CCSVI and Slovakia, Europe

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

Postby peekaboo » Sat Aug 08, 2009 1:55 pm

Rokkit - not at all! go for it plus travel in a different part of the world. The only concern is what would you do if you have stenosis or occlusion? Do I remember correctly that Dr D has reccommended a vascular guy in NY?

P.S Erika great post w/ dr Simka findings thanks for sharing!
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Postby mrhodes40 » Sat Aug 08, 2009 3:43 pm

And most likely an examiner who was not familiar with hemodynamic venous sonography (assessment of function - and not only of anatomy) will find nothing but a mild stenosis in your right internal jugular vein. Thus, the result of examination would be as follows:

...snip...

There is a maintained flow through vertebral veins and there is no reflux in the assessed veins.

but in reality................................

No stenosis or occlusion were found in left jugular vein. Yet, at the entire length of the vein there is a reflux, which follows the breathing, and the reflux time is 0.2-0.4 s. There is significant (!!!) asymmetry of the volumes of blood flowing through internal jugular veins. In the supine position the flow volume in the right vein is ~300 ml/min, while in left jugular vein it is ~18 ml/min. Moreover, right jugular vein in the sitting position collapses only partially.

There is a maintained flow through vertebral veins, both in the supine and sitting positions, and there is no reflux in the assessed veins. Yet, in the supine position the flow through right vertebral vein is excessive.

Deep cerebral veins - there is an asymmetry of flow: the flow through the veins of right hemisphere is significantly larger than that at left side. In addition, flow through the veins at right side is cyclic, following the breathing.


Clearly Dr Simka is looking at a scan with new knowledge and understanding compared to what is common knowledge.

And THAT my dear TIMS friends is why we keep getting "normal" findings in MS sonograms in the US when people are seen to reflux 100% of the time in Zamboni's work...and he can detect the MS patient from the controls even when blinded.

Clearly these skilled people have understood and applied new findings effectively. Erika I am so happy you got to see Dr Simka, what good fortune for you. I had to drive 15 hours to get to stanford, we made a trip of it though. :wink:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby ErikaSlovakia » Sat Aug 08, 2009 10:53 pm

Rokkit wrote:
ErikaSlovakia wrote:Yet, there are only few doctors familiar with such sophisticated venous sonograp ahy, though. and you can find them mostly in Europe. This may explain problems with proper sonographic testing in American patients.


Of course I had to check flights. Apparently you can fly round trip from NYC to Warsaw for around $600, which is astounding in itself. Would I be crazy to get a sonography from Dr Simka?

Rokkit

Just try it, I do not think it is crazy. Hotel Arena was pretty good and not very expensive and it was close to the hospital. I was even able to walk ther with my cane of course. The hotel: http://hotelarena.com.pl/arena/index_en.php
Take a bus from Warsw to Katowice and you can go by train only 15 minutes from Katowice to Tychy. There are always Taxies in front of the train station. The town Tychy is not very big. It is better if you have the polish money with you. If you need more info, do not hesitate to contact me.
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Postby Sharon » Sun Aug 09, 2009 6:26 am

Erika -
Dr. Simka's report was very interesting to read -- thank you for sharing.

Sharon
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Postby ErikaSlovakia » Sun Aug 09, 2009 11:15 am

As you know, I am looking for the phlebography. I have sent an email also to Dr. Dobrocky, PhD, MSc - radiology in Vienna.

He answers in Slovak: "Test of the venous system is also possible with non-invasive MR phlebography. It is possible to do it here in Vienna."

I have his contact, so if you need it just let me know.

I hope to know tomorrow if I can do the phlebography in Slovakia. I just do not think the do non-invasive MR phlebography. But the normal way is not that bad.
I will not have to pay for it in Slovakia.
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Postby ErikaSlovakia » Mon Aug 10, 2009 5:28 am

Well, everything goes better than perfect!
My GP was really excited about it, she gave me written recommendation to go to see the surgeon - specialist for veins in my town. He was also very excited, he gave me immidiatelly written recommendation for any hospital in Slovakia for the phlebography. It means my insurance company will pay for it.

Dr. Simka just sent me an email with name of Slovak Number 1 specialist for angiology - prof. Stetinova. He knows her. Well, she is on holiday, but I have talked to a nurse to get an appointment, she was also very excited about it and I can come this Wednesday to see her and to talk about the phlebography. She even new something about it! I could not beleive it.
I have an appointment with my neurologist in the same hospital in Bratislava anyway, so I will do 2 thinks.
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Postby Sharon » Mon Aug 10, 2009 6:21 am

Erika - what great news for you!
you wrote:
prof. Stetinova. He knows her. Well, she is on holiday, but I have talked to a nurse to get an appointment, she was also very excited about it and I can come this Wednesday to see her and to talk about the phlebography. She even new something about it! I could not beleive it.


Let's hope that more and more doctors are becoming aware of the research --I would love to see a Wall Street Journal article in the Health Section soon after Zamboni's symposium in September.
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Postby ErikaSlovakia » Mon Aug 10, 2009 6:30 am

The price for the non-invasive MR Phlebography in Vienna is 450 Euro.

Dr. Ivan Dobrocky, PhD, MSc

www.minimal-invasiv.at
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Postby Jamie » Mon Aug 10, 2009 7:26 am

This truly is amazing.
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Postby mrhodes40 » Mon Aug 10, 2009 8:23 am

The best Slovac phlebologist???....Wow!

I am really delighted for you Erika .....AND for all people with MS that this is going forward with such interest!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Loobie » Mon Aug 10, 2009 8:45 am

Let's put Erika and Joan in the same room for a while, I bet they get the healthcare thing done :lol: :lol:
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Postby Jamie » Mon Aug 10, 2009 8:56 am

I was thinking the same thing!

Once this MS stuff is sorted what should we move on to?!!
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Postby ErikaSlovakia » Mon Aug 10, 2009 8:57 am

Loobie wrote:Let's put Erika and Joan in the same room for a while, I bet they get the healthcare thing done :lol: :lol:

:D Oh, no! Even my friends in Slovakia are joking about it as they know I have education for it. I really can not stand the politics and corruption.
But yes, I manage almost everything. I just could not manage MS.
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Postby ErikaSlovakia » Wed Aug 12, 2009 8:45 am

So, I am back from Bratislava (capital of Slovakia).
I am supposed to call this hospital also in Bratislava: http://www.nusch.sk/.
They do the phlebography there. I wish they would do it there for me because it is the best hospital in Slovakia. I would really feel safe there.
The next possibility is another town in Slovakia wich is also very good.
I am just very tired.
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Postby cheerleader » Wed Aug 12, 2009 9:16 am

ErikaSlovakia wrote:So, I am back from Bratislava (capital of Slovakia).
I am supposed to call this hospital also in Bratislava: http://www.nusch.sk/.
They do the phlebography there. I wish they would do it there for me because it is the best hospital in Slovakia. I would really feel safe there.
The next possibility is another town in Slovakia wich is also very good.
I am just very tired.


Stay strong, Erika. We're sending you our positive hopes and energy from afar. You have started this journey, and it will be of benefit to many, many people.

"The journey of 1000 miles begins with one step." Lao Tzu

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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