Buffalo CCSVI testing "On Hold"

Wichita · Post by **Wichita** » Fri Mar 05, 2010 2:02 pm

If you call BNAC at 716-859-7521, you will hear a recording:

"Effective March 4th, 2010, the CCSVI Venous Testing Program has been put on hold. Further information will follow."

That would explain why we did not get a call from them as expected this week, based on the recent email.

The message also says that the coordinator will be on vacation, so recommends calling back after March 15th using their toll free number 866-984-3564.

ozarkcanoer · Post by **ozarkcanoer** » Fri Mar 05, 2010 2:28 pm

Wichita, I called that number too and it seems to be true !!

ozarkcanoer

Zeureka · Post by **Zeureka** » Fri Mar 05, 2010 3:00 pm

Huh!

joanp · Post by **joanp** » Fri Mar 05, 2010 3:15 pm

i would think that is due only to overwhelming demand and they have to deal with the patients they currently have.

fogdweller · Post by **fogdweller** » Fri Mar 05, 2010 3:49 pm

joanp wrote:i would think that is due only to overwhelming demand and they have to deal with the patients they currently have.

But wouoldn't patient's already lined up also call in and get that message?

Seems more likely that staff is tied up or on vacation for a couple weeks and maybe they are using the time to get the new equipment running well. In thier annoucement they mentioned some new and specialized diagnositic equipment. There are always gliches.

Zeureka · Post by **Zeureka** » Fri Mar 05, 2010 3:50 pm

Sure has nothing to do with this Annals of Neurology Article of two problematic cases in Stanford after CCSVI intervention and therefore halting treatments in Stanford ? (reporting about 1 death due to "brain haemorrhage following the procedure in August and another required emergency open heart surgery in November after a jugular vein stent dislodged into the right ventricle of the heart.")

I know Zivadinov was stated with a quote in this article and people wondered why he quoted sthg there when himself interest in doing CCSVI testing.
A bit exaggertated...as if the same risk of stents would not also exist for cardiovascular interventions...which they do routinely already... I would like to know more about those two cases, as obviously the neurologist world wants to scare us off with it + may try to close our doors !!

I hope has nothing to do with that ! Otherwise...

AlmostClever · Post by **AlmostClever** » Fri Mar 05, 2010 4:58 pm

Also, wasn't it mentioned that they were addressing some legal issues and insurance? This could definately slow things down...

Opera · Post by **Opera** » Fri Mar 05, 2010 7:02 pm

Could this to be assocatied with internal politics or the anti CCSVI group applying pressure?
Does any one have an insight?

ozarkcanoer · Post by **ozarkcanoer** » Fri Mar 05, 2010 7:39 pm

It is my personal opinion that BNAC is overwhelmed by the responses to their CCSVI diagnostic program. I think we will find that this will all work out given time.

ozarkcanoer

Jason · Post by **Jason** » Sat Mar 06, 2010 6:31 am

This reminds me of when Tysabri was taken off the market for a year due to 2 deaths, now there are more cases of PML so will it be pulled off the market again? Probaly not, it is a drug and is proven to kill only a small amount of people, just like anything we do to stop our sufferring.

Post by **jimmylegs** » Sat Mar 06, 2010 6:52 am

both cases are/were TIMS members so you can inform yourself by searching.

drlaura · Post by **drlaura** » Sat Mar 06, 2010 9:02 am

I got a call from them earlier this week. They said I'll be getting another call in the next few weeks from the scheduling people to make arrangements. Will let you all know when.

Nick · Post by **Nick** » Sat Mar 06, 2010 9:24 am

Zeureka wrote: A bit exaggertated...as if the same risk of stents would not also exist for cardiovascular interventions...which they do routinely already...

Z

This is not necessarily so. This thread discusses issues relating to stents in veins. This is in addition to the recognised fact that veins widen in the direction of blood flow whilst arteries narrow in the direction of blood flow. A critical difference indeed and it is likely why the stent migrated from the vein to the ventrical (of the poor chap whose name I can't recall) in one of Dake's CCSVI patients.

Cheers
Nick

Zeureka · Post by **Zeureka** » Sat Mar 06, 2010 1:24 pm

OK thanks for clarifications. Sorry for my ignorance and little time to run through all the TIMS threads. I'm only here in w-ends (and stimes evenings after work).

So there can be a risk with stents in veins as with many things in life: guess we need to do a risk-benefit analysis and also hope that the interventionists that dear to use them understand which high risk areas should be avoided. But still the title of article had a targeted PR message...

cheerleader · Post by **cheerleader** » Sat Mar 06, 2010 2:04 pm

Once again...there is nothing regarding stents in any of this.
The information was posted so that people expecting to hear from BNAC this week would know about the situation. There is no PR bent to the initial post. We do not know what is going on there, and should NOT speculate. It could be scheduling, it could be staff problems, we simply do not know.

We do a disservice to the doctors (who are trying to help MS patients, I might add) by spreading rumor and innuendo on the internet. Find local doctors and work with them. No need to second guess someone else's doctor.
cheer

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Buffalo CCSVI testing "On Hold"

Buffalo CCSVI testing "On Hold"

CCSVI

Delay

I recieved a call this week