I'm back from BNAC and I have CCSVI !!!

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

Postby whyRwehere » Sat May 22, 2010 12:35 am

Good Luck O-Canoer!
When your neuroradiologist goes in, I wonder if you could ask him to investigate other areas to see if all is normal, or if anything else is damaged/missing. When do you expect to be treated??
Why
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Postby costumenastional » Sat May 22, 2010 4:04 am

I'm back from BNAC and I have CCSVI !!! she says.

Of course you do. What did you expect? The odds where always in your favor :)

Good luck and thank you for sharing friend.
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Postby Donnchadh » Sat May 22, 2010 4:49 am

BNAC....are they accepting patients for testing? If yes, what are the contact details?

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Postby ozarkcanoer » Sat May 22, 2010 6:42 am

I just want to remind everyone that Dr Zivadinov is doing CCSVI research at The Buffalo Neuroimaging Analysis Center (BNAC). Across the hall from BNAC is the Jacobs Neurological Institute (JNI). These two organizations are 5 steps apart !! Dr Bianca Weinstock-Guttman is at JNI. Remember Dr Z and Dr W-G were featured in the original CTV-W5 documentary. Currently they are the only research site in the USA that is intensely researching CCSVI. I was able to walk through a big room of researchers who were all very busy writing software and analyzing data. What a wonderful thing to see. The CTEVD study and the CRET are taking place at BNAC and they will be doing research on the procedure.

The study that I participated in is the self-pay CCSVI testing program. BNAC is building a database of all participants. My data will be included in the database with my name replaced by a number so I will be anonymous. But for my money I was tested by the best team in the USA and I have the reports and CDs on my desk right now. I can see the "flap" in my left IJV but my husband had to email Dr Z to get the right image numbers so we could see the stenosis.

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Postby wobbly » Sat May 22, 2010 7:50 am

they r an unbelievable crew / dr guttman is very special / dr Z is relentless / for once it is good 2 be in buffalo/ i no that this treatment option is coming / red tape/ thats all / PEACE :) :) :)
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Postby ozarkcanoer » Sat May 22, 2010 9:55 am

Hi wobbly !!!

I am so sad that I didn't have a chance to meet you when I was in Buffalo :( . But Pam told me about the softball game ! I hope you are well and I am wishing for the very best for you !

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Re: I'm back from BNAC and I have CCSVI !!!

Postby pegmegrund » Sat May 22, 2010 10:42 am

ozarkcanoer wrote:But the good news is that I have CCSVI !! I had a wonderful experience and believe profoundly that Dr Zivadinov and his research team are working very hard on CCSVI and will give us the answers we deserve with real scientific answers about the relationship between CCSVI and MS.

...

I know that one of the two also tested positive for CCSVI but I will let her tell her own story.

...

I also got some good advice from Dr Weinstock-Guttman who is the best human being and MS neurologist. I wish I could see her again. I will tell more later.


I was at BNAC this past week as well...

I agree with all that OC said above! It was great to meet others who were there for testing, as well as to share a beer with Wobbly!

As OC mentioned, I also tested positive for CCSVI.

I'm on the west coast, and am wiped out from the trip...

I'll post more later. I have photos, and many stories... I've always wanted to write... maybe I'll start a blog to follow my CCSVI journey, which has just headed down a different path...
Last edited by pegmegrund on Sat May 22, 2010 2:23 pm, edited 1 time in total.
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Postby ozarkcanoer » Sat May 22, 2010 11:09 am

My next step !!

This coming Monday I will be dropping off copies of all the CDs of my MRI, MRV and Doppler ultrasound at my neuroradiologist's office. Then on Monday May 2nd I have a meeting with him at 8:00 AM !!! What will happen after that I don't know.

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Postby NormB » Sat May 22, 2010 11:49 am

Best of luck Ozark, I hope your neuro is open minded unlike mine
Dr Freedman.


Take care



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'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Postby Rose2 » Sat May 22, 2010 11:50 am

Ozark,
Did Buffalo review all of your reports and visual scans with you? Did they point out the areas they assessed as problems? Can you show those places to your next MD or it is probably all in the reports. I see?
No treatments going on at Buffalo?
Hope you are recuperating.
Rose ;)
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Postby Rose2 » Sat May 22, 2010 11:55 am

pegmegrund,
I guess the same questions as for ozark.
what tests did they do? No venography? Can you see the status of the Azygos? Will they track you also as you find treatment for your CCSVI.?
Do they make any treatment recommendations? refer for treatment?
Just wondering.
Thanks, Rose ')
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Postby ozarkcanoer » Sat May 22, 2010 12:48 pm

There was no testing of the azygous. They did review the results with us and we have all the CDs with all the images from the MRI/MRV and doppler ultrasound. I have a picture of my "flap" in my right jugular vein. Unfortunately so much was going on we forgot to ask to see a picture of the right jugular vein and there are so many images on the CDs that we can't figure it out. We sent a message to BNAC to clarify this and probably won't hear until next week.

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Postby Rose2 » Sat May 22, 2010 1:17 pm

ozark, There are written reports that go with all tests. Just like the Radiologist's written report to go with your regular mri at home.
You probably don't have those Reports yet, they take a few days to get out but be sure to get them before you see the MD. Just my idea. Rose
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Postby ozarkcanoer » Sat May 22, 2010 1:26 pm

Rose2, I have the written reports. The BNAC crew had to work long hours from Wednesday to Thursday to analyze the data so I could have the reports. The reports do say I have a flap in the left IJV and stenosis in the right IJV. My problem is that I have an image of the flap from the doppler ultrasound, but am unable to see am image of the stenosis. My husband and I looked but there is just too much data for us to understand.

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Postby Rose2 » Sat May 22, 2010 1:30 pm

ozark,
oh, good. glad you got the data. and yes, there is so much data that is just Greek to me. Let the MDs read all of it. Sounds like you guys got turned inside out! Hope you wore your clean underwear!
Rose :)
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