CCSVI and Slovakia, Europe

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

Postby ErikaSlovakia » Wed Aug 12, 2009 12:04 pm

cheerleader wrote:Stay strong, Erika. We're sending you our positive hopes and energy from afar. You have started this journey, and it will be of benefit to many, many people.

"The journey of 1000 miles begins with one step." Lao Tzu

cheer

Thank you for the energy. Do not worry. I will not give up!
I also know I do it for many others. I am like a power plant.
Erika
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Postby Rokkit » Wed Aug 12, 2009 1:42 pm

ErikaSlovakia wrote:I am like a power plant.


You can say that again. Once you get yourself taken care of, I'm going to hire you to be my private health advocate. :-)

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Postby mrhodes40 » Wed Aug 12, 2009 2:16 pm

Erika, there will come a day when this was all something you accomplished.... :D
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 ErikaSlovakia » Wed Aug 12, 2009 11:56 pm

Rokkit wrote: I'm going to hire you to be my private health advocate. :-)

Rokkit

OK, Rokkit, I agree :D
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Postby ErikaSlovakia » Thu Aug 13, 2009 12:26 am

One step closer again.
On Monday, August 17th I must call Dr. Madaric, PhD. - Angiologist, from the National Institute of Cardiovascular Diseases in Bratislava. He will give me an appointment for a consultation. I hope to get an exact date for the phlebography during the consultation. He is on holiday this week.
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Postby ErikaSlovakia » Mon Aug 17, 2009 12:23 am

I just have called the angiologist in Slovakia. His nurse asked me to send him the details by fax. He will call me and he will perhaps do the phlebography. If not I will contact another hospital.
He was on holiday last week so I had to wait.
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 » Mon Aug 17, 2009 3:59 am

ErikaSlovakia wrote:He will call me and he will perhaps do the phlebography.
When you say phlebography, are you speaking of a CT Venography? and is it with or without a catheter?

Sorry if you have answered this question before. Just to be clear, the "X-Rays" seen in Zamboni's documents, are what I would call a CT Venography using a Catheter.
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Postby ErikaSlovakia » Mon Aug 17, 2009 4:26 am

I have the same question. But so far as I know, phlebography at least in my country means: catheter, contrast injection and xray.
But as they try to improve the technology a lot, it might be CT.
As soon as I know more I will post here.
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 » Mon Aug 17, 2009 4:33 am

CureOrBust wrote:When you say phlebography, are you speaking of a CT Venography? and is it with or without a catheter?

I forgot something. Look here: http://www.nusch.sk/en/department-of-di ... radiology/
Do not worry it is in English. It is the hospital where they may be do it for me. The web site is not updated. I know for sure they had plans to use MR and CT as well. But I am not sure.
I would prefer catheter with the contrast injection as it is very clear. Well, I will inform you later.
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 ErikaSlovakia » Tue Aug 18, 2009 6:15 am

One step back. Or may be not?
I just had a phone call from the hospital in Bratislava. They do not want to do the phlebography.

They will only do the ultrasound September 29. I will go there, of course.
Anyway, the doctor wants to see the research of prof. Zamboni, so I will send it there.
Of course, I am not going to wait. I will contact Dr. Simka again and I will also contact another hospital in Banska Bystrica (Slovakia).
Anyhow, I still can have the MR Venography in Vienna.
Well, at least I will inform many doctors.
Last edited by ErikaSlovakia on Tue Aug 18, 2009 7:26 am, 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
ErikaSlovakia
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Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby CureOrBust » Tue Aug 18, 2009 7:14 am

ErikaSlovakia wrote:They will only do the ultrasound September 29. I will go there, of course.
...
I will contact Dr. Simka again and ...
I found a very well versed ultrasound specialist in Australia. He had no problems with the exams as noted in Zamboni's papers. He knew all of them, and said they were simple. He is a neurologist specialising in stroke & ultrasound. However, when he got his sonographer to run the tests on me, they only found that I failed one test, not two. I had a reflux in my IJV. They lost interest pretty quickly.

If I had to do it again, I would get some pointers / instructions for the exams directly from someone like Dr Simka, just in case there is something that may be considered standard practice at your clinic, that is different to the way its done in Zamboni's labs.

I think you are aiming for the correct path, in that you want the phlebography. The doppler will only tell you that you are like the hundreds of other MS patients who also failed, while the other is one step closer to planing the treatment course. (if of course they find something)
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Postby ErikaSlovakia » Tue Aug 18, 2009 7:36 am

I already know I have stenosis and reflux. Dr. Simka made the Doppler to me.
I think they find nothing and I am just loosing my time.
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 18, 2009 12:10 pm

GOOD NEWS!

A Slovak doctor sent me an e-mail. They will do the phlebography in another town for me, but it is still not sure. At least they are interested.

Dr. Simka sent me also an email. It is almost sure they can do MRV in Poland as a part of a study for me. He will inform me later.
As I plan to have the procedure there, I prefer it is done there.

So, I am getting closer again :D :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: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby Needled » Tue Aug 18, 2009 12:17 pm

Hang on tight, Erika. You're on quite a ride!
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Postby ErikaSlovakia » Tue Aug 18, 2009 12:27 pm

Thank you!
I am so sad because of Holly. I was happy and her family is sad.
I feel so stupid. I am so sorry...
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: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

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