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Haven't received my phone call

Posted: Mon May 10, 2010 10:42 am
by rivies
Hi- I see that many of you have now received your phone call to schedule for Buffalo. I have not received my phone call yet and have been signed up since February and received a call back then and now have been waiting.
Do any of you have a phone # that I can reach them at?

Posted: Mon May 10, 2010 11:42 am
by ozarkcanoer

I think that BNAC is just "gearing up" for the testing program. If things are in a bit of a state of confusion it is because they are a research lab and not a hospital or clinic. If you have signed up then I presume eventually they will call you. I know of 3 people who have been called. But I will contact them and let them know your concerns.


Posted: Mon May 10, 2010 9:21 pm
by jr5646
I got "the" call today from Christina...

I'm going for it too.. and faxed in the consent form this aftermoon..

I initially tossed and turned about the decision (prior to getting the call). Is it worth the $? Will the $ go toward further testing? What if they don't find any blockages? While awaiting other IRB approvals, will having the testing done help? Should I withold the BNAC testing info. until after getting into another clinical trial to compare results? I guess at least "if" ccsvi is found, I'll be alot less anxious while waiting for IRB approvals and ultimately (hopefully) treatment..

Too damn much thinking for the old MS brain to handle..

Then it all came full circle... What else do I have to do??? At least I can say my info. is going toward a good cause.. I;ve got very little more than that to offer, so what the hell. Not only that, but I've easily spent over $4500 or more on beer and cigarettes in my lifetime.. hahaha

My other ulterior motive = if positive results are found - I'm going to give copies to my assho;e neuro. and perhaps the two other vascular dr.s I "bothered" - who btw, looked at me as though I had a third eye.. LOL

See ya in Buffalo, ozarkcanoer... Hey, at least it's not winter :)

Posted: Tue May 11, 2010 6:54 am
by jr5646
I have my dates... May 24th and 25th.. I'll prob. stay at the Doubletree since it's right across the street. I think the room on was $110 - too bad I'm not in the best condition to sightsee..

@rivies> check your pm

I'm guessing here, but to be fair, I bet they prob. follow a call list based on when you submitted the online request... Not everybody is going to do the testing.. so who knows, maybe they can squeeze you in..

Looks like to me they are scheduling two weeks out... as my appt. is exactly two weeks from receiving the call.

Posted: Tue May 11, 2010 8:41 am
by ozarkcanoer

I wish I could meet you in Buffalo but my dates are May 18, 19 and 20 !! The great thing about our participation ins that our results will be used for an open label study !!! Let's all share our experiences at BNAC here !


Posted: Tue May 11, 2010 9:28 am
by bestadmom
The Doubletree has/had a discounted rate for hospital visitors. OC and JR, you MUST est the wings at Anchor Bar, a 3 block walk from the hotel.

Posted: Tue May 11, 2010 10:23 am
by ozarkcanoer
Hi bestadmom !!!

We have reservations at the Hampton Inn Suites. We also got a discounted rate there of $50.00 off for visitors to BNAC. It looks like it is about one mile away from the hospital complex. I am looking forward to meeting the team at BNAC and bringing home my doppler/MRI/MRV results. My major anxiety is that I won't have any signs of CCSVI :( . Then what will I do ??

Bestadmom, are you getting any more help for your vein problems from Dr S ? Or is all that on hold ?


Posted: Tue May 11, 2010 10:31 am
by bestadmom
Hi OC,

Everything is on hold until Dr. Sclafani gets is IRB approval. If I could cross my fingers, I would.


Posted: Tue May 11, 2010 10:41 am
by ozarkcanoer

I love Dr Sclafani even though I've never met him. His thread here on TIMS is a wonderful discussion with an expert. He seems so dedicated and willing to listen to and communicate with us. Thank you in every which way for finding him !!!


Posted: Tue May 11, 2010 10:42 am
by bestadmom
I love him and he knows it. He is the best.

Posted: Tue May 11, 2010 10:43 am
by rivies
Thanks for the info JR5646! I actually do not want my appointment until later in July, as I will be in upstate NY at that time (5 hours away). I live in Oregon, so hopefully it will work out perfectly.

Posted: Tue May 11, 2010 11:14 am
by wobbly
any 1 coming 2 town p m me i could be avail 4 a beer / softball nite is wed i always need help guarding yhe beer cooler ---- PEACE :roll: :roll:

Posted: Wed May 12, 2010 2:45 pm
by pegmegrund
I'm going also - same dates as Ozarkcanoer. I'm excited and nervous at the same time.
jr5646 wrote:I'll prob. stay at the Doubletree since it's right across the street. I think the room on was $110
jr5646 - as bestadmom said above, there is a special rate. Call the Doubletree reservations number and ask for the 'Buffalo General' rate - it should be $91/night. I didn't get anywhere asking for a BNAC or JNI rate...

When I spoke with Christina it sounds like the challenge is scheduling all of the tests - including the appt. with the neuro, so it may take some time to work through all of the people on the list. Last I heard there were several hundred...

Posted: Wed May 12, 2010 6:39 pm
by ozarkcanoer
Hi Pam !!

Are you excited ? I'm going to start packing tomorrow, LOL. We are driving to Buffalo so we leave early Sunday morning. And just coincidentally I see mu neuro this coming Friday !! I can't wait to meet you.


Posted: Fri May 14, 2010 4:57 am
by pegmegrund
Two days until we leave for Buffalo... Yes, OC, very excited, but also nervous... What if they find something? What if they don't find anything? Looking forward to meeting the BNAC team, and you!