Update on self-pay BNAC CCSVI testing
Haven't received my phone call
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?
Thanks.
Do any of you have a phone # that I can reach them at?
Thanks.
- ozarkcanoer
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rivies,
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.
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.
ozarkcanoer
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
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
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 priceline.com 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.
@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.
- ozarkcanoer
- Family Elder
- Posts: 1273
- Joined: Thu Oct 15, 2009 2:00 pm
- Location: St. Louis, Missouri
- Contact:
- ozarkcanoer
- Family Elder
- Posts: 1273
- Joined: Thu Oct 15, 2009 2:00 pm
- Location: St. Louis, Missouri
- Contact:
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 ?
ozarkcanoer
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 ?
ozarkcanoer
- ozarkcanoer
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- pegmegrund
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I'm going also - same dates as Ozarkcanoer. I'm excited and nervous at the same time.
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...
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...jr5646 wrote:I'll prob. stay at the Doubletree since it's right across the street. I think the room on priceline.com was $110
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...
- ozarkcanoer
- Family Elder
- Posts: 1273
- Joined: Thu Oct 15, 2009 2:00 pm
- Location: St. Louis, Missouri
- Contact:
- pegmegrund
- Family Elder
- Posts: 110
- Joined: Sat Oct 31, 2009 3:00 pm
- Contact:
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