CCSVI and Slovakia, Europe

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

CCSVI and Slovakia, Europe

Postby ErikaSlovakia » Fri Jul 31, 2009 4:55 am

Hi everybody!
I am new here. I have RRMS since 1996. I live in Slovakia, Europe.
I am 36 years old woman. I had chance to visit many places in the USA and Canada. My cousins live in Toronto and Vancouver. But I prefered the weather in California.

I have started to ask doctors in Slovakia about possible tests and treatment of CCSVI. My MS doctor did not know about it so I gave her printed information.
I also started to look for a radiologist to do the tests.

I want to THANK YOU ALL for this forum and infomation!!!

I will inform you later.
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Postby cheerleader » Fri Jul 31, 2009 8:18 am

Dear Erika-
Welcome to the boards! I also love Californian weather...but have never been to Slovakia. The furthest east I've travelled is to Prague, Czech Republic- but I hope to see your country someday! My family is from the Ukraine.
Good luck finding other doctors to read the research. There is a Polish doctor testing Polish MS patients now, and he is very knowledgeable of the testing procedures for CCSVI-

Dr Marian Simka *
Department of Angiology, Pszczyna, Poland
email: Marian Simka (mariansimka@poczta.onet.pl)
*Correspondence to Marian Simka, Department of Angiology, Pszczyna, Poland

all the best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Fri Jul 31, 2009 9:10 am

Welcome!
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Postby ErikaSlovakia » Fri Jul 31, 2009 12:24 pm

cheerleader wrote:Dear Erika-
Welcome to the boards! I also love Californian weather...but have never been to Slovakia. The furthest east I've travelled is to Prague, Czech Republic- but I hope to see your country someday! My family is from the Ukraine.
Good luck finding other doctors to read the research. There is a Polish doctor testing Polish MS patients now, and he is very knowledgeable of the testing procedures for CCSVI-

Dr Marian Simka *
Department of Angiology, Pszczyna, Poland
email: Marian Simka (mariansimka@poczta.onet.pl)
*Correspondence to Marian Simka, Department of Angiology, Pszczyna, Poland

all the best,
cheer

Dear cheerleader! Thank you! I just have finished my second University in Prague. I love the old part of town. In case you come to Slovakia, contact me, you are welcome.

Thank you for the email of Dr. Simka. I will contact her. I have read about her in your previous messages.

Say hi to the ocean, please. I miss it so much.
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Postby ErikaSlovakia » Sat Aug 01, 2009 12:27 am

So, I just have sent an e-mail to Dr. Simka.
The town where she is, is only 227 km/141 miles far from my town. It is just another country.
I have also sent an a-mail to a radiologist in Slovakia.
I will see...
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Postby Ernst » Sat Aug 01, 2009 12:41 am

ErikaSlovakia wrote:So, I just have sent an e-mail to Dr. Simka.
The town where she is, is only 227 km/141 miles far from my town. It is just another country.
I have also sent an a-mail to a radiologist in Slovakia.
I will see...


Very good! So Dr.Simka lives quite near you - thats a relief for you. Im not sure, but I think Marian Simka is "he", not "she"? I might be wrong, but saw one photo of dr. Simka..
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby ErikaSlovakia » Sat Aug 01, 2009 2:00 am

Ernst wrote:Im not sure, but I think Marian Simka is "he", not "she"? I might be wrong, but saw one photo of dr. Simka..


I also think it is "he", because Marian is a name for men. We use it often in Slovakia, as well. I just saw somewhere written "she", so I was not sure.
Anyway, thanks!
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Postby mrhodes40 » Sat Aug 01, 2009 6:44 am

Hi Ericka!
I wish you well with your quest to find an answer for your MS !. I am so glad you found this website! You were right, Dr Simka is a man. you are fortunate to be so close! Let us know what happens, it will be exciting when we have people from all over talking about their experience.

It is great that you are here!
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 01, 2009 7:54 am

Hi mrhodes40!
Yes, I am lucky it so close, but I also have plan B. If it does not work with Dr. Simka for some reason I will contact Dr. Schilling in Austria. I speak fluently german and it is 825 km/515 miles far from my town. There is a direct train from Vienna in Austria to Dornbirn in Austria.

Well, nothing can stop me. I will go walking and swimming all around the world or I will put the stents by myself into my neck :D
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Postby mrhodes40 » Sat Aug 01, 2009 8:00 am

I will put the stents by myself into my neck :D


8O It is a god thing you have options :lol:
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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Slowly, Erika!!

Postby lyndacarol » Sat Aug 01, 2009 1:37 pm

Exuberance is generally a good thing, Erika; but your comment (as a joke, I am sure),
Well, nothing can stop me. I will go walking and swimming all around the world or I will put the stents by myself into my neck.
worries me just a little bit.

Slow down just a little , Erika. Try to take it step by step.

1. Testing to see if there is stenosis at all comes first.

2. LOTS of consideration and discussion to determine what comes next, dependent on outcome of #1.

3. Then...

I understand only too well your desire to DO something about this horrible disease; my thoughts and prayers are with you.
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Re: Slowly, Erika!!

Postby ErikaSlovakia » Sun Aug 02, 2009 12:28 am

lyndacarol wrote:Exuberance is generally a good thing, Erika; but your comment (as a joke, I am sure),
Well, nothing can stop me. I will go walking and swimming all around the world or I will put the stents by myself into my neck.
worries me just a little bit.

Slow down just a little , Erika. Try to take it step by step.

1. Testing to see if there is stenosis at all comes first.

2. LOTS of consideration and discussion to determine what comes next, dependent on outcome of #1.

3. Then...

I understand only too well your desire to DO something about this horrible disease; my thoughts and prayers are with you.

Hi, of course it was only a joke.
Yes, you are right. I must go step by step. I am looking for MRV in Slovakia. Then I will see what to do.
Thank you again. I am so glad I have so much support.
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Postby ErikaSlovakia » Tue Aug 04, 2009 2:19 am

They are starting new web page about CCSVI in Europe. I think from Switzerland. They have asked me to write something. It is only a tes phase. It should be public in about 2 weeks. So I have there my story.

I have talked to my health insurance company today. As I might have the op in other country I would like to ask them for some financial support. I have to send them an application with some documents. I also have to go to the social insurance company. It seems they will pay for it. As soon as I find the doctor I must do it. If I pay first I will not get the money back.
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Postby Needled » Tue Aug 04, 2009 5:55 am

Erika, With your determination, I'm sure you'll have everything rolling sooner rather than later. And I'm still laughing at your comment about putting the stents in yourself. :lol:
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Postby ErikaSlovakia » Tue Aug 04, 2009 7:47 am

YES, YES, YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am soooooo happy!!!!!
I have got an e-mail from Dr. Simka:
"Hello,
I don't think that there is a doctor in Slovakia familiar with these issues at the moment. This is very, very new.
Anyway, if you have an opportunity to come to Poland (Tychy, next to Katowice) it would be possible to perform a preliminary ultrasound scanning of your veins. I suggest to do it in our centre, and not in Slovakia, since it is very operator-dependent examination and an examiner not familiar with it may find nothing regardless of a real pathology.
Then, we could plan a treatment, perhaps within Slovak insurance in Poland; or there will be a Slovak centre in some months.
M.Simka"
Of, course, Iwill DO IT!
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