CCSVI and Slovakia, Europe

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

Postby Lyon » Tue Aug 18, 2009 1:20 pm

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Postby mrhodes40 » Tue Aug 18, 2009 2:35 pm

Erika

Be happy this is going forward for you and everyone in Slovakia! If Holly was able to respond right now she would be the first person to say "way to go Erika!" She was always the first to do that...
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 Sharon » Tue Aug 18, 2009 2:59 pm

Erika - Holly would be so happy for you--she would be encouraging you to move forward.

On August 5th, Holly wrote to you:
peekaboo
Posted: Wed Aug 05, 2009 10:52 pm Post subject:

--------------------------------------------------------------------------------

this is very exciting...you go girl


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Postby Lyon » Tue Aug 18, 2009 4:50 pm

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Postby Rokkit » Tue Aug 18, 2009 7:31 pm

Erika, you are much needed beacon of light right now. Don't let anything slow you down.

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Postby catfreak » Tue Aug 18, 2009 8:59 pm

Erika,

I feel the same way. I have all this good news and I just can't be happy about.

I think Holly would want us to be happy for ourselves and what we have ahead of us and at the same time celebrate her life and courage.

We just chatted on Facebook the day before she left for Stanford. I never thought that would be the last time. I am overwhelmed with sadness and loss.

We must press forward in her sweet pioneer memory.

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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Postby ErikaSlovakia » Tue Aug 18, 2009 11:56 pm

Thank you all. I known Holly is somewhere happy for me but I just still can not stop my tears...
Sorry.
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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Postby ErikaSlovakia » Wed Aug 19, 2009 12:05 pm

Dr. Simka made Doppler Ultrasound to another patient who lives in Germany.
Jugular vein Stenosis was found in 3 places.
Dr. S. is thinking of some plan for us.
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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Postby Sharon » Wed Aug 19, 2009 2:27 pm

Keep moving forward Erika! This is all good news.
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Postby CureOrBust » Wed Aug 19, 2009 7:36 pm

ErikaSlovakia wrote:Dr. Simka made Doppler Ultrasound to another patient who lives in Germany.
Jugular vein Stenosis was found in 3 places.
Is Dr Simka doing different doppler tests to the ones described in the Zamboni studies?
I thought the doppler tests as specified by Zamboni, simply confirmed irregularities in blood flow, not the actual stenosis that cause them?
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Postby ErikaSlovakia » Thu Aug 20, 2009 3:35 am

CureOrBust wrote:
ErikaSlovakia wrote:Is Dr Simka doing different doppler tests to the ones described in the Zamboni studies?
I thought the doppler tests as specified by Zamboni, simply confirmed irregularities in blood flow, not the actual stenosis that cause them?

This is very good question. I am sorry, but I do not know the answer. But I would like to.
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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Postby ErikaSlovakia » Thu Aug 20, 2009 3:46 am

I AM LUCKY GIRL!!! :D :D :D

I went through couple of complications today to find a hospital that would do the phlebography or something. One doctor wants to do it but he needs written recomandation from some doctor. Of course, nobody wants to do it because they would have problems with the insurance company.

I just came home to have lunch and some rest and a doctor - neurologist from Bratislava called me and asks me nicely to come on Monday 8/25 for an MRV. I am supposed to start a trial with Teriflunomid, I sent the doctor my results from Dr. Simka. She says if they really find vein problems the company does not want me to start the trial. I DO NOT CARE (I thaught), just do the MRV!!!(I thaught).
I believe, there is an angel or somebody up there helping me.
I am soooo happy :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
ErikaSlovakia
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Location: Slovakia, Europe

Postby Needled » Thu Aug 20, 2009 4:42 am

I'm so happy for you, too. :)
there is an angel or somebody up there helping me.

Erika, I think you're absolutely right, and she'll do whatever she can to watch over and help us.
So go have your tests and we'll be waiting for your next post, as always.
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Postby bestadmom » Thu Aug 20, 2009 5:53 am

You lucky girl!!! Getting the test done next week is great. Don;t worry about not entering the drug test. Once your stenosis is repaired you won't need the drugs.
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Postby catfreak » Thu Aug 20, 2009 6:02 am

Great news Erika!

Keep us posted.

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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