CCSVI Treatment in Frankfurt Help and advice needed

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI Treatment in Frankfurt Help and advice needed

Postby Beefyd » Thu May 20, 2010 8:27 am

Hi there, to anyone who has any info on the above please pm me. Mt sister (31 years old) is due to fly out for treatment on the 23rd June 2010 as she has just been tested as it shows her veins are twisted and she has lesions. I am worried about her having this procedure done, does anyone know or has anyone had this treatement done at this hospital?
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Postby sumsum » Thu May 20, 2010 10:59 am

Hi,

I am having my appointment at Frankfurt on June 7th (just the scan, not the operation). Since I am German, I am reading quite a lot on the German CCSVI forum. However, Germans are unfortunately not that outspoken...I would really appreciate a little bit more info on that forum.

However, some people post their experiences and they are very good. Prof. Vogl and Dr. Meyn are professionals, so need to worry in that sense! :D
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Postby coin » Thu May 20, 2010 11:40 am

Hi just posted you call fro help in the German forum...hope somebody comes back to you! But I can second what SUMSUM said, most or almos all reports from Frankfurt sound good. Even so Dr. Vogl is obviously not super enthusiastic about CCSVI, quite sceptical, but at the same time performs the test as weel as procedure, only "balloning" no stent, as far as I know.
Good luck and all the best
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Postby cah » Thu May 20, 2010 12:04 pm

Perhaps it would be easier to help if we knew exactly what the question is... what do you want to know?
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Frankfurt and dr. Vogl

Postby ankro » Thu May 20, 2010 1:14 pm

Hi
I am a Norwegian girl who had the liberation treatment done in Frankfurt 27th of April 2010. It was very painful, because they didn`t use any local anesthesia. they opened my right jugular vein with a balloon ( it was between 30 - 50 % narrowed. It is three weeks ago and I can really feel that something has changed. the germans are skilled and good at what they do, but they don`t use much time comforting their patients.
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Frankfurt and dr. Vogl

Postby ankro » Thu May 20, 2010 1:14 pm

Hi
I am a Norwegian girl who had the liberation treatment done in Frankfurt 27th of April 2010. It was very painful, because they didn`t use any local anesthesia. they opened my right jugular vein with a balloon ( it was between 30 - 50 % narrowed. It is three weeks ago and I can really feel that something has changed. the germans are skilled and good at what they do, but they don`t use much time comforting their patients.
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Postby Frank » Thu May 20, 2010 5:07 pm

How does Dr. Vogel do the CCSVI diagnosis? Ultrasound of jugular AND azygos? Does he do a venography for further evaluation? Do they do a MRV - 1.5 Tesla or 3 Tesla? How did Dr. Vogel learn how to diagnose CCSVI? Did he do any training with Dr. Zamboni?

Thanks!
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby sumsum » Thu May 20, 2010 9:39 pm

As far as I know they do the doppler and the MRV according to Haacke (I guess it's 3 Tesla, but not sure of that). It seems that they have become quite good at finding the stenoses and venous abnormalities (contrary to Offenbach where they also propose the test, but fail to see the actual problem - at least that's what's being said on the Germn CCSVI forum).
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Postby Daisy3 » Fri May 21, 2010 3:47 am

How do you make an appointment with Dr Vogl?

Thanks guys!
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Postby cah » Fri May 21, 2010 4:36 am

This is his adress:

Universitaetsklinik Frankfurt
Institut fuer Diagnostische und Interventionelle Neuroradiologie
Prof. Vogl
Theodor Stern Kai 7
D-60590 Frankfurt (Germany)

Phone: +49 69-6301 7277

Email:
t.vogl@em.uni-frankfurt.de
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Daisy3 » Fri May 21, 2010 4:37 am

cah wrote:This is his adress:

Universitaetsklinik Frankfurt
Institut fuer Diagnostische und Interventionelle Neuroradiologie
Prof. Vogl
Theodor Stern Kai 7
D-60590 Frankfurt (Germany)

Phone: +49 69-6301 7277

Email:
t.vogl@em.uni-frankfurt.de


Thank you!
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