CCSVI and Slovakia, Europe

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

Postby ikulo » Sat Jul 03, 2010 10:40 am

Hi Erika,

where have the slovak patients been getting their treatment? was it just through a research study or is there a doctor in slovakia who is now treating?

thanks!
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Postby ErikaSlovakia » Sat Jul 03, 2010 10:54 am

ikulo wrote:Hi Erika,

where have the slovak patients been getting their treatment? was it just through a research study or is there a doctor in slovakia who is now treating?

thanks!

Hi ikulo!
This is the hospital where they do the procedures: http://www.nusch.sk/en/
I will PM you the name of the IR doctor who is doing the procedures.
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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Postby ErikaSlovakia » Fri Jul 23, 2010 2:29 am

1 year later.
It was exactly July 23, 2009 when I read here about Dr. Zamboni, Dr. Schelling, Dr. Dake, Jeff, Marie and others.
After reading Dr. Zamboni`s study and after reading Dr. Schelling`s study I decided the same day to have the procedure (liberation).
As my language is close to polish language I found Dr. Simka`s e-mail address on polish google. I was not sure if it is really him so I asked Joan Beal for help and she sent me his e-mail address.

August the 7th 2009, I was sitting together with Dr. Simka and Dr. Kostecki in hospital in Tychy (Poland, close to Katowice).
They found reflux and pathological valve in my left jugular vein.

To make it short I had my procedure done in Katowice on November 3, 2009. I got one stent, which is still fine, open, no problem.
However bloodflow in my left jugular vein is very slow. So, there must be something else. I will meet Dr. Simka in October this year.
Thanks to many patients and doctors before me and thanks to many patients and doctors after me, HUGE JOB was done.
However I must say I am very upset because of the CCSVI situation in Canada. :( I hope I will be able to post positive sentence about Canada pretty soon.
Erika
P.S. Thank you TIMS, I found information about LDN her in 2008, I found CCSVI in 2009 and found many, many other important things in 2010!
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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Location: Slovakia, Europe

Postby Rokkit » Fri Jul 23, 2010 7:38 am

Erika, thank you for teaching us all how to persevere. Thankfully, the medical establishment saw fit to intervene before you installed the stent yourself. :D

It sounds like there is more to be done in your case and in many others. Hopefully, CCSVI research will advance quickly. And if it proves out, we can all receive the treatment we need.
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Postby Katie41 » Fri Jul 23, 2010 6:40 pm

Erika,

Thank you so much for your wonderfully positive attitude. Your video of your procedure convinced me to travel to Poland where I experienced an extraordinarily kind, competent, committed staff wanting nothing more than to help people. My daughter and I will never forget the many wonderful people we met there.

You are a treasure trove of information. I anxiously await your visit in Oct. and hope that they will find answers for you with their continuing enhanced experience.

Katie41
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Postby Pepe » Fri Jul 23, 2010 9:44 pm

Erika,

When you opened those doors, you were opening the doors for many people like us. What could I say to you, that I did not say before? As your Spanish is better than my English, this time I am going to tell you something I have learnt from my grandmother: "Es de bien nacido, ser agradecido".

A big hug,

Pepe..."un bien nacido".

PS.- Just now, we are in Poland. This week we visited Dr. Simka to get the follow-up control done and the left IJV of María has a normal flow. Lower than the flow of the rigth IJV, but normal. As you probably remember, before the intervention there was no flow at all. María is doing very, very well: no steps back. She did not have to use the wheelchair since the procedure. Now she walks with a cane. Fatigue is gone 100%. It is unbelievable!
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby ErikaSlovakia » Sat Jul 24, 2010 12:52 am

Pepe wrote:Erika,

When you opened those doors, you were opening the doors for many people like us. What could I say to you, that I did not say before? As your Spanish is better than my English, this time I am going to tell you something I have learnt from my grandmother: "Es de bien nacido, ser agradecido".

A big hug,

Pepe..."un bien nacido".

PS.- Just now, we are in Poland. This week we visited Dr. Simka to get the follow-up control done and the left IJV of María has a normal flow. Lower than the flow of the rigth IJV, but normal. As you probably remember, before the intervention there was no flow at all. María is doing very, very well: no steps back. She did not have to use the wheelchair since the procedure. Now she walks with a cane. Fatigue is gone 100%. It is unbelievable!

Dear Pepe and Maria!
Thank you for your nice words. Gracias, entiendo :)
I am so glad Maria feels well. I still can not say I feel well. I still have many symptoms. I hope they find where is the problem. However, my nerve pain is gone.

When I started all this "game" it was my big plan to "open the door".
Mucha suerte!
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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Postby ErikaSlovakia » Fri Aug 27, 2010 7:59 am

18th Slovak Angiological Congress with International participation.
Sept. 29. - Oct. 2., 2010 - Tatranska Lomnica, Slovakia.

- CCSVI, MS, Dr. Simka...
http://www.angiology.sk/sak/index.php?p ... m/en/10/2/
(click on Program in PDF - it is written in English as well)
Go to page 9 - Thursday.
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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Posts: 1121
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby Rokkit » Fri Aug 27, 2010 8:35 am

Thanks for posting this Erika. Wow, "Do localization and severity of chronic cerebrospinal venous insufficiency correlate clinical course of multiple sclerosis?" I'd sure like to be there for that one. It's hard to imagine the answer isn't "yes" at least in part, or there probably wouldn't be a talk on it.
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Postby ErikaSlovakia » Fri Aug 27, 2010 9:01 am

Rokkit wrote:Thanks for posting this Erika. Wow, "Do localization and severity of chronic cerebrospinal venous insufficiency correlate clinical course of multiple sclerosis?" I'd sure like to be there for that one. It's hard to imagine the answer isn't "yes" at least in part, or there probably wouldn't be a talk on it.

I will be there, so I will tell you :wink:
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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Posts: 1121
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby thisisalex » Fri Aug 27, 2010 1:36 pm

ErikaSlovakia wrote:18th Slovak Angiological Congress with International participation.
Sept. 29. - Oct. 2., 2010 - Tatranska Lomnica, Slovakia.

- CCSVI, MS, Dr. Simka...
http://www.angiology.sk/sak/index.php?p ... m/en/10/2/
(click on Program in PDF - it is written in English as well)
Go to page 9 - Thursday.
Erika


its great Erika! thank you
the title sounds nice
it would be nice to have a video or transcript or the presentations :)
i will post this to my blog

thank you for sharing!
alex
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Postby ErikaSlovakia » Sat Aug 28, 2010 12:44 am

thisisalex wrote:
ErikaSlovakia wrote:18th Slovak Angiological Congress with International participation.
Sept. 29. - Oct. 2., 2010 - Tatranska Lomnica, Slovakia.

- CCSVI, MS, Dr. Simka...
http://www.angiology.sk/sak/index.php?p ... m/en/10/2/
(click on Program in PDF - it is written in English as well)
Go to page 9 - Thursday.
Erika


its great Erika! thank you
the title sounds nice
it would be nice to have a video or transcript or the presentations :)
i will post this to my blog

thank you for sharing!
alex


Hi Alex!
Of course, in case they will provide some official papers or video I will make it public.
Erika[/u]
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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Posts: 1121
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Positive CCSVI study in Slovakia

Postby ErikaSlovakia » Sat Feb 26, 2011 2:07 am

This study was done in Slovakia. They had 40 MS patients and 40 healthy controls. They used ultrasound (no MR, no venography).
They found 9 healthy controls with reflux and 34 MS patients with reflux.
Conclusion: Venous reflux is significantly higher in patients with MS than in healthy controls.

They made it public here: 24. Czech and Slovak neurological conference in Hradec Kralove (Czech republic) 24.-27. Nov. 2010.

This is slovak original:
"l4-3 výskyt venózneho refluxu u pacientov s roztrúsenou sklerózou – prospektívna štúdia
Nosáľ V1, Kurča E1, Michalik J1, Kantorová E1, Sivák Š1, Zeleňák K2
JLF UK a Martinská UN:
1Neurologická klinika
2Rádiodiagnostická klinika
chronická venózna cerebrálna insuficiencia (chvci) je jednou z hypotéz vysvetľujúcou etiopatogenézu roztrúsenej sklerózy. výskyt venózneho refluxu vo vena jugularis interna verifikovaný pomocou ultrazvuku patrí medzi predpokladané markery chvci. cieľom štúdie bolo overiť zvýšený výskyt venózneho refluxu vo vena jugularis interna u pacientov s roztrúsenou sklerózou v porovnaní so zdravou populáciou. do štúdie bolo zaradených 40 pacientov s roztrúsenou sklerózou a 40 zdravých jedincov párovaných podľa pohlavia a veku.
vyšetrenie bolo realizované pomocou ultrazvuku a bol sledovaný výskyt refluxu vo vena jugularis interna. výsledky boli štatisticky spracované pomocou Mcnamarovho testu. v kontrolnej skupine malo 9 pacientov prítomný reflux, zakiaľčo v skupine pacientov bol reflux prítomný v 34 prípadoch, čo predstavovalo štatisticky signifikantný rozdiel (p < 0,0001). porovnaním jednotlivých podtypov
roztrúsenej sklerózy bol zistený reflux u rr formy u 26 pacientov a 7 kontrol (p < 0,0001) a u pp formy u 7 pacientov a 1 kontroly (p = 0,412). Záverom je možné skonštatovať, že pacienti s roztrúsenou sklerózou majú signifikantne častejší výskyt venózneho refluxu v porovnaní s kontrolnou skupinou."
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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Posts: 1121
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby thisisalex » Sat Feb 26, 2011 4:36 am

great results from the neighborhood :) thank you Erika!
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Postby Rokkit » Sat Feb 26, 2011 7:48 pm

Erika, was this study blinded?
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