Going to Poland!!!!

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

Going to Poland!!!!

Postby Nees » Sat Nov 07, 2009 9:52 am

Hi everyone
First of all a massive THANK YOU!!! I've been reading and learning so much from this forum, and it has given me the impetus to actually take the plunge: I have an appointment with Dr. Simka for a doppler ultrasound on the 1st December!!! I'm going the go over for the 30th November so if anyone else is there, let me know and we can meet up!

Some of my background: I was diagnosed with RRMS Nov 07, although there had been 'odd happenings' for 10 years previous to that. By the time it was diagnosed it was aggressive and I had 4 relapses within 6 months. By the time of my fifth relapse, this time last year, I went on Tysabri and had my EDSS assessed at 6.5. Since then I have, thanks to the drugs and a very strict diet (BBD), improve dramatically and now I reckon my EDSS to be 3.0. My hope is that this procedure will stop progression and enable me to come off Tysabri. I think diet will heal the damage. Also, I hope it will take away my fear of the future.

Health and happiness!
Nees
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Postby wonky1 » Sat Nov 07, 2009 10:22 am

Well done Nees, best of luck.
I will be following in your footsteps on the 7th.
Please post your experiences.
Wonky
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Postby ozarkcanoer » Sat Nov 07, 2009 10:57 am

Wonderful, Nees !!!! The more people who participate in these early CCSVI interventions the sooner the news will get out. Good luck and I'm rooting for you all the way across the ocean in the middle of the USA !!!!!
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Postby ErikaSlovakia » Sat Nov 07, 2009 12:21 pm

Hi Nees,
you do very correct thing!
You will be in good hands. They were so sure with what they were doing. They did not risk. Plus, they were nice.
I always have very good time in Poland. All doctors there are so intersted in the problem! I do not have to worry at all. I trust them.
Thanks God for Dr. Simka! He should be cloned!
Also Dr. Ludyga is so busy and he is happy to help MS patients.
I was surprised. Dr. Kazibudzki is a vascular surgeon. And there was also Dr. Świerad who is interventional cardiologist, and his assistance was very important since he has experience in intravenous endovascular procedures in the area next to heart. Dr. Simka was there as well.
Wife of Dr. Ludyga is just great. All the nurses......
Well, I must say again I am so lucky and happy.

Dr. Simka sent me an e-mail now with the information that they will start doing the procedure also in hospital in Tychy at the beginning of December. Good to know.
Dr. Hartel - the radiologist is also very good. Well, it is simply very good team.
You are also lucky!
Erika
Last edited by ErikaSlovakia on Tue Dec 08, 2009 11:51 pm, edited 1 time in total.
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 mrhodes40 » Sat Nov 07, 2009 12:25 pm

Great Nees! I am happy for you and wish you very well!

Please do make a tracking thread entry; Erika you too so we can follow how you do as time goes on. You can edit your entry and add to it later as things change even more.
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 Pepe » Sat Nov 07, 2009 11:31 pm

Nees on 1th. Wonky1 on 7th. Pepe on 8th. LR1234 on 10th.

Anyone else?
Last edited by Pepe on Sun Nov 08, 2009 8:11 pm, edited 2 times in total.
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Postby ErikaSlovakia » Sat Nov 07, 2009 11:58 pm

mrhodes40 wrote:Great Nees! I am happy for you and wish you very well!

Please do make a tracking thread entry; Erika you too so we can follow how you do as time goes on. You can edit your entry and add to it later as things change even more.

Yes, I will do it today for 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
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Postby ErikaSlovakia » Sun Nov 08, 2009 3:53 am

I am going to Dr Simka on the 10th Dec. I don't know if I will be just having the doppler though rather than the procedure. I suppose if Dr Simka finds something treatable and there is time I could extend my stay in Poland.

Great!
I was also ready for more options. It is better to be flexible. You will see, but you are in good hands.
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 Edser » Mon Nov 09, 2009 12:23 am

Pepe wrote:Nees on 1th. Wonky1 on 7th. Pepe on 8th. LR1234 on 10th.

Anyone else?

Good Morning TIMS :D
I'm going to see Dr Simka & his team Mon:30/11/09
Best of luck to everyone that is going for the Procedure & well done to all that have gone before us :D
Slainte Mo Chara
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Edss Before Procedure:6
Edss After Procedure:4
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Postby Edser » Mon Nov 09, 2009 12:32 am

Piotr Wenka a Polish gentleman is going to visit Katowice today.Best of luck Piotr lot's of love from Ireland.
Slainte Mo Chara
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Edss Before Procedure:6
Edss After Procedure:4
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Postby Brainteaser » Tue Nov 10, 2009 2:44 pm

Hi All,

It's all happening quickly but I'm also booked in for Poland :D - for the week commencing 23 November. I'm ultra busy getting things together at the moment, but I'll give you a run-down in a day or 2.

Phil
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Postby Edser » Tue Nov 10, 2009 3:19 pm

Brainteaser wrote:Hi All,

It's all happening quickly but I'm also booked in for Poland :D - for the week commencing 23 November. I'm ultra busy getting things together at the moment, but I'll give you a run-down in a day or 2.

Phil

Good evening Phil,
That's brillant new's :D
Slainte Mo Chara
Edser & Anna

PS:Was anybody from this forum contacted by www.msrc.co.uk
Judy Graham of New Pathways.
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
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Postby Edser » Tue Nov 10, 2009 3:35 pm

[quote="Pepe"]Nees on 1th. Wonky1 on 7th. Pepe on 8th. LR1234 on 10th.

Anyone else?[/quote
YAaaaaaaaaaaaaaaa dont forget the PADDY 30th Nov EDSER

Slainte Mo Chara
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Edss Before Procedure:6
Edss After Procedure:4
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Postby Sesj » Tue Nov 10, 2009 10:29 pm

7th of December
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Postby Sharon » Wed Nov 11, 2009 7:26 am

To all of you across the Atlantic!

Congratulations - it is so exciting to hear that you are able to be tested and treated and to hear that Dr. Simka will be adding another hospital to do the procedure. This is becoming an international sensation. Now, we need to get some of those folks "down under" in Australia and New Zealand tested and treated.

Good luck to all :) :) :!:
Sharon
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