This Is MS Multiple Sclerosis Community: Knowledge & Support

It only takes one dedicated and open minded person to get the ball rolling, and you are the one for CCSVI. I actually learned about it on the other website I am involved with, but this is where I came to learn about it and thanks to your clear explanations and your experience I am taking my daughter to Poland to be treated.
What I learned here was a revelation and something I would never have thought of, in spite of the fact that I am always searching for answers. So thanks from the bottom of my heart for having been the first to take the chance and to catalogue your findings.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

I posted this quote on another thread -- it seems to me it should be posted here on the First Anniversary of CCCSVI. Thanks Dignan for throwing the first "pebble" when you posted the research of Zamboni. To Joan and Marie for keeping us educated and informed and to the "stenters" for their own personal contribution. You have each "caused a change through a single and simple act."



Sharon

This really is an amazing thread to read. I'm currently at about mid March 2008. Marie and cure or bust have just had thier first scans and cheerleader is in discussions with (I'm assuming Dr Dake). Knowing what I know now and seeing how it all took place is actually very exciting. Seeing the snowball start to roll and how the pushing was done so to speak.

It's also cleared up some misconceptions I had. I thought the study of 16 people from Buffalo and Italy had only just begun recently, but posts by wobbly were nearly a year ago. I hope wobbly is still doing well and can't wait to see if there are more posts by him/her. I also can't wait to see how some of the other pioneers were dx'd and treated in the pages to come. Each person's journey is compelling and exciting to read about.

Congrats for the many successes so far and for those to come!
Dialed_in

Dialed....
so glad you're reading thru the thread. Marie's often said, it's shorter than a novel and just as dramatic!

Yes, the Buffalo/Ferrara study was going on since January 2009, but was top secret. Wobbly has signed confidentiality papers, and that's why he/she is quiet.
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

It is sage.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

It certainly is dramatic. I'm part way through page 34, beginning of April '09. You're husband isn't a drinker, as a doctor suggested, instead there are more effects from CCSVI that cause liver problems. Or something like that, I can't seem to wrap my head around the terms you folks are throwing around like normal conversation. You are obviously all well read and understand these terms much better than I. Marie sounds like she could pass as a doctor when she gets going. Anyways, Dr Zamboni is about to do a presentation and I'm guessing a new ccsvi forum(this one) is about to be created. Your husband will be seeing Dr Dake soon and Holly just joined the discussion.

25 more pages to go.

getting MRV in upstate NY (Albany)....Jan. 5th 2010.. thanks to my wonderful doctor...i am just scared that they won't read it right...what to do?????

LEETZ

I would start by sending them the protocol by mail. Let them know you're mailing it in and then they can be prepared and hopefully won't think you're trying to tell them how to do their job.

Ha! Maybe finish it before the new year. Yeah, my Jeff didn't drink. What we finally figured out was that he had an hypoxic (lack of oxygen in the brain) incident. He was at high altitude for a week before his first flare, and the jaundice, liver enzymes, petechia and new MS lesions were the markers. Took Dr. Zamboni's discovery to put the pieces together- when we saw Jeff's jugulars, it all made sense. Lots of folks present in their MS flares with elevated liver enzymes....my husband's neuro rolled her eyes, and told him to stop drinking. I got mad and started reading.
Happy New Year!
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

to Leetz
I had an MRV done last month and they did not look for the right thing. It came back that there are no thrombosis. great except that is not what they were supposed to be looking for.. good luck and if you find someone who knows what they are looking for and can read the scan properly let me know. I have the dvd of the scan and would like to have someone read it.

The company which has designed the new doppler ultrasound machines used in Dr.
Zamboni's diagnosis process for CCSVI is holding training seminars in CCSVI detection-

FROM CTV.ca
"Meanwhile in Italy, one of the companies that manufactures the ultrasound machines used in the testing for CCSVI, is beginning to hold training sessions for doctors and technicians who want to learn the novel technique for scanning the neck and head.

One training program is being held this week at the University of Ferrara with technicians who developed the tests, and with Zamboni. A second session is planned for March."

Contact information for the course is available through: Claudio.Buffagni@esaote.com

http://www.esaote.com/modules/core/page.asp?p=HOME

We have one UK operator on the March training course, the managing director of the UK branch of the company has asked me to keep things under wraps in the UK at the moment because of the negative attitude of neurologists here. So please keep it low profile if you are living in the UK.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

This is very important advice from Dovechick. We have folks all over the world going directly to vascular surgeons and interventional radiologists and not posting their contact information on the internet. Most (but not all) neurologists are not behind this, and many will try to intervene if they learn of diagnosis/treatment- Sad truth.
Take this information to the vascular/interventional radiology depts. of your local universities. They understand the importance of venous health.
I took Sharon's post on the doppler training course and put it up on Facebook. Hopefully more diagnosticians will be interested.
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 haven't used aspirin, but my bladder is a lot less spastic if I take 2 ibuprofen. I'll give aspirin a try as well.

small jeg...

thank you so much for your post..i will post after they test and read it...so good that you have the copies...check into poss. interventional radiologist's to take a look at it...maybe some one here can chime in???

Leetz

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...