CCSVI and Slovakia, Europe

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

Postby BBE » Fri Oct 23, 2009 4:51 am

http://www.euromedic.com.pl/index.php?m=8
Dr n. med. Tomasz Ludyga is (based on my translation from polish) the head of this clinic. (surgeon and angiologist)
It is called an one-day surgery clinic.
Dr. Simka is sometimes testing MS patients here on their Doppler USG as he did in our case too. There is a price list on that page and it is probably the same one I saw when we were there. If I remember his face well he was sitting next to Dr. Simka while he was doing the USG to my girlfriend.
So anyway I am a bit surprised because I thought Dr. Simka was intending to do the surgeries.
But there should be no doubt about the experience of any angiologist-surgeon who has done such procedures for years even thought in arteries...I think they don`t have any problem with stenting veins. Someone just has to show the problem to them as for example Dr. Simka did with USG.
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Postby ErikaSlovakia » Fri Oct 23, 2009 7:31 am

Hi BBE, there are more EuroMedics in Poland.
Rici was here: http://www.zozmswia.internetdsl.pl/
Niepubliczny Zakład Opieki Zdrowotnej EuroMedic; Oddział chirurgii naczyniowej; ul. Głowackiego 10; 40-052 Katowice

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 Oct 23, 2009 10:50 am

If everything goes well, so Czech Republic will be next place where patients can have Doppler, MRV and also the procedure.
The hospital is in town Trinec - not far from Katowice.
Dr. Simka could help them to start it. The Czech doctor is interested in it.
So, let us hope...
Anybody can try to contact them: chirurgie@nempodlesi.cz

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 » Sat Nov 14, 2009 11:57 am

More Slovak patients have the diagnosis from Dr. Simka.
Some of them are working on the health insurance papers because they want to have the procedure done in Poland.
They are visiting doctors - I gave them the contacts. It is easier for me because I visited some doctors before my procedure. I am still in touch with some doctors - angiologists, radiologists, not so many neurologists.
I am also in contact with some doctors from Czech Republic.
They wanted more info, so of course I sent them as much as I could.
I go to see an angiologist next week. The hospital is not far, only 33 km so I have promissed the doctor to come.
I still communicate on 2 Slovak and one Czech forum. Patients are interested in this.
I just wish they could speak English.
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 ozarkcanoer » Sat Nov 14, 2009 12:17 pm

Erika.... I am very grateful that YOU speak English !!!!!
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Postby ErikaSlovakia » Sat Nov 14, 2009 12:26 pm

ozarkcanoer wrote:Erika.... I am very grateful that YOU speak English !!!!!

Trust me, I am also very grateful I speak English :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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Postby ErikaSlovakia » Mon Nov 16, 2009 12:20 pm

Doctors in Eastern Slovakia.

At least they listen to the patients. The second Slovak patient is going to see the same doctor as the first one - they do not know each other.
The doctor is not willing to help with the papers for the health insurance - they say the same story: we also have USG, we also have MR and we also insert stents. You know the end of story - they will not be able to find it - so the patient is healthy.
But, even the doctor finds it interesting, because he got the second patient from Dr. Simka in quite short time.
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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Dr Simka and your treatment

Postby Dovechick » Mon Nov 16, 2009 10:39 pm

Hi Erika
I have been reading your thread with great interest since I found out about ccsvi a couple of days ago. I hope that things are progressing well for you.
My daughter Ella (who has MS) and I live in the UK and dr Simka seems to be our most practical choice at present. Ella would have to travel in a wheelchair although she can walk a short distance for transfers etc, can you tell me if this is feasible, would I need to hire a car from the airport, for transfer and between hotels and the clinic? Maybe you have already answered these questions somewhere else, if so just point me in the right direction.
This is so exciting... I just wish we did not have to travel to another country too, but we don't have time to waste, Ella's condition is not stable and a few months would make all the difference.
Thanks for the information you have shared here it has been a godsend.
Michele
Last edited by Dovechick on Sun Dec 13, 2009 10:21 am, edited 1 time in total.
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Postby ErikaSlovakia » Tue Nov 17, 2009 9:47 am

As some of you know, I went to the town Nitra in Slovakia to meet and inform Dr. Mondek - vascular surgeon about CCSVI, MS and my procedure.
I am still surprised and he was also surprised. Dr. Ludyga is his friend 8O
The world is so small.
So, again, I had it easier to explain the problem. He asked me to say hello to Dr. Ludyga and he wants me to send him more information. He is very interested in this.
I just want to make it easier for the other patients. I know they insert stents even into the jugular vein but not in this indication - MS.
I also explained him, that the main problem at the moment is to be able to make the diagnosis.
Well, another lucky day :D

For Phil: I wish you were so lucky, because in my case this story means I can have the check up anytime by Dr. Mondek. My health insurance will pay for it for sure. But I feel good.

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 Nov 26, 2009 12:54 am

PLEASE!

Dear Slovak and Czech friends/patients/simply anybody!
Be so nice and ask me questions on this Forum in English,

here in German: http://csvi-ms.net/forum/viewtopic.php? ... 2443#p2443

here in Slovak: http://www.szsm.szm.com/forum/index.php ... =9#msg3047

here in Slovak as well:
http://www.sclerosis-multiplex.sk/forum ... uctId=i292

here in Czech: http://klubsms.cz/forum/viewtopic.php?id=2253&p=12

I am glad I can help you, many of you know only about this site and do not speak English well enough.
My e-mail box is getting really full and it is not necessary to answer the same questions one by one.
I understand you prefer contact me individually but I am not able to answer all your e-mails anymore.
I am sure you understand that.
Thank you, I am ready to help you on all of these Forums.

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 » Sun Dec 13, 2009 5:23 am

If everything goes well, there will be MRI-SWI with Haacke`s protocol in January 2010 in Bratislava.
It is also good news for patients from Austria as it is so close. You can actually ride a bike to get to Austria from that part of Bratislava.

I will inform you for sure because I want to go there to check the iron deposition in my brain.

Bratislava is capital of Slovak Republic/Slovakia - former Czechoslovakia.

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 » Fri Dec 25, 2009 8:41 am

MRI-SWI already in Slovakia!
The town is called Banska Bystrica. It is in the middle of Slovakia.
They use it especially for other diagnosis but it should not be a problem to detect iron in brain.
The price is 400-600 Euro.
I think it is the first place in Slovakia. The second should be Bratislava (capital of this small country) in January 2009.
It is very possible I will not have to pay for it. I just must get a "prescription" from a neuro.
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 colapesce » Fri Dec 25, 2009 10:36 am

Erika - you're amazing!

Thank you so much for all of the info you've provided.
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Postby ErikaSlovakia » Sat Dec 26, 2009 6:16 am

My story was published in Slovak MS magazine Nadej (Hope) - 1 page.
Dr. Valasek - radiologist has there 2 pages about CCSVI and MS.

Another Slovak radiologist from Bratislava has called me today and asked for more information because his colleague in another hospital wants to install SPIN software (SWI) and his friend - neuro is interested a lot in whole CCSVI story.
They plan to be able to detect iron in brain and CCSVI in jugulars and azygos as well, in January maybe February 2010.

They saw my jugulars before my procedure and have all CDs from Poland.
It is a state hospital so I am not sure if they do private MR as well. I do not know how it works.
As soon as I know more I will inform you.

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: 1116
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby Algis » Sat Dec 26, 2009 7:25 am

Fantastic Erika!!! - It is spreading - Good News and thank you very much :)
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