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Recommendation for St. Augustine, FL
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02/07/2009 23:35
newman 
02/07/2009 23:35
newman 

Re: Recommendation for St. Augustine, FL

Australia Calling, Hi Vicky Firstly how about becoming registered. I Can then send you selected information direct through the Society email system. With regards to the 7 day treatment I believe Prof Seegenschmiedt has been running the two protcols side by side to obtain the best result by using the minimum amount of radiation.His results show not much difference with either protocol. There are plenty of other protcols and I saw in the US one using 60 Gy. The 7 day option is available. I would ring and speak to Frau Giebels and explain you would like to arrange this protocol so she can schedule the time so you can arrange your flights. Tell her what you propose and arrange your flight and ring her back . In the early stages I emailed and phone the next day around 10am German Time. I think they start around 8 am check with her . My RT was more complex and the Prof had never seen a person with so much Surgery. I visited Essen 4 times for my hands and feet. I had my first visit in Aug 07 and finished Oct 08 . I am retired so my wife & I took the opportunity to travel as well. I can't remember you posting your age ,If you are young I would reconsider .(under40) Regards.

Edited 02/08/09 01:42

02/08/2009 02:16
vicki

not registered

02/08/2009 02:16
vicki

not registered

Re: Recommendation for St. Augustine, FL

Hi Newman and everyone,

First, how do I become "registered"? I tried clicking on the "register" and just ended up with another password to the forum. Please explain the procedure.

I ended up cancelling my plane reservation (not sure of other airline policies but Delta let me cancel my reservation within the first 24 hours with no charge) until I can talk with the clinic (Daniel)(Diane Giebel by his side) which will be tomorrow night. Basically if I have to make two trips to Germany it makes more sense (money wise) to just stay here in Florida and have Dr. Sinipoli in St. Augustine do the treatments. But I won't know until I speak with Germany Sunday night. I'm not all that interested in sight-seeing Germany at this time of year...Daniel said 8 degrees was the expected high for that day. And I'm coming from Florida and Panama, Central America (very thin blood). Not even sure I can find some gloves around here. But appreciate the travel advise. Will post after I know the treatment options Germany (Dr. Seegenschmeidt) is offering.

Vicki

02/08/2009 06:26
newman 
02/08/2009 06:26
newman 

Re Information to Login/Vicky

Australia Calling, Hi Vicky. It sounds as though you have registered and not logged in. At the top right of the forum page click "Login" and enter the details . If that doesn't work you will need further help from Wolfgang. Regards.

Edited 02/08/09 08:28

02/09/2009 21:34
vicki

not registered

02/09/2009 21:34
vicki

not registered

Re: Recommendation for St. Augustine, FL

Hello Everyone,

I finally gave up in trying to put together a trip to Germany. First Christiane (the regular secretary) has been ill for the past 10 days which is what created the confusion and info irregularities. Next when she did finally return to work they changed her computer programs while she was gone so couldn't access her emails right away. And finally I ran out of time trying to schedule an airline ticket at an affordable rate. All in all quite frustrating especially dealing with the time difference. So I'm scheduled to begin RT with Dr. Sonopoli in St. Augustine Wed., Feb. 11.

Will keep you updated on my treatments.
Vicki

02/14/2009 01:40
jomaskell

not registered

02/14/2009 01:40
jomaskell

not registered

Re: Recommendation for St. Augustine, FL

Vicki,
I haven't logged on for a couple of weeks so I'm just catching your discussion. I'm from Jacksonville, FL. I was curious as to why you chose radiation rather than NA. I've made plans to visit a Dr. Barry in South Florida, next week for NA. I'm planning on it being not a big deal, and very invasive as well as inexpensive.
Joani

02/14/2009 06:59
wach 

Administrator

02/14/2009 06:59
wach 

Administrator

Re: Recommendation for St. Augustine, FL

Joani, I can't speak for Vicki but basically radiotherapy and NA are for different stages of Dupuytren's. NA only makes sense if you have contracture, radiotherapy does not address contracture but the earlier stage with quickly growing nodules, see also the paragraph "stages and therapies" on http://www.dupuytren-online.info/dupuytr..._therapies.html.

Wolfgang

Quote:



Vicki,
I haven't logged on for a couple of weeks so I'm just catching your discussion. I'm from Jacksonville, FL. I was curious as to why you chose radiation rather than NA. I've made plans to visit a Dr. Barry in South Florida, next week for NA. I'm planning on it being not a big deal, and very invasive as well as inexpensive.
Joani



02/14/2009 21:15
vicki

not registered

02/14/2009 21:15
vicki

not registered

Re: Recommendation for St. Augustine, FL

Hello Everyone,

First a quick update on my radiation treatments in St. Augustine. I've had two so far and haven't really noticed any change except that immediately after each one my hand is weaker, more sensative and tires quicker. I notice all of these because I have to drive about 40 miles immediately following treatments. I also have 4 small tatoos on my palm marking the perimeter for all future treatment placements. The treatments take maybe 7-10 min with most of the time for positioning. I'm not covered with any lead coverings...I asked about this and they said the radiation is so finely directed no additional covering is needed.

I decided on RT instead of NA because I didn't want to wait for contracture to happen and then do something. I play bass in my family band and its important that my hands and fingers are flexible. I can also have NA if the RT doesn't work...and yes, NA is much cheaper.

Wolfgang, I've tried several times to become "registered" and have not had any success. So far, all I've done is click on "Login" in the upper right. This wants me to enter my username and password which I do then click Login and I receive the message "wrong username or password, try again". What am I doing wrong? Thanks.
Vicki

02/15/2009 10:34
wach 

Administrator

02/15/2009 10:34
wach 

Administrator

Re: Recommendation for St. Augustine, FL

Vicki, we don't have a registered user named "Vicki". Did you register under a different name? When typing your name and passowrd at login please note that the input is case sensitive (at least I believe it is).

Wolfgang

Quote:



...
Wolfgang, I've tried several times to become "registered" and have not had any success. So far, all I've done is click on "Login" in the upper right. This wants me to enter my username and password which I do then click Login and I receive the message "wrong username or password, try again". What am I doing wrong? Thanks.
Vicki


02/15/2009 12:04
jomaskell

not registered

02/15/2009 12:04
jomaskell

not registered

Re: Recommendation for St. Augustine, FL

Thanks Wolfgang,
I guess I need to educate myself a little more.
Joani
Good luck Vicki.

02/15/2009 12:55
TrevB 
02/15/2009 12:55
TrevB 

Re: Recommendation for St. Augustine, FL

Quote:



I also have 4 small tatoos on my palm marking the perimeter for all future treatment placements. The treatments take maybe 7-10 min with most of the time for positioning. I'm not covered with any lead coverings...I asked about this and they said the radiation is so finely directed no additional covering is needed.

I decided on RT instead of NA because I didn't want to wait for contracture to happen and then do something.


When I had my first week of treatment they just used the trace made by Dr Goode at the planning meeting to mark the area to be radiated each time, no tatoo marks. Probably that was due to whole palm & base of 3 fingers treatment being treated and not as such a specific point? I was also concerned about no additional shielding and received the same answer.

I chose RT for the same reason although my main concern was the condition worsening to require one or more surgeries in future.

Cambidgeshire, UK.

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