Franks CCSVI log - @Prof. Vogl Frankfurt

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

Franks CCSVI log - @Prof. Vogl Frankfurt

Postby Frank » Wed Jul 28, 2010 1:37 pm

Today I arranged my appointment for CCSVI diagnosis with Prof. Vogl in Frankfurt (Germany) - its scheduled for the 30th of August. So the waiting list is not that long, which is nice on the one hand but considering that Prof Vogl (he is head of IR) should have a very tight schedule even apart from CCSVI it might indicate that he does not have that much patients requesting CCSVI diagnosis - and might therefor not be specially experienced in CCSVI.

Anyway, I live pretty close to Frankfurt and I wanted to have at least some idea about my CCSVI status before I might make a decision about what drug I might consider in the future.
I'm currently (since five month) off Tysabri after I had 24 infusions and I think about starting Cladribin or Glinea (FTY-720) in the near future.

If there is any hint or advice whatsoever that might help me to get the best/most reliable result out of the diagnostic appointment (either from people who already met Prof. Vogl or others) it would be highly appreciated.

--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 panAmerica » Thu Jul 29, 2010 12:26 am

dear frank,
i think you were just lucky to get such an early appointment. I got mine weeks ago for september. So i hope to read more after your appt.
Greets pan
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Postby Frank » Mon Aug 09, 2010 2:01 pm

My examination appointment was shifted to 7. Sept because Dr. Meyn (the on doing the ultrasound) is on holiday from 30th Aug to 5th Sept.

Arranging an appointment with Prof Vogl was quite easy via email, but from my experience its a real problem to reach Dr. Meyn.
My emails to him never got answered until I asked Prof Vogl to personally ask Dr. Meyn to reply...

--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 L » Mon Aug 09, 2010 4:51 pm

Hey Frank. What are people saying on the German speaking MS forums about the Frankfurt experience?
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Postby Frank » Tue Aug 10, 2010 2:34 am

The only German form I am reading is csvi-ms.net/forum.
Most people there seem to be happy altogether - especially with the professionalism of Prof Vogl and Dr. Meyn.
But there are many complains about the set-up. Arranging appointments is a hassle and when you go to Frankfurt be sure to have loooots of time some people report they had the appointment scheduled for 1200 and leave the hospital at 2200.

So everything seems a bit overloaded there but when comes to the quality of examination or treatment the report of most people are positive - this might probably also be to some extend be due to the fact that disappointed people dont report as frequently as people who were happy with the outcome.

--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 L » Tue Aug 10, 2010 4:29 am

Thanks Frank. I heard that he treats both jugular veins independently, in separate procedures. Is this actually the case?
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Postby Frank » Tue Aug 10, 2010 7:08 am

I didnt hear about that and I also cant see a good reason why he would do that.
What I did hear is that he is quite hesitant to do the examination and the procedure in one visit/day - he wants the patient to carefully think about what should be done.

--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 L » Tue Aug 10, 2010 7:13 am

Frank wrote:I didnt hear about that and I also cant see a good reason why he would do that.
What I did hear is that he is quite hesitant to do the examination and the procedure in one visit/day - he wants the patient to carefully think about what should be done.

--Frank


Someone posted that a few weeks back, can't remember who. I can't see any reason for doing it. It must just be a rumour.. Thanks anyway.
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Postby Frank » Wed Aug 11, 2010 2:17 am

I just came accross a report of a ccsvi patient in Frankfurt whos jugulars where both opened in one surgery:
http://www.msrc.co.uk/index.cfm/fuseact ... ageid/3022

--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 L » Wed Aug 11, 2010 6:09 am

Frank wrote:I just came accross a report of a ccsvi patient in Frankfurt whos jugulars where both opened in one surgery:
http://www.msrc.co.uk/index.cfm/fuseact ... ageid/3022

--Frank


Great, thanks. I wonder where that rumour started? A rival IR spreading disinformation??
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Postby ttt1 » Wed Aug 11, 2010 10:55 am

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Postby frodo » Thu Aug 12, 2010 5:18 am

L wrote:
Frank wrote:I just came accross a report of a ccsvi patient in Frankfurt whos jugulars where both opened in one surgery:
http://www.msrc.co.uk/index.cfm/fuseact ... ageid/3022

--Frank


Great, thanks. I wonder where that rumour started? A rival IR spreading disinformation??


I have read somewhere that he never puts two stents at the same time, to prevent that one changes the conditions on the other. Maybe this was the origin of the confusion.
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Postby L » Thu Aug 12, 2010 6:14 am

frodo wrote:
L wrote:
Frank wrote:I just came accross a report of a ccsvi patient in Frankfurt whos jugulars where both opened in one surgery:
http://www.msrc.co.uk/index.cfm/fuseact ... ageid/3022

--Frank


Great, thanks. I wonder where that rumour started? A rival IR spreading disinformation??


I have read somewhere that he never puts two stents at the same time, to prevent that one changes the conditions on the other. Maybe this was the origin of the confusion.


That makes sense.
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Postby ttt1 » Thu Aug 12, 2010 7:10 am

frodo wrote:I have read somewhere that he never puts two stents at the same time


Many posts on this forum say he doesn't use stents.
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Postby frodo » Thu Aug 12, 2010 7:58 am

ttt1 wrote:
frodo wrote:I have read somewhere that he never puts two stents at the same time


Many posts on this forum say he doesn't use stents.


It seems so. I was wrong. Sorry.
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