CCSVI in Greece

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Ernst
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Post by Ernst »

Yes please, keep us informed how your things go there. Lets just hope that everything goes good. Good luck Sou.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
ErikaSlovakia
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Post by ErikaSlovakia »

Good luck, sue!!!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
LR1234
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Post by LR1234 »

Sou, Maybe your Dr might want to speak to Dr Ludgya first or something to help the procedure go smoothly...I am sure Dr Ludyga or Simka wouldn't mind. Maybe they have learned something since doing the procedure so many times that your new dr may want to know.

Good luck and Congratulations!
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sou
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Post by sou »

Thank you all for your kind words. I am a wreck, emotionally, and I am happy that I can speak with people that have been in my shoes.

Thanks, again.

The nervous as hell,

sou
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costumenastional
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Post by costumenastional »

Καλή τύχη φίλε. Και να είσαι σίγουρος ότι προσεύχομαι για σένα. όλα θα πάνε πολύ καλά.

Σπύρος.
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Annette
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Post by Annette »

costumenastional wrote:Καλή τύχη φίλε. Και να είσαι σίγουρος ότι προσεύχομαι για σένα. όλα θα πάνε πολύ καλά.

Σπύρος.
Yeah. Exactly what Spyro said.

I'll be in Athens next week too. Let me know if you're still there, won't you? I'll pop round.

Sending you hugs, good vibes and keeping fingers, toes + everything else crossed for you!

Good luck.

Καλἠ Λευτεριά - never thought I'd end up saying that to a man!
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Sotiris
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Post by Sotiris »

All my wishes to you sou. WE have to thank you for paving the way.
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Brightspot
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Post by Brightspot »

Sou
Just want to reflect back some of your wonderful, positive energy! Can not resist sending my best wishes, along with a hearty thank you for a much needed laugh out loud session while reading this thread.
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sou
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Post by sou »

Hi.

I am super anxious. I am leaving for Athens tomorrow and I can't seem to be able to get any sleep and it is already 4 am. I have been searching the forum for the last hour trying to estimate the possibilities of a false negative. It seems to me that I am the first to be checked using the DSA technique, which is a little more accurate than classic venography. I think that the whole procedure does not really hurt. Like GiCi said, it is better than going to the dentist.

How many people of this forum have found treatable stenosis and how many have not?

Is there anybody with a suspicious doppler having been found negative for CCSVI? I know it has worked the other way round.

I apologize for the post but I am almost panicked. I hope you understand... You always do.

Thank you all!

The 1 step before collapse,

sou
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TFau
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Post by TFau »

Sorry, I don't know those answers. I just wanted to wish you luck and I'll pray that you have treatable stenosis!

Can you try to think of something else for a while in order to relax (as if)! Maybe you could listen to calming music?

Best Wishes from Toronto!
Theresa
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cheerleader
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Post by cheerleader »

sou...hope you get some sleep. Deep breath. Count Zambonis if you have trouble :wink:

Most stenosis can be treated. It's the more progressive folks that have missing veins or very, very high stenosis. You'll be OK. You've been working hard for this, now is the time to let go and trust. Let the doctors look after you, and let us hold you up- we'll all keep you in our thoughts. Traveling mercies, and tell us know how it goes-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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costumenastional
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Post by costumenastional »

Just wanted to remind us that today, Sou has come to Athens for his vein exam.

I am Greek and Sou is a pioneer in our country.

I wish him my very best and may his veins be found totally blocked :)
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ClaireParry
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Post by ClaireParry »

Best wishes Sou. And I hope your veins are completely mangled :wink:

Claire
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sou
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Post by sou »

Hi all.

I have just found a spare internet conneciton.

Everything has gone very well, so far. Here are the results:

A shoulder bone had interfered with the development of the left IJV, making a very bad stenosis. So has the 2nd thoracic spinal bone with the azygos vein. It seems that both problems have begun when I was a fetus, but we are not sure yet. In addition, what seemed to be a stenosis in the hemiazygos vein was also treated, just in case it caused problems, too.

The procedure went smoothly. I was totally aware of what was happening and I was not given any sedative agent, because the operation was performed for the first time by a friend and he wanted me to actively participate in it.

Tomorrow I am seeing him again and I shall post his contact details. He is keen on treating more patients. He said that this is a major victory for science and Zamboni is real.

Needless to say how much I thank you all for your support. I would never be a pioneer if it weren't for you. Thnk you, thank you, thank you!

Καλή λευτεριά σε όλους!!! -- transl. Happy liberation to everybody!

sou
ErikaSlovakia
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Post by ErikaSlovakia »

Sou!
This is just GREAT!
Congratulation! :D :D :D
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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