My Frankfurt Experience

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

My Frankfurt Experience

Postby alanbrowne » Wed Mar 31, 2010 4:53 am

Hi All,

Returned from Frankfurt yesterday and all in all was a positive experience.

First had a Doppler Ultrasound performed by Dr Meyn which immediately showed narrowing of both jugular veins....what a relief :D
The colour detail of the flow was also very interesting as it highlighted the reverse flow in the veins backing up towards the brain.

He was very clear however that this was experimental etc etc but had found to date that all of the MS scans had shown narrowing, but did not know what this meant.

Then had the MRV (hate MRI's :( ) and then had to wait for several hours to see Dr Vogl to discuss the results.
The scan also showed that both veins were narrowed, the left side in particular, which is where the majority of my mobility problems are.

However, although we had previously discussed in email that I could have a procedure the next day if needed, he declined this.
They are becoming very cautious about the whole subject over there as they are under severe pressure from higher sources in the hospital who do not believe in the whole CCSVI theory.
I was told that if I still wanted to go ahead with the procedure I could make an appointment in approx 6 weeks time :(
But he would only perform this on one vein, not both (the left) and stents were not an option.

So we flew back to the UK a day early and although very happy that they found I had CCSVI a little disappointed that I could not have the procedure.

After thought I have since decided to keep my Bulgaria appointment (17th May) and have booked flights this morning :D
My main concern about Frankfurt is that they will not be allowed to continue with the screening or procedures there.

So Bulgaria here we come.....

Take care,
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Postby eric593 » Wed Mar 31, 2010 5:06 am

Glad it went well for you.

Can you please make sure you update the "doctors" sticky at the top so that it is updated that Germany is not doing treatment at this time, only diagnostics? It's important for us to keep track of what's happening and where.

Good luck in Bulgaria. That's not too long to wait at least. :)
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Postby silverbirch » Wed Mar 31, 2010 10:10 am

Hey Alan

Thankyou so much for your posting and honesty

Goodluck in Bulgaria

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