CCSVI and Slovakia, Europe

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

Postby peekaboo » Wed Aug 05, 2009 4:52 am

this is very exciting...you go girl :D
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 3:00 pm
Location: Arizona

Advertisement

Postby mormiles » Wed Aug 05, 2009 8:24 am

Hooray for you Erika! Scheme, manipulate, maneuver everyway you need to in order to win this struggle. Go, go, go!
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
mormiles
Family Elder
 
Posts: 215
Joined: Tue Mar 07, 2006 3:00 pm
Location: 75098

Postby cheerleader » Wed Aug 05, 2009 9:01 am

ErikaSlovakia wrote:Dr. Simka wants to do the ultrasound this Friday. I must travel tomorrov, so I go to get ready foth the trip to Poland.

He even speaks Slovak and Czech! Unbeliavable!
I must run to the bank to get some polish money.


Go, go, Erika!!!! Really excited for you. My favorite expression (may not translate well to Slovak):
God wants us to win the lottery, but He needs us to buy a ticket first.
You are making things happen...all good wishes to you as you go to meet Dr. Simka. Send him our regards from TIMS-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5092
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby ErikaSlovakia » Wed Aug 05, 2009 9:36 am

Hi Cheer!
Thank you! You are right with the ticket and lottery.
Yes I will give him regards from TIMS.

The trip is really exciting because I still do not know the place where to go in the town Tychy. The town looks very small, I am sure people will know. Slovak language is similar to Polish. I am sure I will be OK.
ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby ErikaSlovakia » Wed Aug 05, 2009 10:31 am

I admire Dr. Simka a lot. I asked him to send me an SMS because I did not know where to go exactly in the town. He was so nice he did it and it is already 8:30 pm in Slovakia and in Poland as well.
I alwas talk nice about my country but I must say this does not happen here. Everything is big problem. People still live in the old system. It is hard for me to live here. Well, but it is another story. I just wanted to say everything goes just perfect so far. I am very happy. I am going to try to find some hotel near the hospital.
ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby Ernst » Wed Aug 05, 2009 11:00 am

Im keeping my thumbs up for you and wishing you the best. You will get very interesting friday. I quess you have now support from many countries, Usa to Finland :D Net is wonderful thing sometimes..
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
User avatar
Ernst
Family Elder
 
Posts: 294
Joined: Sat Nov 15, 2008 3:00 pm
Location: Rovaniemi

Postby Needled » Fri Aug 07, 2009 7:15 am

Hi Erika, As close as I can figure, it's Friday afternoon, about 5:00 p.m. in Poland. Hope your traveling went well and your tests are done by now. I know so many of us are anxious to hear about your trip. Please post when you can.
User avatar
Needled
Family Elder
 
Posts: 361
Joined: Wed Jan 14, 2009 3:00 pm
Location: Connecticut

Postby Arcee » Fri Aug 07, 2009 8:11 am

Erika, thinking of you and all the energy you are bringing to bear on this. Here's hoping the day has brought useful information.
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 3:00 pm
Location: Massachusetts, USA

Postby Ernst » Fri Aug 07, 2009 8:13 am

Im also very eager to hear Erikas trip to Poland. Really hope that everything has gone well and continues go good.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
User avatar
Ernst
Family Elder
 
Posts: 294
Joined: Sat Nov 15, 2008 3:00 pm
Location: Rovaniemi

Postby ErikaSlovakia » Fri Aug 07, 2009 11:59 pm

I am back home from Poland.
Doctor Simka sent me these result via e-mail:

"Hello Erika,

As I I have said you in Tychy, the interpretation of your exam was rather difficult. And most likely an examiner who was not familiar with hemodynamic venous sonography (assessment of function - and not only of anatomy) will find nothing but a mild stenosis in your right internal jugular vein. Thus, the result of examination would be as follows:

There is a stenosis in the middle part of right jugular vein (the vein in this area has diameter 2-4 mm). Above and below the stricture the vein is normal. There is no reflux in right jugular vein.

No stenosis or occlusion were found in left jugular vein. There is clinically insignificant reflux in left internal jugular vein.

There is a maintained flow through vertebral veins and there is no reflux in the assessed veins.

On the contrary, when hemodynamis assessment is applied, the result look like that:
There is a stenosis in the middle part of right jugular vein (the vein in this area has diameter 2-4 mm). Above and below the stricture the vein is normal. There is no reflux in right jugular vein.

No stenosis or occlusion were found in left jugular vein. Yet, at the entire length of the vein there is a reflux, which follows the breathing, and the reflux time is 0.2-0.4 s. There is significant (!!!) asymmetry of the volumes of blood flowing through internal jugular veins. In the supine position the flow volume in the right vein is ~300 ml/min, while in left jugular vein it is ~18 ml/min. Moreover, right jugular vein in the sitting position collapses only partially.

There is a maintained flow through vertebral veins, both in the supine and sitting positions, and there is no reflux in the assessed veins. Yet, in the supine position the flow through right vertebral vein is excessive.

Deep cerebral veins - there is an asymmetry of flow: the flow through the veins of right hemisphere is significantly larger than that at left side. In addition, flow through the veins at right side is cyclic, following the breathing.

Interpretation of the examination

Besides of the visualized stenosis of right jugular vein, there is a high suspicion of a high-degree stenosis or occlusion of left jugular vein, which might be localized high, at the base of skull or in the jugular canal (alternatively, an anomalous anatomy of venous sinuses with abnormal drainage to left jugular vein should be considered). There is no sonographic signs of abnormal drainage in the azygous vein territory.

Yet, there are only few doctors familiar with such sophisticated venous sonograp ahy, though. and you can find them mostly in Europe. This may explain problems with proper sonographic testing in American patients.

I think people at TIMS forum might be interested in the above-described conjectures.

M.Simka"

They still do not do the operations in Poland. Dr. Simka believes they would be ready in December. Even Dr. Zamboni has problems with stents. Do you kow what kind of stent Dr. Dake uses? Dr. Simka believes there is a stenosis also on my left side but inside of my head. Even Dr. Zamboni told him that people with vision problems have it there. My left eye is not OK since 2004.
It took me 7,5 hours to get there. I spent a night at a hotel and I met Dr. Simka at 9 am on Friday. Dr. Kostelecky was doing the ultrasound and Dr. Simka was giving him directions. It tokk 1 hour. They really love the job. It was like they were looking for the diamond.

My next step is to find the phlebography in Slovakia. In case he finds some doctor from Slovakia he will inform me. I like him. He is a real man of action.
If you have any questions just ask me.

ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby ErikaSlovakia » Sat Aug 08, 2009 12:07 am

Oh, I lmost forgot. I gave the regards from TIMS to Dr. Simka. He was glad. He also sends regards to TIMS.

Erika
ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby muse » Sat Aug 08, 2009 12:23 am

Brave girl Erika!!!:D Please come over to our place http://csvi-ms.net/forum/ in Europe as well and tell the people there your story too!
Best
muse
User avatar
muse
Family Elder
 
Posts: 180
Joined: Wed Aug 05, 2009 2:00 pm
Location: New Zealand

Postby ErikaSlovakia » Sat Aug 08, 2009 12:42 am

Hi Muse,
yes, yes, I am just working on it.
Erika
ErikaSlovakia
Family Elder
 
Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby Ernst » Sat Aug 08, 2009 2:58 am

Very good and informative raport from your Poland-trip. Just red it.. and gonna read it again. Dr.Simka seems to be top expert with veins, big rispect for him.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
User avatar
Ernst
Family Elder
 
Posts: 294
Joined: Sat Nov 15, 2008 3:00 pm
Location: Rovaniemi

Postby Rokkit » Sat Aug 08, 2009 12:36 pm

ErikaSlovakia wrote:Yet, there are only few doctors familiar with such sophisticated venous sonograp ahy, though. and you can find them mostly in Europe. This may explain problems with proper sonographic testing in American patients.


Of course I had to check flights. Apparently you can fly round trip from NYC to Warsaw for around $600, which is astounding in itself. Would I be crazy to get a sonography from Dr Simka?

Rokkit
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 2:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service