Hello from Helsinki

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

Hi Turtle

Postby DigitalMunkey » Fri Sep 11, 2009 1:43 am

Sorry to let you down my friend, but im not Finnish, I just live here. Im from the UK.

My wife has the appointment with a radiologist who specialises in head and neck on Monday morning. We have instructions from Dr Simka on how the scan should be undertaken and my wife is taking them to his assistant today so that he can study them over the weekend.


Peter
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Re: Hi Turtle

Postby ErikaSlovakia » Fri Sep 11, 2009 1:53 am

DigitalMunkey wrote:We have instructions from Dr Simka on how the scan should be undertaken...
Peter

Hi!
Could you please send me the instructions from Dr. Simka? I do not want to ask him the same question.
Thank you!
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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Re: Im spreading the word as best I can

Postby CureOrBust » Fri Sep 11, 2009 2:05 am

DigitalMunkey wrote:How can she be so sure that it is an auto Immune disease?
Same way as the millions of others that believe its auto-immune. Remember, she is thinking a similar thing about you (and she posted it to you). Remember people believed that the earth was flat, the sun circled the earth...
DigitalMunkey wrote:We have instructions from Dr Simka on how the scan should be undertaken and my wife is taking them to his assistant today so that he can study them over the weekend.
ErikaSlovakia wrote:Could you please send me the instructions from Dr. Simka? I do not want to ask him the same question.
I am sure I read there was a video played at Bologna?
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Hi Erika

Postby DigitalMunkey » Fri Sep 11, 2009 2:08 am

I have just sent the PDF to Daniel here on the forum ad he is going to make it available to everyone here.


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Cureorbust

Postby DigitalMunkey » Fri Sep 11, 2009 2:11 am

Is there really a video available? We have to get hold of that no matter how. Im going to start writing and calling now.

Ill start with Dr Simka

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Re: Hi Erika

Postby ErikaSlovakia » Fri Sep 11, 2009 2:26 am

DigitalMunkey wrote:I have just sent the PDF to Daniel here on the forum ad he is going to make it available to everyone here.

Peter

Great! Thank you so much!
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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Re: Hi Erika

Postby CureOrBust » Fri Sep 11, 2009 2:38 am

DigitalMunkey wrote:I have just sent the PDF to Daniel here on the forum ad he is going to make it available to everyone here.
Its it different to the one posted at
Zamboni et al 2009 The value of cerebral doppler haemodynamics in the assessment of ms

ErikaSlovakia wrote:Is there really a video available?
I am certain I read a video of this was played at Bologna, as to it being "available" is another story.
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Re: Hi Erika

Postby daniel » Fri Sep 11, 2009 5:55 am

DigitalMunkey wrote:I have just sent the PDF to Daniel here on the forum ad he is going to make it available to everyone here.


Peter


Here is the PDF (link): The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis
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The worst possible news

Postby DigitalMunkey » Fri Sep 11, 2009 6:27 am

:cry: As I said earlier my wife went to drop off the papers ad guidelines we got from Dr Simka at her doctors office. This was to give the radiologist a chance to familiarise himself with the doppler procedure.

30 minutes after leaving the Simka documents the radiologist calls my wife to say NO WAY. He claims that he is aware of the current CCSVI research but he nor any other radiolologist in Finland have had the neccessary training to carry out the doppler procedure.

He said that he has had five calls in the past 2 days from interested parties and has had to refuse them. At the start of the call he actually thought my wife was calling on behalf of some persistent nuisance caller named Mikko, LOL

But what rally pisses me off big time is that this radiologist was not even willing to try. What ever happened to the pioneering spirit?? We are at a loss as to what to do next or where to turn.

Well folks, take care. Keep the faith

Peter
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Postby cheerleader » Fri Sep 11, 2009 7:00 am

Hey guys...
Welcome! I have the video on disc in my press packet. I'll check and make sure it's OK to host, and then put it up on You tube...
Peter,
find an interventional radiologist/endovascular surgeon at your local university. Universities have the equipment and the potential desire to study this. You do not have to start with doppler, you can go straight to magnetic resonance venography (MRV)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Ernst » Fri Sep 11, 2009 7:26 am

cheerleader wrote:Hey guys...
Welcome! I have the video on disc in my press packet. I'll check and make sure it's OK to host, and then put it up on You tube...


Splendid indeed! I quess here are lots of people, willing to see that video. Cheer, you are incredible.
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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Re: The worst possible news

Postby CureOrBust » Fri Sep 11, 2009 7:10 pm

DigitalMunkey wrote:But what rally pisses me off big time is that this radiologist was not even willing to try. What ever happened to the pioneering spirit?? We are at a loss as to what to do next or where to turn.
I found a local neurologist who specialised in stroke (ie blood flow to the brain I guess) and he was VERY informed about colour doppler examinations. Maybe give that angle a try also. One of the sonographers I spoke to said the exams listed were not performed outside of a hospital environment, so maybe also try calling the largest hospital.

Additionally, when I spoke to Dr Dake, he implied that a CT from the diaphragm to the top of the head, was less prone to operator variables than an MRV; but the radiation exposure of those do concern me a little.
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Postby CureOrBust » Fri Sep 11, 2009 7:18 pm

cheerleader wrote:... an interventional radiologist/endovascular surgeon at your local university.
Another source of people who may know people, is a phlebologist. I never heard of this field of study until all this CSVI came about. But what I have found, is that they have a number of organisations around the world (on the internet) that have international memberships. They also appear to know each other. I am currently speaking with one local guy who knows Zamboni and has spoken with Dr Simka while he was in Monaco. Phlebology appears to be a small world after all.
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Postby CureIous » Fri Sep 11, 2009 8:55 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 2:48 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: The worst possible news

Postby msa » Sat Sep 12, 2009 4:55 am

CureOrBust wrote:Additionally, when I spoke to Dr Dake, he implied that a CT from the diaphragm to the top of the head, was less prone to operator variables than an MRV; but the radiation exposure of those do concern me a little.


Are there any details available for a MRV of azygos and jugular veins like there is for the doppler procedure?
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