This Is MS Multiple Sclerosis Community: Knowledge & Support

[adamt]

So after a false negative catheter venogram, i now need to get treated, but im not sure which to pick between:

Dr Vogl in Garmany - costs 5200 EURO
or
Ameds Centrum in Poland (dont know wich dr) costs 4980 EURO

- costs are for testing and balloon angio

Germany would be more convenient as the hospital is close to the airport, and i think Ameds is an hours journey to the clinic from the airport.

Which would you recommend/choose?

which one is more experienced in CCSVI?

any other opinions please?


p.s i have narrowed jugulars and mid-azygos (possibly) , may thurners, and my lumbar veins are poorly developed - according to Dr Sclafani.


thanks

[esta]

hio adam
i've only been to euromed in Katowice,with Dr Simka, who has done the most in the world, with a long wait list. Newer is Amemds, which could be in Tychy, or Warsaw - i think Tychy has done it longer...i'd go to Poland, more likely trained by Simka, but thats just me....They all run around 7,000 EUR. but that includes hotel.

[frodo]

hio adam
i've only been to euromed in Katowice,with Dr Simka, who has done the most in the world, with a long wait list. Newer is Amemds, which could be in Tychy, or Warsaw - i think Tychy has done it longer...i'd go to Poland, more likely trained by Simka, but thats just me....They all run around 7,000 EUR. but that includes hotel.

Please somebody correct me if I am wrong, but I think that only Dr. Kostecky performs angioplasties in Tychy, and he has nothing to do with AMEDS.

[costumenastional]

Just wanted to say how much i love the title of this post.

I am so happy that in a matter of months we are in position to choose where we will be treated. It was only Christmas time when people were straggling and fighting for this to happen.
This is a historical paradigm shift in medicine. We made it.

Now, we fight for more than the obvious and this is huge.
Congrats to everyone.

[joge]

Why not consider Belgium?

Treatment in the best vascular hospital of Belgium, even the Belgium king himself has been treated here (angioplasty, not for CCSVI). OLV hospital in Aalst. Close to Brussels airport.

Dr. Beelen MD is performing CCSVI treatment (ballooning and if neccessary stenting). Has done,I think, around one hunderd patients now. No known problems. Part of a research project.

Costs: treatment (without stent) about 1700 euro. You have to arrange your own hotel (possible for about 85 euro a day). CT & doppler: about 300 euro.


How about that?!

[L]

Why not consider Belgium?

Treatment in the best vascular hospital of Belgium, even the Belgium king himself has been treated here (angioplasty, not for CCSVI). OLV hospital in Aalst. Close to Brussels airport.

Dr. Beelen MD is performing CCSVI treatment (ballooning and if neccessary stenting). Has done,I think, around one hunderd patients now. No known problems. Part of a research project.

Costs: treatment (without stent) about 1700 euro. You have to arrange your own hotel (possible for about 85 euro a day). CT & doppler: about 300 euro.


How about that?!

I sent a PM to check if I have the right mail address for Dr Beelan. I like Belgium!

[joge]

Roel Beelen MD
Department of cardiovascular and thoracic surgery
OLV Hospital
Moorselbaan 164
9300 Aalst
België

Tel: (0032)(0)53/724599
Email: Roel(dot)Beelen(at)olvz-aalst.be

[L]

Roel Beelen MD
Department of cardiovascular and thoracic surgery
OLV Hospital
Moorselbaan 164
9300 Aalst
België

Tel: (0032)(0)53/724599
Email: Roel(dot)Beelen(at)olvz-aalst.be

Thanks joge!

[joge]

Welcome, anytime

[danegirl]

As f<r as I have been inforned, Dr. Vogl only does one side. Charges the same again later if the other side is to be liberated too....

He says it's due to safety.

[joge]

Correct. Has something to do with pressure-changes and headaches etcetera.

Roel Beelen MD has a different opinion. He treated mij IJV's, left and right at the same time. And if I would have had other problems in the azygos or vertebral, he would have treated that in the same procedure.

I heard of several others with the same experience. I didn't have any headache, an other patient did. So...

[Indiana]

Thank you, Joge, for these brand new informations.

Do you feel any improvements since the procedure?


Indiana

[joge]

Having ppms, my expectations were low.
Beelen promised me less fatigue and better heat tolerance. I got much more...

Beter movement in my fingers (Left)
I could open my hand completely
Better balance
Better walking (no cane anymore)
Clear head, better smell, better hearing
I'm better company now
etc.

I'm still handicapt in al lot of ways, but my quality of life has improved enormous.

[joge]

Roel Beelen MD
Department of cardiovascular and thoracic surgery
OLV Hospital
Moorselbaan 164
9300 Aalst
België

Tel: (0032)(0)53/724599
Email: Roel(dot)Beelen(at)olvz-aalst.be

Thanks joge!

Some practical information:

I don't know how much time is needed between testing and treatment.
Beelen doesn't want you to fly within two weeks after treatment.

[Indiana]

:D

Having ppms, my expectations were low.
Beelen promised me less fatigue and better heat tolerance. I got much more...

Beter movement in my fingers (Left)
I could open my hand completely
Better balance
Better walking (no cane anymore)
Clear head, better smell, better hearing
I'm better company now
etc.

I'm still handicapt in al lot of ways, but my quality of life has improved enormous.

That sounds great, Joge! Congratulations!

I was asking the adress for patients living in France.
We actually have a Dr. in Paris performing the venographie and balooning, but most of the time she considers people as "untreatable".
That's why some of us are looking for other solutions.
We can go to Belgium by train, that must be less dangerous than to fly, I suppose.
Did Dr. Beelen tell you anything about travelling by train after the treatment?

Best wishes Indiana