Anyone been to Stanford who has no CCSVI?

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

Anyone been to Stanford who has no CCSVI?

Postby Ana » Thu Oct 29, 2009 12:57 am

Well, the question sounds silly so I must explain it.

Apart from me another german woman had her veins checked by Dr. Simka in Poland via doppler without finding any problems in the jugulars.

But at least in my case Dr. Schelling said after seeing my MRT's that I have quite definitely a problem with the veins concerning the lesions in my head (I also have lesions in the spine but the azygos vein can't be scanned via doppler).

It might be that my problems are only temporary e.g. when I bend my neck or that the whole veinal system is bad. I also read about 2 persons who have a veinal problem not shown in the doppler because the jaw bone hides it.

So I wonder if there are also people who travelled in vain to Stanford because they don't have any problems with the veins. Or is that not the case because the MRT SWI is more accurate? (I'm going to do a MRT SWI, too.)

And another question: Do they check the azygos vein in Stanford, too? I ask that because it lies deeper and Dr. Schilling says that it is actually quite hard to examine it with the MRT SWI.

Thanks for your answers!
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Postby Sharon » Thu Oct 29, 2009 6:55 am

Hi Ana -
You wrote:
So I wonder if there are also people who travelled in vain to Stanford because they don't have any problems with the veins

There have been others treated at Stanford who do not post on TIMS, so there is no way of knowing how many, IF ANY, that Dr. Dake has tested and found stenosis. There have been two TIMS members who were tested with no procedure. http://www.thisisms.com/ftopic-8368-0.html
You wrote:
And another question: Do they check the azygos vein in Stanford, too? I ask that because it lies deeper and Dr. Schilling says that it is actually quite hard to examine it with the MRT SWI.


Yes, Dake checks the azygous with the MRI/MRV testing and then rechecks again during the procedure.

Sharon
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Postby Ana » Thu Oct 29, 2009 10:13 am

Hello Sharon,

thanks a lot for your answer! And wow, you're 66 as I read in the linked thread! Well I don't intend to flatter you but you sound a lot younger. :D So probably you're young at heart I guess.

I hope that the two persons who got the examination but not the procedure will post something about the reasons in this thread or in the other thread. Anyways this makes me more optimistic as it seems that more people have been tested in the USA than by Dr. Simka and you don't have so many negative results. So my guess might be right that the results have also something to do with the examination method, i.e. that the MRT SWI is more accurate.

And thanks for the answers about the azygos vein. :)
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Postby cheerleader » Thu Oct 29, 2009 10:29 am

Ana-
just a quick correction, Dr. Dake uses MRV-magnetic resonance venography at Stanford. It allows him to see the veins in 3D. The stenosis are VERY clear.
You can see examples of MRV technology on Dr. Haacke's website.
SWI is susceptibility weighted imagery...it cannot see the veins, it only measures iron deposed in brain tissue.
There are pics of both methods here:
http://www.ms-mri.com/

Yes, Sharon is very youthful (although, from where I stand, 66 isn't that old!) She also stays very active and positive...two things we can all learn from :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Ana » Thu Oct 29, 2009 10:52 am

Hello cheerleader,

thanks for the answer. Yes I guess I mixed things a bit up because they did all these things in Jena with riader and so it was just one thing to me. But I should be more accurate because if I don't get any reaction to my mails from Jena I would have to find another place to do the examinations. And I doubt whether they know about Prof. Haacke's work at another german university as well as in Jena so I would have to explain what I need exactly.

By the way I'm 44 so 66 isn't so far... :wink:

Ana
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Postby MaggieMae » Thu Oct 29, 2009 11:46 am

Ana,

Look up the profile of the two people who did not have the procedure. You can read their experiences.
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Postby Sharon » Thu Oct 29, 2009 2:15 pm

Thanks Ana and Cheer for the "youthful praise". I do try to keep active physically and mentally and I am the "glass 1/2 full" type of person, --- I pick my battles :x -- I do not sweat the small stuff. :wink: I have a wonderful, supportive family which is a blessing I count everyday. Age 66 is a number - that's all. It is how one approaches their life and lives it that counts........ :D :D

Sharon
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Postby mrhodes40 » Thu Oct 29, 2009 3:40 pm

Island Girl was one of them and I know the details, she had a brachiocephalic abnormality that Dr Dake was not sure needed repair or not; after investigating it further later, looking from other angles etc, he thought perhaps he should have done the repair and offered to go in and do it. She has no other stenosis, just the BC abnormality. She decided not to have it repaired but to investigate some other pathways (she has slightly atypical MS anyway-30 years and still walking no problem and also a gluten disease in all her family members-she may have gluten ataxia) Her plan was to check out these other angles and go back with me on my later follow up and see what she knows about her situation as well as seeing what Dr Dake knows about brachiocephalic things by then. So far she has not done any gluten testing, which tells you a little bit about how mild her MS is. I have no final chapter to that story there.
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 Ana » Thu Oct 29, 2009 5:50 pm

Thanks Mrhodes40! So Island Girl is the woman Dr. Simka told me about after my negative test result. He told me that there is also a woman in America who was tested negative and who could suffer from gluten ataxia. He gave me the tip to test this in my case, too, because I'm also a bit atypical as I have "only" leg problems, no fatigue, heat intolerance, tinnitus, bladder issues etc.. But unfortunately I don't have a gluten ataxia as I made the tests. (I say unfortunately even though it would be hard to avoid drinking beer in Germany. :wink: )
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Postby ErikaSlovakia » Fri Oct 30, 2009 1:18 am

Hi Ana,
yes, I remember Island Girl. You can find her posts here. When I was having my Doppler by Dr. Simka, I was thinking about her because it was so fresh. I was there in August, so try to find it.
Good luck!
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 Ana » Fri Oct 30, 2009 4:49 am

Hello Erika,

yes, I also found the postings of Coach who is the other person with a negative test. (Btw. thanks MaggieMae for your post to look for the profiles.)

In my case I was thinking about a wrong diagnosis as I found a link with a lot of diffent differential diagnosis and they claim that every 20th "MS"- case is a wrong diagnosis. But then Dr. Schelling said after seeing my MRT's that he is quite sure my lesions in the head have their roots in a problem with the veins. So I'm keeping my fingers crossed that the MRT SWI will be more clear and that I'll find a place being willing to scan me. At the moment Jena seems to be a problem as they don't answer so I'm going to contact other places, too.
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Re: Anyone been to Stanford who has no CCSVI?

Postby Sofabed » Fri Oct 30, 2009 8:07 am

Ana wrote: (I also have lesions in the spine but the azygos vein can't be scanned via doppler).



Hi all.
My first post, this forum is huge :D , anytime something to say.. sorry if I missed something or if I start from the wrong place, but instead of never beginning.. I just start from somewhere.
I'm from Italy, Zamboni's patient.
I start from here because happened that I read those words.
I don't know if depends only on the operator skills or also on the kind of doppler machine, but with the doppler you do can scan the azygos, or at least they do in Ferrara.
greetings
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Re: Anyone been to Stanford who has no CCSVI?

Postby Boreas » Fri Oct 30, 2009 10:13 am

Ciao Sofabed,

great to have another patient from Italy here. Could you tell us a bit more about your case and how much the "liberation procedure" changed your condition (if so)? I'm sure most people on this forum would be delighted to hear your story.

Greetings

B.
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Postby CRHInv » Fri Oct 30, 2009 10:17 am

Welcome Sofabed!!! We are very glad to have you here. Tell us more about yourself. You can start your own thread if you like, or post in the patient tracking sticking or the patient tracking in Italian! We would love to hear your history and experiences. Don't let the size of this place worry you. Everyone is very nice and very helpful.
Again, Welcome!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby radeck » Fri Oct 30, 2009 10:30 am

Dear Sofabed,

welcome to the TIMS forum! We need your help. With the help of an Italian speaking friend, I set up a "scheda forum" especially for Zamboni's patients, so that they can share their experiences. It is here:

http://www.thisisms.com/ftopict-8537.html

If you could post an entry about yourself, and know any other people who received the liberation procedure and would be willing and able to post, that would be really really important to spread the word! There's also an english equivalent of the page at:

http://www.thisisms.com/ftopict-8346.html

Good to meet you and I hope to hear more from you.

Thanks,
Radeck
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