just an interesting view

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

just an interesting view

Postby costumenastional » Thu Mar 04, 2010 3:15 am

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Postby zinamaria » Thu Mar 04, 2010 10:42 am

Yes, interesting and his point about the money is a good one, his caution and questions led him to make the best decision for himself...
the only reservation I have with his presentation is HiS present condition seems to be really good, in terms of someone with MS, and I am happy to see this, for his life. He is even going to go for a walk along the sea, he says at the end of the tape...a luxury some of us do not have at the moment, not the sea, the 'walking'...

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Postby costumenastional » Thu Mar 04, 2010 10:47 pm

I get what you are saying...
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Postby Lelo » Sat Mar 06, 2010 1:15 am

I don´t agree with him. I am not loaded with money. In fact I had to go to the bank and lend money.
It´s not more than and old car, and if you suffer from ms it´s a piss in the ocean.
I didn´t like his performance and for me he could kept his mouth closed. :(
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Postby Zeureka » Sat Mar 06, 2010 4:32 am

So OK, we know what Mike would reply to my other thread on Italy. He is fully right, I went exactly through the same thoughts and feelings.

It's a pitty it alway ends up of being a money question. And not all can afford it or indeed decide to protest and not go for it, as also was my initial spontaneous reaction. I respect all decisions and situations. I go for mine and go to Poland :wink:

And will continue to fight for CCSVI however also in Italy. I will not let loose on going for further tests and show my results, as far as possible within my possibilities. They should wake up and make this available for all that want it - and at the cost that is reasonable for it !
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Postby costumenastional » Sat Mar 06, 2010 6:35 am

Lelo, i agree.
I just want to say. It should be avail, yes, to all of us, everywhere. But the cost is really high in some places and to be honest, i understand why. Of course doctors doing it, deserve our gratitude whatsoever, cause if it wasnt for them, we would wait probably for years, if ever.

On the other hand, medical "hardware" like catheters, stents or whatever dont come for free. They cost a lot of money, companies that provide them are pharmaceuticals too.
For instance, for a doctor who liberated a patient in Greece for the first time it took more than one baloons and such. It was his first time and hopefuly not his last. However the cost got high up to aproximately 12.000 in medical supplies only. Put doctors fees and hospitalization on top of this and you get around 15-16000 euros for someone who managed to do it IN HIS OWN COUNTRY!!!
In Sofia they charge you with 5000 total and the hotel accomodation is 20 euro per night or so. Way cheaper... but, do they know what exactly to look for?

In Poland they charge more, given the fact that they are ahead in knowledge i suspect...

In USA they were charging a house.

Nowhere it is for free. I know that much...
And watching the prices rise every now and then is sad.

All i know is that time is not on our side and waiting sounds a luxury we cant afford.

Or we can?

I d sure prefer to get tested before i go to another country without knowing if i have ccsvi. In Sofia they charge 3000 for diagnostics which i think is quite a price. If only there was someone here to perform a doppler i could have known my status for 200 euros. Big difference dont you think?

Anyway, what he said about Simka and the way he performed the scan on him was a bit alarming along with his other comments. That is what i kept from that video. Made me think.
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Postby Lelo » Sat Mar 06, 2010 10:28 am

I think we had the same thoughts about the costs. In Sweden the cost for just one Mri is 3000 euro. But with our Healtcare system it would only cost 30 euro for me. But the problem we have with our healthcare system that nobody takes any initative to go for something new.
Public Healt Care is available for everybody. Thats good. But I can se the problems to invite a process like endovascular treatment it need to be private clinics who take the first step.

And to read comments about CCSVI from so called specialists in Sweden, makes me feel like......

When I am able to kick some asses I gonna kick them real hard :x
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Postby Zeureka » Sat Mar 06, 2010 11:42 am

costumenastional wrote:Anyway, what he said about Simka and the way he performed the scan on him was a bit alarming along with his other comments. That is what i kept from that video. Made me think.

It is not alarming if you hear my version. True, I had a bit a same feeling when came back from Poland (also thought strange that Simka had only performed doppler in one position and found my left jugular valve problem so quickly). But then went to Ferrara for a second time doppler by the Zamboni team in the way that is recommended by the protocol (supine + other position etc.), and they found EXACTLY the same left jugular stenosis due to a pathologic valve. So this made me think: I have been too suspiscious...Simka just knew exactly where to look and found the problem, since he already had experience on where to look !

Simka charged me 50 Euro for the doppler at the time. Ferrara 150 Euro.

But I do not blame anyone, it is normal that one can be sceptical, I have been as well in start.
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Postby Zeureka » Sat Mar 06, 2010 11:47 am

Lelo wrote:And to read comments about CCSVI from so called specialists in Sweden, makes me feel like......

When I am able to kick some asses I gonna kick them real hard :x

Fully understand - would like to do same for the so-called specialists in Belgium and the neuros in Germany :twisted:
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Postby L » Sat Mar 06, 2010 6:07 pm

I haven't much of an idea if the suggestions in the video might have some truth in them. I'm inclined to think not since Simka started performing this treatment quite some time before CCSVI became such big news and patients were clamouring for treatment (I'm not surprised that he found your stenosis so quickly Zeureka, he must have had lots and lots of practice by now!) But people with MS are very vulnerable. It's such a tricky illness, so difficult to pin down that someone saying the right things can easily manipulate us. If I were a conman and I knew about CCSVI, well, I'd set up a clinic. And clinics are popping up. So be cautious!

I am so trusting myself, I wouldn't have imagined that this sort of thing were possible had I not heard about the fake Dutch stem cell clinics. They are living in South America now, the husband and wife who owned those clinics, and they are very rich. And lots of people with MS (and other conditions) are poorer but not better.

(Perhaps people might be especially vulnerable because some may feel as though they have their backs against the wall and be so focused on defending CCSVI against the establishment that they will readily trust anyone who claims to be a proponent of the theory.)
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Postby Zeureka » Sun Mar 07, 2010 9:16 am

L wrote:And lots of people with MS (and other conditions) are poorer but not better.

(Perhaps people might be especially vulnerable because some may feel as though they have their backs against the wall and be so focused on defending CCSVI against the establishment that they will readily trust anyone who claims to be a proponent of the theory.)

In terms of "not better" would not think one can compare stem-sell-therapy with CCSVI after having read or seen on videos the numerous recorded testimonials on perceived improvements after CCSVI intervention (from Zamboni's, Simka's and other patients). Also a Zamboni study paper reports about the improvements monitored in his patients. Placebo effect or all these people? I doubt it strongly...

Of couse is not a miracle effect and Zamboni explains this very nicely in the recent Italian TV spot of TG2 Medicina33, where he says:
"Improvements depend on the state of the disease - we cannot expect miracles - it is not that s.o will stand up from the wheelchair and walk - they can however expect to perceive an increase in quality of life. Improvements can also be monitored in initial phases with a significant decrease of relapses and improvements visible with MRI" And Fancesca reports improvements related to sensibility, eye sight, slight motoric improvements, like better walking for a leg and dancing again now.
http://www.youtube.com/watch?v=qDVJV3oK ... re=related

In addition, many testimonials report about decreased fatigue.

As regards trusting "anyone who claims to be a proponent of the theory" would not preceive that the Poland Katowice expert team can belong to this category, as they are together with Dake and others, the first that developed and applied CCSVI treatment after Zamboni's findings and should therefore currently be - as far as is possible for now - be one of the most experienced teams with the latter.

Please also note that "Simka" is not doing the interventions himself (he only did doppler at Euromedic in the past), but a team of vascular intervention specialists with whom he cooperates at another hospital in Katowice is performing this (with Dr Lugjar being one of them). Also the MRV included in the pre-intervention package, is not performed by Simka's Euromedic, but another specialist Dr in Katowice.

That the price has been raised is appalling as certainly on the back of people for which time is precious - and I was upset as well at first, but the concept of offer and demand is unfortunately a well-known one to all of us :( I guess the team as a whole realised that the cost could be raised and also that certain additional staff and equipment costs had to be added. And they certainly concluded that a higher profit-margin could then in addition generally be taken in the current situation.

People can still refuse, like Mike, and decide to wait 2 years, and follow the official route that the politics currently impose on us (politics saying: further research needed to confirm that CCSVI intervention is safe and beneficial + need to wait that new techniques developed). Although I am in particular sad for those that are more progressed and really have little time to wait...
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Postby L » Sun Mar 07, 2010 9:46 am

Zeureka wrote:
L wrote:And lots of people with MS (and other conditions) are poorer but not better.

(Perhaps people might be especially vulnerable because some may feel as though they have their backs against the wall and be so focused on defending CCSVI against the establishment that they will readily trust anyone who claims to be a proponent of the theory.)

In terms of "not better" would not think one can compare stem-sell-therapy with CCSVI after having read or seen on videos the numerous recorded testimonials on perceived improvements after CCSVI intervention (from Zamboni's, Simka's and other patients). Also a Zamboni study paper reports about the improvements monitored in his patients. Placebo effect or all these people? I doubt it strongly...

Of couse is not a miracle effect and Zamboni explains this very nicely in the recent Italian TV spot of TG2 Medicina33, where he says:
"Improvements depend on the state of the disease - we cannot expect miracles - it is not that s.o will stand up from the wheelchair and walk - they can however expect to perceive an increase in quality of life. Improvements can also be monitored in initial phases with a significant decrease of relapses and improvements visible with MRI" And Fancesca reports improvements related to sensibility, eye sight, slight motoric improvements, like better walking for a leg and dancing again now.
http://www.youtube.com/watch?v=qDVJV3oK ... re=related

In addition, many testimonials report about decreased fatigue.

As regards trusting "anyone who claims to be a proponent of the theory" would not preceive that the Poland Katowice expert team can belong to this category, as they are together with Dake and others, the first that developed and applied CCSVI treatment after Zamboni's findings and should therefore currently be - as far as is possible for now - be one of the most experienced teams with the latter.

Please also note that "Simka" is not doing the interventions himself (he only did doppler at Euromedic in the past), but a team of vascular intervention specialists with whom he cooperates at another hospital in Katowice is performing this (with Dr Lugjar being one of them). Also the MRV included in the pre-intervention package, is not performed by Simka's Euromedic, but another specialist Dr in Katowice.

That the price has been raised is appalling as certainly on the back of people for which time is precious - and I was upset as well at first, but the concept of offer and demand is unfortunately a well-known one to all of us :( I guess the team as a whole realised that the cost could be raised and also that certain additional staff and equipment costs had to be added. And they certainly concluded that a higher profit-margin could then in addition generally be taken in the current situation.

People can still refuse, like Mike, and decide to wait 2 years, and follow the official route that the politics currently impose on us (politics saying: further research needed to confirm that CCSVI intervention is safe and beneficial + need to wait that new techniques developed). Although I am in particular sad for those that are more progressed and really have little time to wait...


I think that you misunderstood me completely.. :)

I was saying that I wouldn't be surprised if sham clinics spring up now. I wasn't doubting the sacred theory. I am a convert after all. Perhaps I didn't word my message clearly enough?

There will be lots more clinics opening. One opens at the end of the year in the UK,one opened in Bulgaria and there will be more and I should imagine that not all of them will be genuine.
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Postby Zeureka » Sun Mar 07, 2010 10:05 am

Understood L :D, maybe I just liked to summarise a few things. My post more related to further thoughts on Mike's YouTube as regards higher costs and his expressed doubts on Simka than to your comment in end.
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Postby L » Sun Mar 07, 2010 10:09 am

Zeureka wrote:Understood L :D, maybe I just liked to summarise a few things. My post more related to further thoughts on Mike's YouTube as regards higher costs and his expressed doubts on Simka than to your comment in end.


Sure thing. Sorry Zeureka, I'm feeling a bit out of sorts and touchy today after a sleepless night..
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Postby Zeureka » Sun Mar 07, 2010 10:15 am

Know that feeling ... don't worry :wink:
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