CCSVI and Slovakia, Europe

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

Dr. Schelling sent me more e-mails. He is nice, he also communicates with us on the http://csvi-ms.net/. Lucky me I also speak german.
I just must wait until they decide what to do with me.
My day will come. I am sure.
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
ErikaSlovakia
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Post by ErikaSlovakia »

Very good news! I wanted to receive e-mail with exactlythese words from Dr. Simka:
"Dear Erika,
I got your CDs. Unfortunatelly, this examination is of no value. I have spoken in Bologna to some radiologists, and their opinion is that CT angiography is not very useful in detecting lesions typical for MS (the problem is that CT cannot visualize occlusions that are inside the vein, like memebrane, web, or so). I have looked at your left jugular vein (the one with suspected stenosis) and I cannot see any. However, there is undistrubed flow through foramen jugularis, which is a good information, since there is no occlusion by the bone that would be very difficult to manage.
My suggestion is to look at the veins with MR phlebography. The other option is to operate on right jugular vein (with obvious stenosis) and at the same time to perform intraoperative phlebography, and to manage a stenosis if it is found. I talked to prof. Strvtinova in Monaco, and she promissed to help you to pass through all "paper" issues, if you were planning your treatment in Poland.
best wishes
Marian Simka"
I am going to call prof. Stvrtinova tomorrow morning. Great! I love this game!
: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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bestadmom
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Post by bestadmom »

AMAZING!!!! These doctors are great people. You are so lucky to have them on your side - and so smart that you just keep pushing.
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Jamie
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Post by Jamie »

Jesus, if anyone deserves a break its you Erika!
ErikaSlovakia
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Post by ErikaSlovakia »

Jamie wrote:Jesus, if anyone deserves a break its you Erika!
If you mean break now, so no, no, no, I had break last weak. I just really need break from the health insurance doctors.

If you mean break from problems in the past and get the OP, yes, yes, yes.

Well, this is like my job I had before when I was able to work. Just big challenges, managing, managing, managing...

Jamie, I will have break soon, I hope and believe. There are still so many thing to do. I am here with you, also with the new web site, also on czech and also on slovak forums. I would not be even able to go to work because I really do not have time. :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
ErikaSlovakia
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Post by ErikaSlovakia »

I AM LUCKY GIRL! :D

Prof. Stvrtinova has just called me. YES, YES, YES, she will help me to manage everything!
1. She is calling a hospital to get MRV for me right now! Of course, she will give me written reccomendation for the radiologist, so I do not have to pay anything.
2. She will also help me with the documents for my health insurance company. It means, they will pay for my treatment in Poland.

I am happy and I am lucky! :D :D :D
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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DigitalMunkey
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Congratulations Erika

Post by DigitalMunkey »

I hope this works out perfectly for you. My prayers and best wishes are with you :D


Peter
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Arcee
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Post by Arcee »

Very exciting! And inspiring. You have a world-wide audience eager to hear what happens. May your luck (which is built on your efforts, IMHO) continue :)
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Jamie
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Post by Jamie »

Hi Erika,

By 'break' I meant the American meaning which is a softer version of 'luck', usually brought on by hard work.

As in, the harder I practice the luckier I seem to get.

But I'm from the UK so not 100% sure - it's ALMOST the same language!!

However, it works both ways - you will need a rest after all of this!

I'm so excited that you seem to be getting closer and closer.

I look forward to the day you log on here and tell us you've had surgery and are feeling better!

I look forward to the day where no one has MS anymore, where all the research money is going on repair and early detection and non-invasive treatments and is FINALLY ON THE RIGHT RESEARCH PATH.

If I'm ever in Slovakia Erika the wine is on me!
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whyRwehere
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Post by whyRwehere »

My understanding of "you deserve a break", is that you have had bad luck so you deserve some good luck...or at least for the bad luck to stop. I was wondering what especially bad luck Erika had been having, besides being ill of course.
Erika, I am wondering about your ability to get things done in Poland. Is it only private insurance you have that will cover Poland, or is insurance from the Government (as there is in the UK and France, etc) covering the op?. I wonder if My husband should go to Italy, but am not sure what to do really, besides wait for Dr Franceschi to spread the word in France and hope something gets done here.
good Luck with your treatment and keep us updated (which I can tell, you will).
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catfreak
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Post by catfreak »

Woohoo!! You go Erika!! It won't be long now my friend.

Cat :) :)
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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bestadmom
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Post by bestadmom »

You go girl! Relief is coming.
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Jamie
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Post by Jamie »

My point was the woman has traipsed across Europe, several long train journeys spreading the word and trying her hardest to bring all these specialists together to even get seen whilst never losing her positive attitude.

We, in the USA simply called Stanford and went to California (thanks to Joan of course), we've been extremely lucky to have things move so very quickly.

Erika has worked harder to be seen and investigated than anyone in my opinion!

I can't believe how analyzed 'deserve a break' has been, this site is crazy sometimes.
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whyRwehere
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Post by whyRwehere »

Is there an emoticon for snickering?
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Jamie
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Post by Jamie »

not sure!!

there should be.

there should also definitely be a sarcasm font on the internet!

:)
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