This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Alan,

My brother didn't end up going to see Dr. Vogl. He was still going through an attack and it was recommended to wait until its over to get the testing and treatment done.

Let us know how it goes. Wish you best of luck!

Nano wrote:Hi Alan,

My brother didn't end up going to see Dr. Vogl. He was still going through an attack and it was recommended to wait until its over to get the testing and treatment done.

Let us know how it goes. Wish you best of luck!

Hi,
Sorry to hear that.
Will post all the information once I return.
Alan

That's interesting, because one of Zamboni's points was that some of the patients in ER(having an attack) were given the liberation treatment, and it halted the attack.

Thanks so much to everyone that is sharing information.

whyRwehere wrote:That's interesting, because one of Zamboni's points was that some of the patients in ER(having an attack) were given the liberation treatment, and it halted the attack.

Exactly! Oh man, that's disappointing that the opportunity was missed. But hopefully it will all work out well in the end.

Have an appointment with Dr Vogl at the end of March and have also been contacted by Dr Meyn in Frankfurt.
I now have a Doppler ultrasound appointment at 1.00pm followed by an MRI at 2.00pm with possible interventional procedure the next day

Only 2 weeks to go...how excited am I

Hi Alan and Nano!

How did you get access to Dr Vogl? I sent him an e-mail in German and only received a standard e-mail reply in English (!) on the three CCSVI steps they offer - MRV and invasive pressure measurements/balloon dilatation (and stenting only as very last step, guess only if appropriate).

I called the Secretariat and they told me to request appointment they only accept written requests with background material to be sent by post. So I edited a letter to Dr Vogl today, attaching my Ferrara eco-doppler result.

I now only received cost indication from Secretariat on phone for MRV of 1200 Euro. Do you maybe receive cost indications for further steps (eg Angiography and potential intervention costs)? I am just in process of evaluating and comparing treatment options in different places.

S.o. that knows more can also send me a private msg reply if this goes too much into specific details here...

Thanks

Steffi

Zeureka wrote:Hi Alan and Nano!

How did you get access to Dr Vogl? I sent him an e-mail in German and only received a standard e-mail reply in English (!) on the three CCSVI steps they offer - MRV and invasive pressure measurements/balloon dilatation (and stenting only as very last step, guess only if appropriate).

I called the Secretariat and they told me to request appointment they only accept written requests with background material to be sent by post. So I edited a letter to Dr Vogl today, attaching my Ferrara eco-doppler result.

I now only received cost indication from Secretariat on phone for MRV of 1200 Euro. Do you maybe receive cost indications for further steps (eg Angiography and potential intervention costs)? I am just in process of evaluating and comparing treatment options in different places.

S.o. that knows more can also send me a private msg reply if this goes too much into specific details here...

Thanks

Steffi

Hi Steffi,
I arranged my appointment with him and got all the details just by email.
He is very brief with his emails but gets straight to the point.
I got the same cost for the MRI, and approx 5000 Euros for intervention costs, more expensive then Bulgaria, but as I can get this a lot quicker that's fine by me
Hope that helps,
Alan

Thanks Alan, seems he changed his policy then...I guess he gets bombarded by e-mails now (similar as Simka at some stage) and therefore e-mailed me a standard reply. I do not mind as was told possibility to contact by mailing a letter and ask some questions - maybe a right approach to filter.

Hi Steffi,

I just finished writing you a reply but it just disappeared

When I first contacted Dr Vogl I was really happy to recieve a prompt reply from him although it was very very brief. I emailed him a few other times with some questions and each time he would reply briefly aagain leaving alot of my questions unanswered including the price and the time to required to stay there. It was important for me to know as we were planning to come all the way fom Canada.

I tried calling him a couple of times and both times I felt like he was in a rush so I wasnt able to get all the answers I needed. That's when I tried to get answers online from people who have met him or spoke to him... you probably already read all the replies I got.

We didnt end up going because we were told that its not preferable to get the testing done and treatment while passing throgh an attack... maybe it applies for research purposes only, I am not sure! and we were worried my brother's condition would get worst while travelling there.

It's really good to hear that Dr Vogl is changing his way... The standard reply you got from him has more information than what I got from him in all my e-mails and calls!

I have no doubt that dr Vogl is a very good dr but it would have helped me a lot to be able to get answers. Please do let us know how it goes with you, I am sure it will help a lot of people.

Best of luck to you ;)

Thanks Nano, and wish your brother recovers soon! A pity though, as really, there was a testimonial from a Zamboni patient that stated his attack disappeared completely when intervention done on him in that moment! No cortisone needed...

Here his e-mail reply, in case anyone interested. I've now sent him a letter with my Ferrara doppler scan pics just to hear his view on my case and also since think good these profs get also positive doppler scans in hands. But not sure yet that would go to Frankfurt, as am on list in Poland (and as now understand the costs are similar). However, should Dr Vogl reply to my letter and there would be something interesting new to report about, I will post you for info.

Found it funny that he considers to be sorry for a positive CCSVI doppler result

"thanks i am so sorry to hear

currently our concept is the following

ad1 we perform a contrastenhanced MR venogram here and then discuss the findings and correltate it to the clinical course

ad2 in case of pathology: we discuss experimental invasive pressure measurements and balloon dilatation in one or two sessions

ad3 stenting is the very last step

it has to be pronouced that still all is under experimental conditions

yours

thomas J: Vogl"