This Is MS Multiple Sclerosis Community: Knowledge & Support

This might be important information, as many of us check the conferences: http://www.ptf.org.pl/?p=p_33
This is Society of Polish Phlebologists, date: 11-14 of March 2010
place: Poland - not far from Czech borders,
main issue of the conference: endovascular treatment of sicknesses of veins

Erika

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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

Erika thank you so much for this link!

I'M NOT A DOCTOR Could "ALL" people go to there doctor's & DEMAND an MRV or alternatively Midleton Park Hotel:Wednesday 2nd December Life Line Screening:1800 93 60 35 Stroke Screening Heart Rhythm Screening Abdominal Aortic Anerysm Screening Peripheral Aererial Disease Screening &
Abnormal Bone Mass Density: also avaivable.
Slainte Mo Chara
Edser & Anna

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Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

Edser, that last post is confusing. Could you explain more ?

I've sent you a PM
Slainte Mo Chara
Edser & Anna

_________________
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

I suggest that you don't do that because an MRV has to be done the right way to show CCSVI. If a lot of people go around demanding that doctors who do not understand this and don't have any clue what they are doing do an MRV ,what is going to happen is a lot of MRV's that show "nothing" will suddenly be generated.

What we need is doctors who are open minded enough to
1, make the effort to understand this
2. get a feeling that this is real and
3. actually LOOK for the the problem with the diagnostic test don't just do the test to prove to you that you are wrong.

If you can't find that interested doctor then it will be best to go to one who is already understanding this information and having success.

At this point in time it is really important to be consulting professionals who believe this is a possibility who have the skill and desire to use the scan to find it, not just to prove you wrong. We can't prove it to doctors who don't think this is real with an MRV that they themselves do.

As soon as the data out of Jacobs is released, assuming it is as good as it is supposed to be, many more doctors will know that this is something to learn about and to learn to do correctly. They'll know where and how to look for the stenosis and they'll see it.

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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

100% of people with MS have blockages of some description.
What's the problem with people getting an MRV to rule out that they dont have any blockages regardles of them being healthy or possiably having a blockage which may at some later stage cause them to suffer,ie:Stroke screening,Heart Rhythm Screening,Abdominal Aortic Aneurysm Screening,Peripheral Arterial Disease Screening.
Slainte Mo Chara
Edser & Anna

_________________
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

Edser-
What is wrong is that doctors have never considered looking at the jugular veins before. Never. Doctors have not considered the jugular veins important. Doctors will dismiss this out of hand- unless they read and comprehend Zamboni's findings. Marie is right-

I sent Zamboni's research to other well-respected endovascular doctors beside Dr. Dake. They replied that this was NOT an area they had ever scanned. Never.

Dr. Dake explained this to me....we, as patients and caregivers, may understand this 100%. We are ahead of the doctors. Dr. Dake could not believe that NO ONE before Zamboni had considered the venous return from the brain as part of neurovascular disease. It is unbelievable, but true.

Don't demand....it doesn't work, and it makes you no friends. Suggest, cajole, ingratiate (bake a cake like ozark!)- take the research to doctors.
good luck,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I'm curious about this actually, as it has been mentioned before. Which doctors have not considered jugular veins important? Vascular specialists or doctors from outside disciplines? It seems somewhat odd to consider a vessel with 10 or more millimeters diameter irrelevant.

I think people are misunderstanding me.Yes we have MS,this much is true.But for the normal Joe Soap that dosn't have MS.Wouldn't it be nice to have peace of mind & to find out that there are no blockages obstructing there blood flow,ie:Heart Attack's or even for us not to have scares on our brains.Both my parent's have gone to meet the big fella(GOD) & i and other indivual,would like to live a happy & peacefull life with the one's they love.
Slainte Mo Chara
Edser & Anna.

_________________
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

I never got the pm, but that's ok. Sorry about the football...you were robbed.

Erika, what a privilege seeing a video of you during your liberation procedure! I guess you must have been nervous, but you look great!
The first time I saw clearly what the books mean by "ringlike" stenosis...
Your docs are talking so much during the video, I got really curious what they're saying, too.

Also cool to see how young Simka appears to be. Looks like he has quite a few years of peak-productivity left!

Hi!
I really was not nervous at all! I am nervous only before an exam at the University but I did not have to do anything, I did not have to think about anything, I did not have to manage, I did not have to organise, I just had rest finally after very long time and I enjoyed it - I think you can see it on my face. I am not joking, I repeat it was a real holiday for me. Finally I could rely on couple of people. It is not normal in my life. I was not responsible for anything, I did not have to find solutions for any problem. I did not have to do the procedure, well lucky me they did it.
Moreover I was happy - as you know not many people in this world had the chance to do this procedure so far.
I just was thinking: "Oh, Erika, you are very lucky!
Erika

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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

Edser, don't forget that all these other problems you list have to do with blockages in arteries, not veins. It is a huge difference. The stenosis and other blockage lesions seen in CCSVI don't have anything to do with the buildup of plaque in arteries, for example. Also, I don't think an MRV could be used to diagnose any of those other problems because the MRV looks specifically at veins.

Just trying to help, bro!

well, that's what the docs will say. They will maintain that the collaterals do a fine job of getting the blood back to the heart. That is what they say to folks who have complete jugular ligation and the blood is rerouted thru VVs.
http://www.ncbi.nlm.nih.gov/pubmed/18382980
No mention made of oxygenation or perfusion time. Seriously, this has never been studied before in relation to neurovascular health. Just one study on transient global amnesia. Search pub med. That's why the doctors don't understand it. I ain't makin' it up

Back OT to Dr. Simka...the fabulous. Hey, maybe he'll come on line and back me up...please, Dr. S???
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS