This Is MS Multiple Sclerosis Knowledge & Support Community

Hi everybody.

My girlfriend was tested yesterday for CCSVI by Dr. Vogl in Frankfurt. The test was done using MRI and a stenosis was found in the left yugular.

I am worried still that maybe there is more things appart of the stenosis. Is MRI diagnosis reliability similar to doppler?

And by the way, has anybody here visited Dr. Vogl?

Hi all,

I went to Frankfurt on Tuesday January 26th. I also had the MRI and was diagnosed with 70% stenosis in the left Jugular.

A few people of the Dutch forum also went, and a few of them had the MRI and nothing was found. So they are a bit confused. I do not know whether that has to do with the technique, or with the fact that MRI simply does not see everything.

As I understand it now, Frankfurt is offering some sort of package: MRI + doppler. So in that case you are more assured.

By the way, I got the tip about Dr. Vogl in Frankfurt from Ana on this forum. I am still very grateful for that tip!

Inge

Inge67 wrote: As I understand it now, Frankfurt is offering some sort of package: MRI + doppler. So in that case you are more assured.

As far as I know, Dr. Vogl is offering only MRI, no Doppler. I am not sure even whether the scan is SWI processed, or whether it follows the Haacke protocol.

Hi frodo, if you go to
http://csvi-ms.net/forum/viewtopic.php? ... &start=140

"Die Frankfurter suchen auch Stenosen" you will find loads of informaiotn how the testing was done. I am a bit surprised that Dr. Meyn was not recommend to you by Prof Vogl...

Fell free to contact me also on the CSVI net Deutshcland:-)) same user name as here!
Ines
----
Husband MS

Hi Frodo,

The MRI is done following the Haacke protocol on a 1,5Tesla MRI.

What I said, doppler is currently also offered at the same date as the MRI. Perhaps you shoud contact Dr. Vogl about that. Or Dr. Michael Meyn: he is from a different department, but in the same hospital.

Good luck!

Inge

Just another question. We got a CD with the MRI images. Does anybody know what format they are in and how can be viewed?

I think there is a runviewer.bat file on it. I just clicked run in the windowsmenu and selected this file. Then it started automatically.

I think it is in dicom format, which can be viewed with viewers that support dicom.

Hopefully this helps a bit. It is hard to explain in text when you do not have the pc in Front of you...

Inge

I think, once you have found one stenosis as you have, the next step is a venogram (invasive). This should turn up more if more are there. Yes, I would think two is likely, since that's how Zamboni defined CCSVI.

Well, thanks again to everybody. I will try to get a venogram now using the images. It seems from wikipedia that DICOM is just a container for standard formats like jpg and such. Probably there will be no problems reading the disk.

Can I ask what a venogram is precisely?

What I gathered was the next step for me ballooning?

What can a venogram tell me more than I already know from the MRI?

Thanks,
Inge

Inge67 wrote:Can I ask what a venogram is precisely?

What I gathered was the next step for me ballooning?

What can a venogram tell me more than I already know from the MRI?

Thanks,
Inge

As far as I know, it is a map of your veins. They inject dye into your blood stream and with a CT (X-rays based) they make a 3-D map of the flow.

But as always I am speaking of something that I am not sure. It woudl be good if somebody else could confirm or deny what I have just said.

WIKI: "..Venography (also called phlebography) is a procedure in which an x-ray of the veins, a venogram, is taken after a special dye is injected into the bone marrow or veins. It is the Gold standard for diagnosing acute deep venous thrombosis and chronic cerebrospinal venous insufficiency although its use has been largely supplanted by the less invasive duplex ultrasonography.

Venography can also be used to distinguish blood clots from obstructions in the veins, to evaluate congenital vein problems, to see how the deep leg vein valves are working, or to identify a vein for arterial bypass grafting.

Areas of the venous system performed include lower extremities, [Inferior vena cava], upper extremities..."

Best
muse http://www.csvi-ms-net/en

And while they do the venography, they can use ballons or put in stents, if it isn't complicated.

After the diagnosis, my girlfriend and I are thinking whether it is worthy to go back to Germany for surgery when there are a lot of vascular surgeons in our home country. Besides, I don't think that is a good idea to travel in that condition.

What would you recomend? Is it better to trust somebody with experience in CCSVI like Dr. Vogl? or is the surgery instead just for a stenosis, and therefore the surgeon does not have to be aware of CCSVI?

Hi,

My brother has an appointment with dr Vogl on Monday...

I am really glad I was able to find this forum as I am not sure of his experience in diagnosing & performing the vascular surgery necessary to treat CCSVI.

Please if someone could walk me though what they did from day one till they left after the surgery. How long did the whole process take? and any information.

I tried to contact Dr Vogl by e-mail and phone but he was giving me minimum answers so things are still not very clear to me!