QUICK - need info about Germany CCSVI patients!

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

QUICK - need info about Germany CCSVI patients!

Postby Villagemaid » Mon Apr 19, 2010 8:13 am

Wow...I just got an email from Dr. Vogl in Germany saying that he could schedule an appointment for MAY 25th....yikes.....

The email is quite vague, as in saying that he could perform the tests and then we would go from there upon the findings.

Any information from people who have Dr. Vogl treat them would be great - do they also have some sort of Surgical Tourism or would I have to arrange everything myself?

THANKS - I'm pumped!!!
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
User avatar
Villagemaid
Family Elder
 
Posts: 198
Joined: Sun Mar 14, 2010 4:00 pm
Location: BC, Canada

Advertisement

Postby William57 » Mon Apr 19, 2010 9:31 am

Hi Villagemaid,

to start with your question: there is no touristic package deal. You have to arrange everything yourself.

Dr. Vogl is an experienced surgeon, but we have some question marks. According to our findings dr. Vogl does not include scanning the azygos. I think that is a serious shortcoming.

Furthermore be sure you have an appointment as well with dr. Meyn. He is the man whom does the doppler scans. For some reason, the two drs have no shared agenda. So be sure you have two appointments at the same day (one for dr. Meyn, one for dr. Vogl).

Be sure in which building you have to be. The clinic a get together of several buildings that are wide spread over the site.

Dr. Vogl is a researcher. He is not interested in your stories to put it blundly. He searches for the problem and then he tries to fix it. Do not expect long explaining stories coming from his side.

Ask one question per email. In general, he does not give answer more than one line.

The address of dr. Meyn is:

Universitätsklinik Frankfurt
Abt. Gefäßchirurgie
Dr. Meyn
Theodor Stern Kai 7
60590 Frankfurt

Tel : 069-6301 1
gefaesschirurgie@kgu.de
Last edited by William57 on Mon Apr 19, 2010 1:02 pm, edited 1 time in total.
User avatar
William57
Getting to Know You...
 
Posts: 24
Joined: Sat Jan 16, 2010 4:00 pm
Location: The Netherlands, Europe

Postby merida » Mon Apr 19, 2010 10:49 am

Hi there,

We are also booked to see Dr. Vogl for May 10th but we've decided not to go.

His answers were not satisfactory and it's questionable if he will perform the procedure. There was a gentleman from England that went to see him and only received an MRV and Doppler as the Doctor declined to do angioplasty. He never mentioned this in his email.

There was also a patient from Canada who saw him and it appears that the veins restenosised shortly after the procedure. Needless to say that can be an expensive issue if you are travelling from afar and need to return for treatment.

Bottom line is that I just didn't get a warm and fuzzy on this one. We are on the list for Poland, Dr. Sclafani and Albany and feel more comfortable waiting than rushing into something that doesn't look very well organized.

Sorry to put a damper on your excitement. :( If it's any help we felt the same let down.
User avatar
merida
Getting to Know You...
 
Posts: 14
Joined: Thu Dec 03, 2009 4:00 pm

Postby Villagemaid » Mon Apr 19, 2010 1:02 pm

Thank you both for your replies.........it just reinforces what my gut was telling me.....

I am still on the waitlist for Bulgaria in the fall, and also in Poland for 2011....so I think I will stick with that - so many positive stories from others.

Thanks for your input! Appreciated!!
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
User avatar
Villagemaid
Family Elder
 
Posts: 198
Joined: Sun Mar 14, 2010 4:00 pm
Location: BC, Canada

Postby alanbrowne » Tue Apr 20, 2010 8:09 am

Hi,
Sorry, I've only just seen this thread.
I went to Frankfurt at the beginning of this month and had a Doppler with Dr Meyn and a MRV with Dr Vogl.
Both showed CCSVI in both jugulars, worse on the left, but no scanning in the chest.
However, he declined to do any procedure until at least 6 weeks after, although we had previously agreed to do it the next day in email conversations.
So was left feeling excited that I had CCSVI but disappointed that he would not do the procedure.
Luckily I have an appointment in Bulgaria in 4 weeks time :D

Hope that helps,
Alan
User avatar
alanbrowne
Family Member
 
Posts: 78
Joined: Mon Feb 15, 2010 4:00 pm
Location: Milton Keynes, UK

Postby Villagemaid » Tue Apr 20, 2010 8:24 am

Wow Alan - that's a roller coaster ride. To find out you have it, hoping to fix it, and then be told to wait.

At least you will be getting it done in Bulgaria soon!

ALL THE BEST!!!! (my turn is in October).

-VM-
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
User avatar
Villagemaid
Family Elder
 
Posts: 198
Joined: Sun Mar 14, 2010 4:00 pm
Location: BC, Canada

dr.vogl Frankfurt

Postby dewey » Fri May 07, 2010 2:03 pm

Hi:

I have an appointment with Dr. Meyen and Vogl on May 18th. I will be flying to Germany from Nova Scotia, Canada. My husband is German so he spoke with Dr. Vogl personally. My husband made it clear that we were travelling a long distance and would need to do everything within a 2 week period. DR. Vogl said that I would need to do testing and then discuss finding. If anything needs to be done it would be done while I was in Germany for the 2 weeks.

I am hoping for good thngs and will keep you all posted.
User avatar
dewey
Newbie
 
Posts: 1
Joined: Thu Apr 01, 2010 3:00 pm

Postby Deena » Wed Jul 07, 2010 10:54 pm

I've been in contact with Dr. Vogl. He's been very responsive and nice. However, I read the message from someone about him not scanning the Azygos vein (I assume you mean not including it in the venography. I'm getting doppler/mrv here in USA). That is a serious negative if that's true.

The price is very competitive as well, and the waitlist is short. He requires a follow-up visit after six months- not as much as other places.

My only concern is that he does not use stents- I sense this is his general policy.
User avatar
Deena
Getting to Know You...
 
Posts: 10
Joined: Wed Jun 30, 2010 3:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service