Update on self-pay BNAC CCSVI testing

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Update on self-pay BNAC CCSVI testing

Postby pegmegrund » Thu Apr 29, 2010 11:34 am

Did you sign up for the BNAC CCSVI self-pay testing program that was posted on their website back in Feb 2010? (Note that the program is not currently available on their website. I think they removed it while they were sorting out the legal issues.)

If you did sign up previously, you may be receiving a call soon. They have sorted out the legal issues, and are calling folks who have already signed up and are emailing out the legal agreement.

I am disappointed to learn from the BNAC staff that this self-pay testing program only includes a written report. I had hoped to get a CD of images to bring back to a local IR.

*** edit ***
As Ozarkcanoer mentions below, BNAC has just clarified that we will be able to get a CD of images from the tests. I still think it wise to ask about this if you get the call... and to indicate how important this is...
*** end edit ***

If you get a phone call about this, please clarify before you sign up and pay as to what you are getting or not getting for the money.

I have expressed my disappointment and will likely not paticipate. I wanted to share this information with others so that we're all informed. I think many of us expected to be able to come home with CDs to pursue treatment...
Last edited by pegmegrund on Thu Apr 29, 2010 1:10 pm, edited 1 time in total.
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Postby DizzyLiz » Thu Apr 29, 2010 11:55 am

I too am disappointed too!! - IN THIS DAY AND AGE, we patients should be holding our own COMPLETE medical records and should be able to have COMPLETE copies of the results of all tests done on us.

I am disappointed to learn from you that this self-pay testing program only includes a written report. I had aalso hoped to get a CD of images to bring back to a local or not so local IR.

If I get a phone call about this, I WILL clarify before I sign up and pay as to what I will be getting or not getting and WHAT I WANT for MY money.

I too will express my disappointment and ?.
I'm glad you shared this information with us so that we're all informed. I think many of us SHOULD expect to come home with CDs to pursue treatment...
DL
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Postby ozarkcanoer » Thu Apr 29, 2010 12:13 pm

Hi all... I got a phone call from BNAC this morning also. I received as an email a legal "Consent" document that I have to sign that says :

"Any information you gain from these Tests (sic) is purely informational and educational and will not be able to be used by you or any other person to diagnose, cure, treat, mitigate, or prevent your MS."

I was also told that I would NOT get any CD with the results of my MRI. This is a lot of CYA ("cover your a**) legalese. So I probably will NOT participate in the testing after all the financial and emotional trust I put in BNAC and this testing program. Now I am at a loss as to what to do. I called my local neuroradiologist, who encouraged me to do the BNAC testing, and his nurse told me that without a CD of the MRI there is nothing that my neuroradiologist can do for me. :cry: :cry:
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Postby ozarkcanoer » Thu Apr 29, 2010 12:29 pm

I just got a phone call from BNAC that you WILL get a CD of the MRI and any images from the doppler ultrasound. The following is the text of the email from Administrative/Project Coordinator of the BNAC testing program :

"I just spoke with the director of the study and you will be receiving the CD images along with the reports and also the images of the doppler if you would like.
Thanks,"

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Postby eric593 » Thu Apr 29, 2010 12:48 pm

You guys ROCK! Now THAT is what I call good patient advocacy, not just saying "yes" to get in whatever study is close to home, but to speak out when it doesn't provide you with what YOU need yourself.

You guys are awesome! Way to go insisting that if they want you involved, that you too get the benefits of testing and to be able to take what you need to carry on.

:D
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Postby pegmegrund » Thu Apr 29, 2010 1:07 pm

I received a call as well. Phew! It will be great to have CDs with images to work from if the testing is positive... I'll also update my original post above.
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Postby ozarkcanoer » Thu Apr 29, 2010 2:16 pm

pegmegrund and everybody,

When you look at the consent form, notice that it refers to a "CCSVI informational form". I didn't receive any informational form. I called BNAC (again) and told them about this. I don't want to sign a document that says I have read something I haven't even received !!! read this consent form carefully !!!

I hope to receive this "CCSVI informational form" soon so I can sign off on this and get the thing scheduled.

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Postby pegmegrund » Thu Apr 29, 2010 2:43 pm

Hey OC,

Great minds think alike... I also noticed that... and emailed asking about it. Read the fine print, ask questions, don't assume anything...
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Postby newfie-girl » Thu Apr 29, 2010 3:43 pm

I missed my call, but Christina , from BNAC left a message and i returned her call but haven't heard back yet. At first I was somewhat confused as to what she was referring to, as I had signed up for so many different clinics/trials, but was glade to see the thread here, regarding this, i knew you guys would be on top of it. So if we go ahead with the testing and get a CD showing stenoses, will that be sufficient to take to an IR for treatment, or will he also require doing his own. Would someone be kind enough to shed a little light on how all this will affect us getting liberated elsewhere. It seems like ALOT OF MONEY for just the testing. Do you think there might be a chance that they will offer treatment? :roll: I really don't know what to do, as I am so confused with CCSVI overload, but i am SPMS and really can't afford to wait.
Any advice would be appreciated from you guys.............TKS :)
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Postby ozarkcanoer » Thu Apr 29, 2010 4:30 pm

newfie,

There are a lot of unknowns and all your questions are good ones ! I have a neuroradiologist all lined up to help me interpret my MRI and MRV when I bring them back from Buffalo. Even if stenosis is found I don't know if he or any doctor here will agree to treat me since the procedure is so controversial. And it is a lot of money. You need to consider carefully all your options. For me the money I am spending at BNAC is for all the vacations I haven't gone on for 3 1/2 years due to fatigue and pain. I also am helping the research to unravel the CCSVI/MS knot. Maybe this will just be another false lead, maybe not. But it is something I can do. I attended a presentation by my own neurologist on Tuesday mainly about all the new drugs that are in the pipeline and I was underwhelmed to say the least. None of these drugs address my symptoms so how can I get excited ? It is a hard decision, but you have to do what you have to do.

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Postby newfie-girl » Thu Apr 29, 2010 4:52 pm

OZ.....Thanks for your input on my total state of confusion. :? :? :wink: So I take it that you are goin to Buffalo for the testing .....good luck with that, and perhaps if I can get my head around to making a decision i too will be heading to Buffalo, right now it's the only offer available to me, and I guess its time for me to jump on board and go for it, and hope for the liberation procedure somewhere down the road if necessary. Do BNAC do the doppler only, or do they also follow up with venogram?
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Postby ozarkcanoer » Thu Apr 29, 2010 4:56 pm

Newfie and everyone,

To my knowledge, this is what you will receive at BNAC :

To specify, you will receive:

MRV of the neck report and CD
MRI of the brain report and CD
Dopper report and CD
Clinical report only
No NP report
No genetic results

NP means neuropsychological exam. They will draw a small amount of blood for a genetic test but you will not get the results. Genetics is a very complicated thing but you are contributing to science !!

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Postby mangio » Thu Apr 29, 2010 4:59 pm

Direct-Ms CCSVI event tomorrow evening. I hope we get the chance
to ask questions. Of course this all depends if the planes can land,
unbelievable snow storm hit the city yesterday - yikes!
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Postby ozarkcanoer » Thu Apr 29, 2010 5:03 pm

Oh, and one other thing : CCSVI is still in study mode. The science will have to be proven by clinical trials and studies. We should all keep that in mind so we are not too disappointed if our expectations are not met. That is why so many doctors are so cautious and noncommittal. Please stay optimistic but understand that things are very crazy right now. I am going to BNAC but I really don't blame any patient who wants to wait and see. But if you can participate and pay the fee and it is what you want to do, then go for it !!!

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Postby ozarkcanoer » Fri Apr 30, 2010 8:52 am

Well, I have a BNAC date !! (unless they change it again, LOL). May 18, 19 and 20. It's not a liberation procedure but CCSVI testing from the best.

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