CCSVI and Slovakia, Europe

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

Postby muse » Tue Aug 25, 2009 1:59 pm

Erika is the limit, isn’t she! We opened our CSVI-forum in Europe one week earlier as scheduled just because of her and her high speed CCSVI journey! Go girl you are inspiring! :D
Best
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http://csvi-ms.net
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Postby catfreak » Tue Aug 25, 2009 5:05 pm

Arcee wrote:

every time I read your posts I smile

Needled wrote:

Me, too. I think Erika's energy, detemination and spirit shines right through her words... :D


Me too!

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 cheerleader » Tue Aug 25, 2009 5:13 pm

ErikaSlovakia wrote: I want as many doctors as possible to see my veins. I want to make it easier for the other patients.:D


Your determination and hard work will help those that follow you, Erika. We're all cheering you on!!!!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ErikaSlovakia » Tue Aug 25, 2009 11:30 pm

Thank you all!
Hm, people smile at me when they look at me even I am in hospital with attack and can walk only couple of metres. I did not know people would smile when they read my words.
When I was able to work, people liked to work with me and almost always overtime. They simply did not want to go home.
Well, I was born like that.

So tomorrow is my CT venography in Banska Bystrica. It is in the middle of Slovakia, and it is also in the middle of Europe.
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 Ernst » Wed Aug 26, 2009 12:01 am

Keep on going Erika. This is interesting.. I really wait how your things are and the results.. just keep posting :)
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 » Thu Aug 27, 2009 9:37 am

Hi there,
so I am back from my second CT trip. The doctor found nothing. He showed me the images, explained to me nicely. As there is nothing, he will not do the phlebography.
I know, there is something, I just must find a radiologist who knows how to do it so he can see something.
Well, not in Slovakia anymore. I expected that. I knew there was little chance he would find something.
So, I will contact Dr. simka again. We were planing 2 weeks ago MRV in Poland. I just have asked him to wait because of these tests in Slovakia.
He goes to Monaco soon, after is Sept. 8th, so I gues after he might find out what and how to do it with me.
I will also send both CD´s to Dr. Schelling. He says he will have time to look at it.
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 » Thu Aug 27, 2009 10:27 am

Wow, look at how difficult it is to see this for the people not familiar with the idea.

It reminds me of something that happend some years ago.

Ulcers were always thought to be associated with stress, epsecially type A personalities. Often the person would get surgery, they would go in to the person's stomach and cut out the ulcer.

The surgeons that did this knew that there were always germs in these ulcers, they had seen them under the microscope, but they thought of it as a secondary phenomenon ie get the ulcer then germs move in.

Then Marshall started saying these germs CAUSED the ulcer. No, they said, no way. Germs can't live in the stomach, there's too much acid. It has to go there after the fact when the tissue is damaged.

It took some years but Marshall finally took pictures of his stomach to show it was healthy then swallowed the germ. When he developed an ulcer after that, he proved that he was right and that all the dogma was wrong.

My point is that what every one knows--ie that a CT scan that looks like X is normal--is often in the way of new findings. It takes people a while to buy the new idea.

I am glad you have DR SImka on your side! You are lucky!
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 Jamie » Thu Aug 27, 2009 10:30 am

the sad thing is it took years and years to be accepted.
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Postby Sharon » Thu Aug 27, 2009 1:07 pm

Erika - you are a pioneer in Europe. You have dealt with many setbacks...most people would have given up by now. Keep Going Girl!

Sharon
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Postby ErikaSlovakia » Fri Aug 28, 2009 1:54 am

Sharon wrote:Erika - you are a pioneer in Europe. You have dealt with many setbacks...most people would have given up by now. Keep Going Girl!

Sharon

To GIVE UP??????? It is for me synonym for a concentraiton camp during the secon world war in Europe!
That is my reality. So, no way. There are still many roads how to reach my goal.
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 CureOrBust » Fri Aug 28, 2009 5:22 am

ErikaSlovakia wrote:so I am back from my second CT trip.
...
I know, there is something, I just must find a radiologist who knows how to do it ...
Erika, have you had 2 CT's? I was planning on getting a CT performed and sending the images to someone who could read them, but on researching it, I found out how much radiation was involved. Now I am thinking along the lines of maybe waiting till I have a specialist who knows exactly what to do. If I am reading this right, it is something like 60-100 chest X-Rays!!

http://en.wikipedia.org/wiki/CT_Scan
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Postby LR1234 » Fri Aug 28, 2009 5:49 am

I Had a CT scan too and looked into all the radiation research. I just had my neck done and that is equal to 3 years living on planet earth. I wanted to have the CT scan done to show if I had stenosis. I won't have another one though, I will opt for the MRV next time (as I think 2 CT scans may be a problem)
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Postby Arcee » Fri Aug 28, 2009 6:55 am

I've been thinking about Jamie's comment that the ulcer research took years and years to be accepted, and what that might mean for the CCSVI research and MS. I have often thought about the analogy, especially because those researchers ended up with the Nobel prize :D
One huge difference though is the Internet. There is no way CCSVI would be where it is today without it, and most likely none of us would have stents in our necks with out it. So while valid and reliable scientific research does require years, and something really different can be hard to accept, perhaps the course of CCSVI acceptance will blow away the ulcer story.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby ErikaSlovakia » Fri Aug 28, 2009 7:52 am

CureOrBust wrote:Erika, have you had 2 CT's?

Yes, I had 2 CT´s. 1st was August 24th and the 2nd was August 27th.
I know about the radiation. Nobody could do it instead of me. MS is worse for me. I know it is risky.
I wanted to have 2, because of the comparison. I simply can not wait for miracles.
I might die earlier because of the radiation but somebody must do it. May be it is me... I will die one day anyway. At least something will stay here behind me.
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 cheerleader » Fri Aug 28, 2009 8:12 am

Arcee wrote:One huge difference though is the Internet. There is no way CCSVI would be where it is today without it, and most likely none of us would have stents in our necks with out it. So while valid and reliable scientific research does require years, and something really different can be hard to accept, perhaps the course of CCSVI acceptance will blow away the ulcer story.


This is a HUGE point. It was thru Dignan's posting of the Zamboni last DECEMBER (found on the internet/posted on the internet) and my correspondence with endothelial researcher Dr. Cooke at Stanford (found on the internet) that lead to Dr. Dake getting the Zamboni in his hands the week before he heard him speak at Charing Cross in APRIL. He admits he wouldn't have cared/attended Zamboni's lecture (he's a cardio-throracic doc) if he hadn't received the paper via the internet. Dr. Simka found all of us here, and we were able to recommend Erika to him. And it was thru sharing all of this on TIMS (again, the internet) that we have spread the information around the globe, and are now branching out into Facebook, web pages and beyond. Doctors are now hearing about CCSVI from their patients who have read it on the internet...something that just wasn't possible before.
This is a game changer is fighting disease. What a privilege for us all to be a part of it.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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