Response from Neuro

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby peekaboo » Fri Jun 19, 2009 11:15 am

Super duper good news...i also let Dr Dake know...
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Postby daniel » Fri Jun 19, 2009 11:33 am

bestadmom wrote:I just spoke with the research department at Jocobs Buffalo Neurologial Institute in NY and they are doing a 1000 person study of MS patients for CCSVI. It is not interventional but there is no charge to participate and get the needed tests.

...snip...



Is there any chance of them letting a Canadian sneak into the test? Where could I find contact information regarding this...? Can I just call up the Buffalo Neurological Institute and ask about it or do I need to call a dept directly or....?
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Postby bestadmom » Fri Jun 19, 2009 11:34 am

I think it's very exciting. It's also a $123 round trip plane ride from NYC to Buffalo, which is probably less expensive than driving. Hopefully they are willing to share the results with us and/or Dr. Dake otherwise it's pointless.
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Postby peekaboo » Fri Jun 19, 2009 11:46 am

I just got and email back from Dr D.

He wrote:
Thanks, Holly, this is great news. I know the head of the Institute there, Nick Hopkins, a neurosurgeon. I will call him and find out what they are doing, finding and thinking---and let you know just as soon as I have anything to report. I hope that as the temperature rises, that you will notice some improvement in heat tolerance compared to similar conditions previously. Keep communicating and enjoy the weekend.




Cool Beans :wink:
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Postby bestadmom » Fri Jun 19, 2009 11:48 am

HI,

You copied my post! Can you pls repost what you got from Dr. Dake?

Michelle
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Postby peekaboo » Fri Jun 19, 2009 11:52 am

sorry michele i caught it while you were posting my boo boo :oops: :roll:
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Postby Sharon » Fri Jun 19, 2009 11:53 am

This is such great news - a study in the United States for CCSVI.

Sharon
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Postby Crabby » Fri Jun 19, 2009 11:56 am

bestadmom wrote:I just spoke with the research department at Jocobs Buffalo Neurologial Institute in NY and they are doing a 1000 person study of MS patients for CCSVI. It is not interventional but there is no charge to participate and get the needed tests. They have 250 people enrolled so far and need to get back to me in a few days to talk about how it works, scheduling, etc. They are actively recruiting.


Did they tell you what diagnostic tests they're going to use? Since they have fancy MRI equipment, hopefully they'll do MRVs instead of or in addition to dopplers.
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Postby bestadmom » Fri Jun 19, 2009 12:01 pm

They said are doing a doppler but the perosn I spoke with isn't involved in the study and the 3 women who are administering it weren't available. They should call me by next Tuesday. If you've got questions, post them here and I'll compile a list and ask away.
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Postby peekaboo » Fri Jun 19, 2009 12:05 pm

With the Dopplers make sure they get the high neck area as well...I believe that the upper jugs have been missed from others not knowing where to look. And here we have Cheers husband and Marie both had the upper jug stenosis...
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Postby mrhodes40 » Fri Jun 19, 2009 12:07 pm

Jacobs is associated with Dr Zamboni. The 4 Americans they tested in the Liberation 100 are being followed there and every time Zamboni comes to the US to check on his 4 American patients he goes to Jacobs and deals with the people there.

They actually have been trained by Zamboni to do the dopplers the way he does them. Unlike other places we TIMS ers have been trying to see, they have additional techniques and training so that when they look at them, they see them as Zamboni does and are capable of noticing what is needed to "recognize" the signature of an MS stenosis.

1000 poeple...............ONE THOUSAND! To me this says this is a go. These guys because of their association with Dr Z know already this is going to work and that is why they are not dinking about with some doeky 20 person thing that ends up saying "more patients are needed to prove this". Do you think they'd waste resources on a 1000 person evaluation if they thought it might not work? I say "no way". That is some serious investment.

Who wants to bet a doppler company is funding the study?

am I all wet and reading more into it than should be?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby peekaboo » Fri Jun 19, 2009 12:31 pm

marie wrote:


Do you think they'd waste resources on a 1000 person evaluation if they thought it might not work? I say "no way". That is some serious investment.


They are serious for sure :!: :D
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Postby Sharon » Fri Jun 19, 2009 12:43 pm

No Marie you are not.

I just called Jacobs Institute because I wanted to know how they are recruiting. They are basically replicating Zamboni - there will be a healthy control group, a group with other neurological disease, and those with CD MS. They are also interested in the familial connection ( actually the reason I called), My brother has MS, I have MS and have been treated for CCSVI, I have two daughters who would like to be tested. I was going to ask Dake, but there is a concern with future insurance coverage issues. This study would be perfect because my daughters would be blinded with a study ID code.

Dr. Bianca Guttman is involved with the study. The study requires a 2-time visit - one for MRI/MRV and one for the Ultrasound. They are recruiting locally in the area, but will accept anyone. They can only do the MRI/MRV scanning on Tues, Thur, Sat - a 2-hour scanning. We talked about the scheduling issue (coming from Colorado) and she thought maybe something could be worked out for a 1-time visit for those travelling distances. They have been recruiting for about 2 months.

There is no out of pocket expense - just your own travel.

I'm psyched!! This is almost too good to be true.

Sharon
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Postby bestadmom » Fri Jun 19, 2009 12:43 pm

Marie,

I love your logic!

They just called me and set it up for Sept. 15th. Only does the MRV's on Tues and Thurs.

They do the doppler and mrv, they do not give results but will give a disk of the mrv that I can send to DR. Dake, whose ears must be burning - he left me a message while I was on the phone w/Jacobs setting it all up. They need blood tests up to 2 mos in advance - a bun, creatinine, egfr. I can get it done in my local hospital and have results faxed. They doi the MRV w/contrast.

Get there at 3:30 pm , head and neck doppler 3:30-4:30, questionnaire – 4:30-6, mri/mrv for 2 hours starting at 6:30, Buffalo general hospital, 2nd fl., Jacobs Neurological. All paid for 100% by them.
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Postby cheerleader » Fri Jun 19, 2009 12:44 pm

WHOOOOOOHOOOOOOO!!!
Like Marie said, Jacobs worked with Zamboni, so they understand how to utilize the dopplers. I'm not as concerned about misdiagnosis, since it will be Dr. Z's protocol.

This is a GOOD DAY!!!

Thanks bestadmom and everyone, for calling and being squeaky wheels, and keeping this on the front burner.
xoxox,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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