This Is MS Multiple Sclerosis Knowledge & Support Community

I was referrered to dent neurolgical instite in ny by one of my vascular surgeon they will perform the doppler and mrv by mark hackes protocol for ccsvi 3980 Sheridan Drive, Amherst, NY 14226
200 Sterling Drive, Orchard Park, NY 14127
716-250-2000
716-250-2000
hope this is helpful for some of you!
Barbara

Interesting. There are two major MS centers in Buffalo, Dent and Jacobs, so Dent is their major competitor. I also heard Seton Imaging (a large MRI center in Buffalo) is also getting involved in testing.

Maybe thats how we can get neuros interested, get them competing for customers!

Everyone please remember though, testing is great and if the numbers hold up probably at least 90% of us will show obstructions. BUT, we really need to get the interventional radiologists involved in correcting the problem. I hate to be cynical but testing will just make money for these centers and not provide us with any relief! Also, most insurance plans limit how many MRI's they will pay for. If you do find someone to treat you they will probably want to do their own scan.

everything is helpful!!
keep us posted on how it goes for you please!!!!

Barbara,

Thanks so much for posting this info!!

4.5 hours from my home -- just doable for me because I don't travel well.

I'm working on getting the script now, and my fingers are crossed.

Thanks again!!

~HappyPoet

Thanks Barbra... I just got off the phone with them. The girl I spoke with never heard of an MRV so she had to check. Basically its an MRI...

First you'll need a script from your Dr. - whether it be your neuro. or a vascular specialist, I'm not sure. I won't be asking my neuro. because he completely tuned me out when I showed him the research...

Also do you know if we need just a regular doppler or the transcranial?

Thanks so much for posting this.. I have an appt. with a local interventional radiologist next week so who knows, maybe I can convince him to write me the scripts. I was worried about having any scans read by those not trained, or even aware of the protocals - which could end up being a complete waste of my time. I'd feel much more comfortable having testing done at Dent, even if it is 4.5 hours away.

I can't wait any longer for Stanford... Having said that, I'm not sure I'd let anybody other than Dr. Dake stent me. So maybe if I have blockage, hopefully I can get angio. in the mean time.

Things shouldn't be this difficult... Then again, nobody but me is looking out for me but me. We just have to make things happen.

jr5646 wrote:Thanks Barbra... I just got off the phone with them. The girl I spoke with never heard of an MRV so she had to check. Basically its an MRI...

First you'll need a script from your Dr. - whether it be your neuro. or a vascular specialist, I'm not sure. I won't be asking my neuro. because he completely tuned me out when I showed him the research...

Also do you know if we need just a regular doppler or the transcranial?

Thanks so much for posting this.. I have an appt. with a local interventional radiologist next week so who knows, maybe I can convince him to write me the scripts. I was worried about having any scans read by those not trained, or even aware of the protocals - which could end up being a complete waste of my time. I'd feel much more comfortable having testing done at Dent, even if it is 4.5 hours away.

I can't wait any longer for Stanford... Having said that, I'm not sure I'd let anybody other than Dr. Dake stent me. So maybe if I have blockage, hopefully I can get angio. in the mean time.

Things shouldn't be this difficult... Then again, nobody but me is looking out for me but me. We just have to make things happen.

You should make sure you have all the info with you you can about the protocol to give to the IR you are seeing next week. He/she should be able to arrange the same tests for you, and perhaps agree to correct the problem.

jay123 wrote:You should make sure you have all the info with you you can about the protocol to give to the IR you are seeing next week. He/she should be able to arrange the same tests for you, and perhaps agree to correct the problem.

Thanks Jay... yeah, I have it all... I'll see how the appt. goes and if he's clueless I'll ask to go to Dent.. otherwise, maybe i can stay local.. if he looks at me like I have a third eye, I have a couple others I can got to, but not as close..

I just need some relief from this crap... I'm sick of it... anything would be welcomed at this point...

jAK7HAM9
thanks for posting this info.
I'm in nyc--Amtrak goes to Buffalo. Please let us know how it goes--then might consider it.

I just spoke to Dent. I go the Doppler tech on the phone. She was very nice and told me that she had read about the Buffalo study in the paper. However, she said that they are not involved in testing MS patients, and she is in no way familiar with Dr. Haacke's protocol.

They were not able to get the MRI dept on the phone at this time. But I'm not hauling up there and not getting it all done at one place.

And I was willing to travel 7 hours to get there! Back to the drawing board.

Lucky - it wouldn't be worth it anyways just to be tested. Start writing letters to interventional radiologists in your area, especially at the many medical schools near you (John Hopkins???).
It does work, you will find someone to both look at and treat you if you keep trying.