....even though I ve got 30 hours of travel from new Zealand......and the cost of flights....it seems that prof. S has an outstanding reputation in this field.....
So I would like to thank everyone who has posted their stories.....without this I would be none the wiser....I will keep you updated on my hamburg radiation vacation.


Edited 01/05/12 10:05

01/08/2012 11:29
Larry 
01/08/2012 11:29
Larry 
Re: Going to Hamburg/Germany for RT !

GaryBall:
Hi guys, ....

So I would like to thank everyone who has posted their stories.....without this I would be none the wiser....I will keep you updated on my hamburg radiation vacation.

Thx Gary for this nice summary of all your thoughts !

As far as I understand from my visits in Essen and Hamburg, Prof. Seegenschmiedt is also a Marathon runner who has achieved some reputation even in RUNNER'S WORLD - a runner's magazine which has a 50.000 number edition every month in Germany. And for his age he belongs to the better half of the people running as far as I understand these figures.

http://www.runnersworld.de/gesundheit/he...iedt.217748.htm
http://www.runners-power.de/inhalt/index...5&Itemid=43

On your 2nd visit in HAMBURG during your "Radiation Vacation" you may want to attend the 27th HASPA Marathon !

http://www.haspa-marathon-hamburg.de/index.php/en

Wish you every best ! I am not a runner; but my walking is excellent after postoperative radiotherapy for recurrence !

Larry

01/09/2012 06:28
GaryBall 
01/09/2012 06:28
GaryBall 
Re: Going to Germany for RT!

Hi Wolfgang,

Thanks for the tip....I am aware of the option in Hamilton. I called them.....along with a number of other practices on this web site that are geographically closer to us than Hamburg.....the difficulty for me was that getting things moving quickly....and having faith that the the treatment would be effective......
I have watched Prof S. Presentation at the 2010 dupuytren forum in Miami.....the message I received from this was that he was very keen to express that early RT was most likely to result in a positive outcome......this presentation can be seen on YouTube....just type in ledderhose.....I have also seen people on this forum suggest that their RT might not have been effective as it had nt covered enough of the diseased tissue.... This resulted in nodules growing just outside the radiated area a year or so later....they then went on to get RT in Hamburg..
For me....I am very concerned about what this condition can do.......I am far from wealthy..... But I am prepared to make the sacrifices to see the Prof..... Who has the experience and the equipment to give me the best chance of a positive outcome..... This forum has many people who sound really pleased with their Hamburg experience......so for me....it's a no brainer.....
I get on the plane this Saturday for a 30 hour trip......bring it on.....i have a nice surprise for these nodules.....

Thanks Gary

wach:
Hi Gary,

I guess you are aware that you also could have gone to Hamilton rather than Hamburg? http://www.dupuytren-online.info/radiotherapy_clinics.html

Wolfgang
GaryBall:
... and booked into hamburg for RT..... I will be there between 16th and 20th Jan and have booked into the Mecure hotel......I thought the name was quite relevant and inspiring considering the circumstances....the choice of treatment seemed a no brainer to me .....even though I ve got 30 hours of travel from new Zealand......and the cost of flights....it seems that prof. S has an outstanding reputation in this field.....
So I would like to thank everyone who has posted their stories.....without this I would be none the wiser....I will keep you updated on my hamburg radiation vacation.

01/09/2012 06:37
GaryBall 
01/09/2012 06:37
GaryBall 
Re: Going to Germany for RT!

Thanks for that Larry.....it's really encouraging to hear about positive outcomes

Gary

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