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

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

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

Postby ozarkcanoer » Fri May 21, 2010 2:33 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
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Advertisement

Postby thisisalex » Fri May 21, 2010 2:41 pm

congratulations on your malformed veins mate :)
User avatar
thisisalex
Family Elder
 
Posts: 218
Joined: Wed Dec 02, 2009 4:00 pm
Location: Hungary

Postby prairiegirl » Fri May 21, 2010 3:26 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!
User avatar
prairiegirl
Family Elder
 
Posts: 228
Joined: Fri Feb 05, 2010 4:00 pm

Postby shye » Fri May 21, 2010 3:36 pm

happy for you Ozark :D
waiting to hear the details...
User avatar
shye
Family Elder
 
Posts: 763
Joined: Sun Nov 29, 2009 4:00 pm
Location: NYC

Postby Rose2 » Fri May 21, 2010 3:41 pm

Sounds like you had a wonderful trip!! Hope to follow your adventures and can't wait for your update! Go rest!!
Rose ;)
User avatar
Rose2
Family Elder
 
Posts: 274
Joined: Sat Sep 12, 2009 3:00 pm
Location: SF area

Postby Zeureka » Fri May 21, 2010 4:08 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 !!!
User avatar
Zeureka
Family Elder
 
Posts: 481
Joined: Thu Jan 14, 2010 4:00 pm
Location: Italy

Postby mshusband » Fri May 21, 2010 4:16 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 ...
User avatar
mshusband
Family Elder
 
Posts: 249
Joined: Sun Jan 24, 2010 4:00 pm
Location: Pittsburgh, PA, USA

Postby Donnchadh » Fri May 21, 2010 6:05 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
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
User avatar
Donnchadh
Family Elder
 
Posts: 512
Joined: Sat Jan 23, 2010 4:00 pm

Postby ozarkcanoer » Fri May 21, 2010 7:08 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.
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby Johnson » Fri May 21, 2010 7:17 pm

I am glad to read of your experience, and diagnosis, ozark. Good for you! (Do we get any pictures?)
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby ozarkcanoer » Fri May 21, 2010 7:39 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.
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby Rose2 » Fri May 21, 2010 8:47 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 ;)
User avatar
Rose2
Family Elder
 
Posts: 274
Joined: Sat Sep 12, 2009 3:00 pm
Location: SF area

Postby mshusband » Fri May 21, 2010 8:49 pm

She went to Buffalo ... not Albany Rose.

Albany still isn't up and running, but getting close from what I hear.
User avatar
mshusband
Family Elder
 
Posts: 249
Joined: Sun Jan 24, 2010 4:00 pm
Location: Pittsburgh, PA, USA

Postby Rose2 » Fri May 21, 2010 8:52 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 ;)
User avatar
Rose2
Family Elder
 
Posts: 274
Joined: Sat Sep 12, 2009 3:00 pm
Location: SF area

Postby CureIous » Fri May 21, 2010 11:24 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.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1189
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: Flashover81