Where's the best place to travel to for CCSVI?

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

Where's the best place to travel to for CCSVI?

Postby mht220 » Sat May 01, 2010 11:02 pm

any suggestions on a country to travel to, for CCSVI tests and perhaps for The Liberation Treatment. preferably in Europe.
somewhere that I don't have to wait really long, e.g. Poland has a waiting list till mid 2011. and somewhere where doctors are experienced in CCSVI.

or do you think that I shouldn't travel at all, for such a thing? I mean an operation ... it can have complications... isn't it naive? as some people says so

please help
thanks
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Postby Vhoenecke » Sat May 01, 2010 11:12 pm

Poland
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Postby Inge67 » Sun May 02, 2010 12:05 am

There is à commercial firm in Düsseldorf, Germany. Called Prescan ( www.prescan.nl)
They do scanning (doppler and MRV) for € 1395 and are thinking about treatment.

There is also dr. Vogl in Frankfurt, germany. He does scanning and treatment. I think cost of scanning are € 1200 and cost of treatment around € 5000.
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Postby Badger » Sun May 02, 2010 12:43 am

Katowice, Poland. :wink:
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Postby livabird » Sun May 02, 2010 1:41 am

Katowice Poland without a doubt :D
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Postby mht220 » Sun May 02, 2010 2:27 am

yes Poland is really famous in CCSVI and I want to go there but I don't think they accept new patients, they're too busy. didn't answer my email.


Inge67 wrote:There is also dr. Vogl in Frankfurt, germany. He does scanning and treatment. I think cost of scanning are € 1200 and cost of treatment around € 5000.


do you know anything about him? has he done this before? his methods? do you know anyone who has gone to dr. Vogl for treatment?

thanks a lot for you're answers
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Postby Inge67 » Sun May 02, 2010 4:07 am

Yes agreed without a doubt. But I was taking the waitinglist into consideration. These are alternatives in europe.
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Postby belsadie » Sun May 02, 2010 4:34 am

Don't know where you're from but there are a few places in the US that are gearing up for diagnosis and treatment: Kings County Radiology, Dr Sclafani, Brooklyn NY; Albany Vascular, Dr. Mehta; and Boston Med. Center. Try the first two. They're accepting patients. They're awaiting Institutional Review Board approval but hope to be moving on this soon!!!!..............PLEASE... i know how you feel.
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Postby sofia » Sun May 02, 2010 4:40 am

I only found out about the surgery in febuary this year. I only started to look into it in March. I was stuggeling of the sideeffects after Tysabri infusion, and desperate to do something about it.
I found the website http://www.multiplesclerosissurgery.com/, and started on the top B for bulgaria. I telephone, and soon got apointment, got a cancellation so I got accepted for march. I said it was urgent.
I accepted straight away.

I wouldn't have been able to wait a year. That was the most important part of my decitio, when can I have it done.

I checked into the hospital after I accepted, it seems to be a good hospital. I read through the bulgarian patients reports. I hvae now heard about three operations on forginers, that have been successful. To me that is good enough, as I do not have to wait.

Many people are very happy with the treatment they they have recievd in Poland, and they seem to be a very experienced hospital when it comes to ccsvi. That is important I suppose. In Bulgaria they haven't done quite as many operations, but the leader there has a PhD in phlebology (was that right?)

There was a post on here not long ago about a different private clinic in Poland starting up, ameds i think they were called. Maybe they don't have the longest waitinglists just yet.

I suppose it depends on how ill you are, how urgent is it. How important is it that they are experienced? Browse the web, and find out. Look into the different clincs. Good luck with it :-)
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby mht220 » Sun May 02, 2010 5:31 am

Inge67 wrote:Yes agreed without a doubt. But I was taking the waitinglist into consideration. These are alternatives in europe.

that's right, thanks, I'm looking for the the alternatives too. So you don't know/heard anything more about dr. Vogl?

belsadie, I got a form from Dr Sclafani but then i heard about IRB approval and ... it's a long way to there. thanks



sofia, so from what you gathered bulgaria is "good enough". so l have to find more about it, thanks


thanks a lot for you're answers
and good luck to all
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Postby belsadie » Sun May 02, 2010 8:20 am

Good Luck, mht..Let us know about Bulgaria ASAP. I'm sure I speak for all when I say that out thoughs and payers are with you ALL THE WAY!
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Postby cah » Sun May 02, 2010 9:01 am

mht220 wrote:that's right, thanks, I'm looking for the the alternatives too. So you don't know/heard anything more about dr. Vogl?


Although he started just a few weeks ago, he has already performed about 60 ballooning procedures. His patients mainly come from germany and the netherlands. He's not using stents.

But he's quite overrun, too... some people get calls from him at 6 am or 8 pm as this is the only time he's got the time to call.
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Postby mht220 » Sun May 02, 2010 9:45 am

cah wrote:Although he started just a few weeks ago, he has already performed about 60 ballooning procedures. His patients mainly come from germany and the netherlands. He's not using stents.

But he's quite overrun, too... some people get calls from him at 6 am or 8 pm as this is the only time he's got the time to call.


Good, Great, let's see what can I do now ... go to Germany? perhaps. thanks

belsadie wrote:I'm sure I speak for all when I say that out thoughs and payers are with you ALL THE WAY!


Thanks a lot, I really am a bit nervous and confused, everyone a round me telling me not to do this, but I wanna do something.


Thanks a lot for you're answers
Time Is Brain For us
And good luck to all
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Postby Cece » Sun May 02, 2010 10:36 am

mht220 wrote:Thanks a lot, I really am a bit nervous and confused, everyone a round me telling me not to do this, but I wanna do something.


The more I read up, the more confident I've felt...there are months worth of information here and on the web...I am sure everyone saying no has your best interests at heart but not everyone is as informed as you can be about this...I too think the U.S. options of Dr. Sclafani & Dr. Mehta are good ones because of the potential for insurance to cover treatment...best of luck!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby sofia » Sun May 02, 2010 11:22 am

hello again.

Yes I think Bulgaria is good enoug, after all I am goig there :D
I didn't mean to say that they were just good enough. Tokuda hospital is an excellent hospital, I've checked up on it. UK Bupa is cooperating with them.
I hope we will have some more patients reports on here from Bulgaria quite soon. But I think they will have quite a waiting list as well.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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