This Is MS Multiple Sclerosis Community: Knowledge & Support

Last month i had a Doppler & Venogram for CCSVI which came back negative.

But i showed Dr Sclafani my images and he diisagrees with the diagnoses and thinks my narrowings are consistant with CCSVI.

So i have found a German doctor - Dr Vogl who does venograms and procedure following Dr Hacke's protocol.

So has anyone here had testing/treatment with Dr Vogl?

How was it?

I requested skipping another venogram as its only been 2 weeks and i will send him the DVDs, but he said he has to exactly plan the catheter movement
- Dr Vogl does the venogram and procedure (ballooning) on 2 seperate days

thanks

anyone please?

Hi Adamt,
My wife has not been treated by Dr Vogl, but we have made contact with him.
She was treated in Poland in April but has now got worse so we think that the left has collapsed again and possibly they missed the azygos which is very important as Livabird has PPMS.
I did lots of research on Dr Vogl and we decided he is not right for this.
Firstly he does not treat the azygos vein so that rules him out right away for us. Secondly he does not administor anesthetic during the procedure so my wife said no way...
I know this probably doesn't help much but just though i would pass it on.
We have now got an appointment in Bulgaria where we know the azygos will be treated, in fact there a few that went to poland only to go to bulgaria afterwards.

If you do a google search on Professor T Vogl and ccsvi you should get lots of info, it should also include a link i belive to a thread here in TIMS

All

hi All,

thanks for sharing,

ive been in contact with Dr Vogl and he said he will check the Azygos vein, and will use a sedative.
- im awaiting a reply on whether he will balloon the azygos, but i would of thought if hes chcking the azygos he would balloon it too.

do you have a contact email for the bulgaria clinic you could share please?

i need to find a doctor who will check for may thurner, azygos aswell as the jugulars properly.

i need a doctor who knows exactly what to look for, as my last CT venogram, was a misdiagnoses (Dr S believes)

Hi Adamt

You need to email Prof. Grozdinski at
grozdinski@dir.bg

you can also look at the following website
http://www.tokudabolnica.bg/en/page/729 ... enter_Team

all the best

thanks, but as the bulgaria clinic is more expensive than dr vogl, i may have to stick with germany

any other thoughts /experience with dr vogl?

Hi,

I was examined by Dr. Vogl and he found a problem in my jugular vein. There are some people who had the venoplasty with him on the German CCSVI forum and they seem to be satisfied. However, he doesn't use stents and you have to make sure that he does "all the job" at once since he seems to be reluctant to treat for example both jugulars if there is a problem in both of them. And, don't be surprised if he doesn't use the word CCSVI...it soesn't exist in his vocabulary

Apart from that, he is a real professional and an excellent doctor.

Good luck!

I had a appointment set up with Dr Vogl but went instead to Bulgaria. Bulgaria is 5000 euros. The price with Dr Vogl was comparable to Bulgaria.
Bulgaria has mores expierence doing the procedure. They did 400 of their own citizens at the beginning of the year. And when you are there you will be with other MS patients that are there for the same reason you are. Plus you stay in the hospital room for at least 1 night (free). And you can stay in hospital hostel for 20 eros/night the other nights.

thank you for the replies,

its so important now that i double check that the next int radio/doctor knows exactly how to test/treat CCSVI as ive already wasted 5700EURO on a False negative


I do want to go to Dr Vogl, but the fact he wont be happy ballooning several places is ridiculous!
Why do 50% of a job, it maks no sense

I met some people in Bulgaria that nothing showed up on the ultrsound. But when the venogram was done they found stenosis.
The best doctor to treat CCSVI are the ones with the most experience. Those that have little often miss the stenosis. Poland and Bulgaria are the 2 places with the most expereince.

i mis-read the site, it is 5000euro for testing and b angio

how mny areas did they balloon? is their a limit?

which side did they enter from?
did they check for may thurner syndrome?

ive already had a negative doppler so maybe if i give them the report that will cut the cost

thanks

The price 5000 euros is for testing and angio. They entered my right side.
Found stenosis in RJugular, LJugular and Azygous. Angio in all 3 but had to put a stent in LJugular. Stents are extra 650 euros
Do not know if they check for May-Thurner syndrome
I do not think there is a limit for angio. Email them and ask.