CCSVI and Slovakia, Europe

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

Postby ErikaSlovakia » Thu Aug 20, 2009 6:15 am

bestadmom wrote:Don;t worry about not entering the drug test.

The drug test is realy not important for me.
Furthermore, there is a possibility I will be taking placebo for more then 3 years!
Furthermore I can not take it together with LDN. To be honest, I can not imagine that, because I am half-dead without LDN.
I must keep it as TOP SECRET in Slovakia that I take LDN.
I hope they kick me out of the study next week.
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 » Thu Aug 20, 2009 8:06 am

You are very lucky, and congratulations!

The one thing to be careful of is, Dr Dake is recommending people get CT scans, instead of MRV's as there is less opportunity for operator influences, in the results. ie there is more chance they will show an abnormality, even if the operator does not understand exactly what they are looking for.
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Postby ErikaSlovakia » Thu Aug 20, 2009 8:21 am

CureOrBust wrote: Dr Dake is recommending people get CT scans, instead of MRV's as there is less opportunity for operator influences, in the results. ie there is more chance they will show an abnormality, even if the operator does not understand exactly what they are looking for.

Thank you! That is very important information for me.
How many Tesla schould be the machine?
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 Rokkit » Thu Aug 20, 2009 2:58 pm

ErikaSlovakia wrote: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.


That's hilarious since, if Zamboni be right, everyone in their trial has "vein problems."

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Postby Sharon » Thu Aug 20, 2009 3:04 pm

ErikaSlovakia wrote:
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.


That's hilarious since, if Zamboni be right, everyone in their trial has "vein problems."

Rokkit


Ditto Rokkit--- medicine at its best :roll:
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Postby CureOrBust » Thu Aug 20, 2009 6:28 pm

ErikaSlovakia wrote:How many Tesla should be the machine?
I had an MRV performed of my head only (I asked for the diaphragm to top of skull), and because it was preformed under their research funds (ie I didn't pay a cent), they used the "research MRI" instead of their shiny newer MRI paid by the government. The machine that they ended up using, was only 1.5 TESLA, and Dr Dake said it was a little noisy with arterial artefacts showing through. I would make a NON-MEDICAL GUESS that the noise was also due to it not being at least 3 TESLA.

With the CT, I note that someone here has already had one performed and sent to Dr Dake also, and he spoke of having his next CT being done in 2.0 to 2.5mm slices. So, if getting a CT, I would say ensuring a small slice will help the diagnosis. When I spoke with Dr Dake and he recommended a CT, he made certain to stress that the operator understand it is a VENOgraphy and therefore the "delay would be longer".
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Postby Sharon » Thu Aug 20, 2009 8:27 pm

My tests at Stanford were at the Blake Wilbur Bldg on a 1.5 Tesla scanner.
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Postby ErikaSlovakia » Fri Aug 21, 2009 2:28 am

Thank you for those information.
I also go for CT of jugular, sinuses and azygous next Thursday to another town as the radiologist is very interested in this.
I will tell him about what you have posted.

I just managed to get a written recommendation from a doctor so my insurance company will pay for 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
ErikaSlovakia
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Postby ErikaSlovakia » Sat Aug 22, 2009 2:55 am

CCSVI in Italian on Facebook!
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: 1115
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Location: Slovakia, Europe

Postby ErikaSlovakia » Mon Aug 24, 2009 9:34 am

So, I have these important news:
I went for CT Angiography, not for MRV.
I have the CD but I do not have results yet. I must go there tomorrow again.
They gave me the contrast injection - iodium (I am not sure if it is corect in English), then it took only about three minutes and it was over. I just saw the CD - I can not say anything because I really do not understand it. Some pictures say: thickness of image 3,0 mm. I gave the doctor the notes before but I do not know if he has read it.
I will send the CD to Dr. Simka. In any case I will go to the other hospital on Thursday for CTV because the doctor has read many information about Zamboni´s study. He knows what to look for and he is head of radiology.
It was made by some young doctor today. Well, I do not know...

They want to to start the study with Teriflunomid tomorrow. They sent me for today´s CT so they do not care if I have even 5 stenosis with reflux.
It means I do not take LDN anymore. I am scared to be without LDN but I hope I will be the same as now - EDSS 5,0.
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 » Tue Aug 25, 2009 6:26 am

So, I have more news.
I went to the same hospital as yesterday. I was supposed to start with Teriflunomid today.
I can not, because the company in France and in Prague told the doctor in Slovakia I could no,t as I have chosen OP of my veins.
I am not sorry.
They still did not have my results from yesterdays´s CT angiography. They would mail it ASAP.
It means I will start my LDN again.
A Polish patient who lives in Germany goes for the OP in September. I hope to go after him. Dr. Simka must consult it with prof. Zamboni first.
He will do the OP in Katowice, in Poland. It is only 15 minutes by train from the hospital in Tychy where I went last time.
I will have rest tomorrow and on Thursday is my CT venography in another hospital in another town.
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 Sharon » Tue Aug 25, 2009 1:06 pm

My goodness Erika! You have become the European traveller to get the testing and the treatment. I admire you for your patience.

Sharon
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Postby ErikaSlovakia » Tue Aug 25, 2009 1:16 pm

Sharon wrote:My goodness Erika! You have become the European traveller to get the testing and the treatment. I admire you for your patience.

Sharon

Hi Sharon, yes you are right.
I still have not mentioned I go for Ultrasound my jugular to Bratislava Sept 29.
(if it is before my treatment). It is the hospital for heart diseases where they refused to do MRV or CTV for me. Yesterday the CT was done just across the street. I want as many doctors as possible to see my veins. I want to make it easier for the other patients.
Yes, I also must have a lot of patience and use diplomacy.
But do not think it is my hobby to collect CD´s and visit Slovak hospitals.
On the other hand, once I wrote to Dr. Simka that if it was necessary I would go walking cross whole Russia. I really would! :D
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: 1115
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby Arcee » Tue Aug 25, 2009 1:35 pm

Erika, best of luck with it all. I admire your efforts. And every time I read your posts I smile - - there's just something about what you are doing and your spirit that puts it all in perspective. Looking forward to hearing more.
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 Needled » Tue Aug 25, 2009 1:42 pm

Arcee wrote
every time I read your posts I smile

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