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

ozarkcanoer · Post by **ozarkcanoer** » Fri May 21, 2010 1:33 pm

Hello TIMS. We arrived home just about 45 minutes ago from Buffalo after two long days of driving. 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 will tell you all more later after I have had a chance to catch my breath since this has been a very exhausting week for me and my husband. We met two other people at BNAC who were also tested this week and had dinner with them on Tuesday evening. I know that one of the two also tested positive for CCSVI but I will let her tell her own story. The other person, a man, left before we could talk to him. Anyway, my next step is to meet with my neuroradiologist... I already have an appointment for the week after next. 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.

ozarkcanoer

thisisalex · Post by **thisisalex** » Fri May 21, 2010 1:41 pm

congratulations on your malformed veins mate

prairiegirl · Post by **prairiegirl** » Fri May 21, 2010 2:26 pm

Great for you, OC. I have been a reader here for a longer time than I have been a poster... so I know that you have worked hard to get tested. Hope your treatment is a great success for you!

shye · Post by **shye** » Fri May 21, 2010 2:36 pm

happy for you Ozark

waiting to hear the details...

Rose2 · Post by **Rose2** » Fri May 21, 2010 2:41 pm

Sounds like you had a wonderful trip!! Hope to follow your adventures and can't wait for your update! Go rest!!
Rose ;)

Zeureka · Post by **Zeureka** » Fri May 21, 2010 3:08 pm

Orzak our great canoer!...Very happy for you!!!

Somehow amazing that noone in the start believes that CCSVI could ever be found on themselves..(kind of protective reaction maybe - at least was for myself - not to get disappointed, but in the end noone actually gets disappointed

)) for me was the same, although already believed strongly in CCSVI...and you've been sooo long on this forum!

Really happy that you finally got your doppler diagnosis and with such a professional team as that of Buffalo! Well done !!!

mshusband · Post by **mshusband** » Fri May 21, 2010 3:16 pm

Cool Ozark.

We all can't wait to hear the details.

My question would be now ... where do you go from there.

Do you have a plan? Doctors lined up? Was Buffalo worth it? (not that you have a CCSVI diagnosis) but the whole process ...

Donnchadh · Post by **Donnchadh** » Fri May 21, 2010 5:05 pm

This going to sound crazy, but I imagine that you are glad that you have CCSVI! After years of being mis-diagnosed, or told there's nothing that can be done, etc. its good to have the definitive answer.

Next step is to be liberated....hope you have someone who can do it for you.

Donnchadh

ozarkcanoer · Post by **ozarkcanoer** » Fri May 21, 2010 6:08 pm

mshusband,

Going to Buffalo and being tested at BNAC and meeting Dr Zivadinov and Dr Weinstock-Guttman were worth every penny and then some !!! My husband and I were treated very professionally. We went to Buffalo General Hospital where BNAC and JNI (Jacobs Neurological Institute) are located. It took me 3 days to do all the testing. I had a neuropsych exam (that was a hoot !!) on Tuesday. Wednesday I had the MRI/MRV at the hospital MRI facility on a 3 tesla machine in the morning. They let me wear my own clothes including my blue jeans with all the metal zippers and buttons ! I just had to remove my shoes and bra. In the afternoon I had the doppler ultrasound. They have one of the brand new ultrasound machines with Dr Zamboni's protocol. A representative of the company who manufactures the machine was there during my test !!! Thursday morning I had a consultation with Dr Weinstock-Guttman. She is a superb human being. All neurologists should be as caring to their patients as she is. Then my husband and I briefly met Dr Zivadinov. He assured us that his intention is to do the science with an unbiased mind. He is a scientist and wants the data... the evidence evidence evidence as Dr Zamboni so nicely put it !!!! I was very impressed with this. He must be taking a lot of heat from his peers because of his investigations into CCSVI. We must all support BNAC and Dr Zivadinov for pursuing this research.

Johnson · Post by **Johnson** » Fri May 21, 2010 6:17 pm

I am glad to read of your experience, and diagnosis, ozark. Good for you! (Do we get any pictures?)

ozarkcanoer · Post by **ozarkcanoer** » Fri May 21, 2010 6:39 pm

Interesting question, Johnson. We have the CDs but we haven't looked at them yet, except for the doppler ultrasound and I don't know how to interpret the images. I also have reports including one for the MRI/MRV, one for the quantitative iron, one for the doppler ultrasound and I will be sent a report from the neurological consultation.

The "BNAC Quantitative Iron MRI Report" is very interesting. There are charts showing how I fit in with all the controls and people with MS that they have tested and my brain is very high in iron, higher than the average for a person of my age !!! These picture are color and wouldn't show up very well on TIMS.

So to answer you question, we can see the "flap" that was reported left IJV. My husband is still going through all the images to see the stenosis in my right IJV. These are black and white and as soon as we can we will post them.

Rose2 · Post by **Rose2** » Fri May 21, 2010 7:47 pm

Ozark,
I am confused. I thought Albany was doing treatment also. Why did they not do any angio or stent or venography? I thought that was the point of their IRB, to test and treat?
Sounds like they got alot of good info for/from you but why send you home and not treat you and use that information?
Sorry if I missed something along the way.
Sincerely, Rose ;)

mshusband · Post by **mshusband** » Fri May 21, 2010 7:49 pm

She went to Buffalo ... not Albany Rose.

Albany still isn't up and running, but getting close from what I hear.

Rose2 · Post by **Rose2** » Fri May 21, 2010 7:52 pm

mshusband,
Ooooooooh...............thank you.
Never been to New York so they all sound alike. sorry.
What is Buffalo then? I know it is J Neuro, but they are taking patients for screeening and doing Intake but no follow up treatment?
How to they use their info if they don't treat that patient?
Thanks for your patience.
Rose ;)

CureIous · Post by **CureIous** » Fri May 21, 2010 10:24 pm

So very sorry to hear about your CCSVI condition. Oh wait, CONGRATULATIONS.

Any thoughts on a next step for treatment? How very exciting! Can you give us a brief synopsis at your convenience of the other tests you had prior to this? I seem to recall you had some other testing previously. I think we are all interested in those who "once were lost" and "now are found".... This is a key point to stress to those with negatives, that unless you have exhausted every angle, there's still a great possibility of false negatives.

Mark.