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Recommendation for St. Augustine, FL
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01/26/2009 10:06
vicki

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01/26/2009 10:06
vicki

not registered

Recommendation for St. Augustine, FL

Hi everyone,
Can anyone give me a recommendation or their experiences with regard to RT received by Dr. Sinopoli at Flagler Cancer Center in St. Augustine, FL. I have 2 nodules on my right hand at the base of my middle finger, one I've had over a year.
Thanks
Vicki

02/03/2009 21:34
vicki

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02/03/2009 21:34
vicki

not registered

Re: Recommendation for St. Augustine, FL

Hello Everyone,

Since I didn't receive any feed-back for St. Augustine, FL, I will keep you updated on my experience. I first noticed a small nodule on my right hand at the base of my middle finger in Dec. 07. I watched it triple in size in one year and another nodule appear in the next fold of my palm directly below the first during the year. In Dec 08 I finally went to a Dr who told me I had DD and told me the only thing he could do was operate. (This was in Panama, Central America) I have no contractures at this time tho it does look like a cord is beginning to form along the right side of my middle finger.

I began reading everything I could find on the internet and found the listing for Flagler Cancer Center in St Augustine, FL (Dr. Sinopoli) here under Clinics for radiation therapy.

I called all the other listings and found Flagler the least expensive (no insurance, self-employed musician (family band: www.roefamilyband.com) ($5000 cash) (this point very important to my family) but they do require an MRI ($500) before treatment. My consultation is tomorrow (Feb 4) followed by the MRI and radiation to begin on Friday. I don't know if my hand has progressed beyond RT. I hope Dr. Sinopoli is honest and will give me his professional advice without looking at the $'s.

By the way, I just turned 49, and found out my Grandfather on my mother's side had "curled fingers" the family attributed to a horse kicking him in the arm and that injury never healed properly. Now my aunt is alerting everyone (12 aunts/uncles and 53 cousins) to watch for this.

I do have a question...is radiotherapy and radiation therapy the same?
Keep you posted.
Vicki

02/04/2009 05:07
Wolfgang

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02/04/2009 05:07
Wolfgang

not registered

Re: Recommendation for St. Augustine, FL

Hi Vicki,

if you have no insurance to cover your radiotherapy you migth consider to fly to Germany, e. g. to Essen. The treatment there is significantly cheaper, probably in the 1,000 - 1,300 USD range (you can inquire upfront). Even with the added travelling expenses (staying 8- 9 days) you will probably end up well below 5,000 USD - and see a little bit of Europe, too.

BTW radiotherapy and radiation therapy are two names for the same thing.

Wolfgang

02/05/2009 00:02
vicki

not registered

02/05/2009 00:02
vicki

not registered

Re: Recommendation for St. Augustine, FL

Hello Everyone,
Today I met with Dr. Sinopoli and Linzzey, his assistant. Both were very nice and answered all my questions plus more. I was honest and told them I was considering going to Germany because of the cost. Dr. Sinopoli told me he learned about the radiation therapy from the Dr in Essen and hoped to one day visit there. He has only been doing RT for 2 years and has treated about 10-15 people but said the number is significantly increasing recently. Many due to injuries to the hands or work related (i.e a 35 yr.old male plumber coming in next week with 5 nodules on both hands).

I did go ahead and have the MRI done and am going to meet on Friday with Dr. Sinopoli for a report/reading. He did agree if I decided to go to Germany I would be given the MRI on disk form to take with me.

I emailed the office listed under the clinics for Germany for Essen today (have not received a reply yet). I called about noon east coast time and there was no answer so thought I'd try late tonight. I don't have any idea time difference.

Wolfgang, do you know what airport is closest to Essen to fly into? What is the time difference? Basically I have a 3 week time window I need to work within or I will begin radiation therapy here in St. Augustine on Monday (Feb. 9)

I really appreciate all the moral support and advice this website gives. Its conforting to reach out to others who are in the same shoes. Thank you.
vicki

02/05/2009 07:56
Wolfgang

not registered

02/05/2009 07:56
Wolfgang

not registered

Time difference

Vicky, Essen is 9 hours ahead of your time, i.e. at noon your time it would be 9 pm there. You need to call as early as possible or very late (at midnight your time it would be 9 am there).

The closest airport would probably be Dusseldorf (you can take a train from Dusseldorf airport to Essen main station) but if you get a cheap flight into Frankfurt you might take a train from there. The Frankfurt airport also has a train station.

The team of the Essen clinic are very friendly and can help with advice regarding local travelling and accomodation. Seegenschmiedt offers a 9 days treatment scheme (including 2 free days on the weekend). The daily treatment itself is short and painless, you would have lots of time to explore the area.

Wolfgang

02/05/2009 12:09
vicki

not registered

02/05/2009 12:09
vicki

not registered

Re: Recommendation for St. Augustine, FL

Hi everyone,

Wolfgang, how do I contact Seegenschmeidt Clinic? This name is not listed under the clinic in Essen. Thanks.

Vicki

02/05/2009 12:41
Wolfgang

not registered

02/05/2009 12:41
Wolfgang

not registered

Contact Essen

Hi Vicky, the name of the doctor is Seegenschmiedt, die clinic's name is Alfried Krupp Krankenhaus. You find contact details at http://www.dupuytren-online.info/radiotherapy_clinics.html

Klinik für Radioonkologie, Strahlentherapie und Nuklearmedizin, Alfried-Krupp-Krankenhaus, Alfried-Krupp-Straße 21, 45117 Essen, Germany
Contact: Tel. +49 / 201 / 434-2559 / Fax: +49 / 201 / 434-2371

Wolfgang

02/06/2009 22:53
vicki

not registered

02/06/2009 22:53
vicki

not registered

Re: Recommendation for St. Augustine, FL

Hello Everyone,

First, I spoke with Daniel at the Essen Clinic last night. It turns out Essen, Germany is 6 hours ahead of the Pacific Coast Time so I finally reached the office at 2am. Currently they are doing a 5 day treatment program and would not specify the g-ray total administered. Said it varied with each patient's needs.
They do have an apartment available for rent for the week. The treatment is going to cost 830 euro (approx. $1000USD) and the apartment is $120 for the week. Currently airfair to Dussuldorf (the closest airport) is $485 on Delta and the train costs $12 (1/2 hour trip) oneway.

Next I met with Dr. Sonopoli in St. Augustine for the MRI reading/report. Turns out the large nodule at the base of my middle finger is a ganglion cyst and showed up as a large fluid-filled sack on the MRI. But, directly below (in the middle of my palm) was a nodule and cord of DC. And the Dr did feel two more nodules beginning to develop along the lateral of the ring finger. Dr. S said the cyst would not be affected by RT and advised me if I wanted to wait I could or since I have already planned the time and trip I might consider going ahead with the RT in Germany at this time. Haven't decided as of now but inclining to what everyone keeps saying,
("Don't wait!) and you never know what the economy will be like next year.
Thanks Wolfgang for all your help.
Vicki

02/07/2009 01:41
newman 
02/07/2009 01:41
newman 

Re: Recommendation for St. Augustine, FL

Hi Australia Calling, Hi Vicky .Information re Essen. I have been to Alfred Krupp Krankenhaus (hospital) . I generally contact Frau Giebels who is Prof Seegenschmiedt's secretary. I would point out that you wish to see the Prof. Seegenschmiedt. I found Frau Giebels very flexible in the making of appointments. The Prof. would see you one day and carry out the examination photos/ the procedure and explain any risk factors. They require at least 24 hours before any treatment is given to make sure you are in full agreement.You might factor in an appointment on the friday and the treatment takes place the following week . Have you read on the Dupuytren web page there are two protocols of treatment 7 treatments of 3 Gy(21 Gy) and two sessions of 5 treatments of 3 Gy. (30 Gy)(This means 2 trips to German about 3 months apart.) The first protocol would be less expensive. I received treatment first thing in the morning which left the rest of the day for sightseeing and travel. You should consider a German Rail Pass either first of second class which allows travel anywhere in Germany on the ICE trains. Look on Google- Deutsche Bahn ( German Rail )(site is available in English) With regards to treatment I had RT on newly developed nodules after surgery and my right hand had only 15 Gy (5X3 Gy.) If I can assist let me know..

Edited 02/07/09 03:43

02/07/2009 12:22
vicki

not registered

02/07/2009 12:22
vicki

not registered

Re: Recommendation for St. Augustine, FL

Hi Australia Calling and everyone,
Thanks for the advice on Essen. Do you know if they will do the 7 day treatment program? I already purchased my plane ticket to arrive on Sunday, (2/15) but can change the departure date to give me extra time. Its the weekend now so have to wait til Sunday night to call again. Have you gone back for the second 5-day series or are you planning to? Its nice to talk with someone who's been there.
Vicki

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