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Posted: Mon Nov 02, 2009 2:56 pm
by beechwood297
I talked to Dr. Haacke today. He seems very interested in my case because I only have one jugular and it is so severely compressed. Also because I have no diagnosis. I am scheduled for scans next Tuesday the 10th.
For those who haven't seen my scans :
http://www.thisisms.com/ftopict-8515.html
Hopefully all goes well and the info from my case can help all others involved.
Joel
Posted: Mon Nov 02, 2009 3:50 pm
by ozarkcanoer
beechwood, I have seen your scans. Absolutely amazing. I am hoping that seeing Dr. Haacke will lead to something to help you !!!!
Posted: Tue Nov 03, 2009 7:10 am
by ozarkcanoer
Dr. Haacke's study coordinator, Paula Morton, called me at 6:00 A.M. this morning !!!! What a way to wake up, LOL. We got straightened out what documentation I will need from my PCP and neuro. Things are rolling... gonna see my PCP this Friday Nov 6 and my MS neuro next Thursday Nov 12 and get all the documentation I could possibly need. I Fedexed my latest MRIs to Paula last night.
PLUS, tomorrow (let's all sing "The sun'll come out tomorrow !!!!" I am finally having my meeting with Thomas A. Woolsey and other researchers at the Hope Center for Neurological Disorders here in St. Louis. I am going prepared to bend a lot of ears on CCSVI !!!!!!!! Tomorrow is going to be a long day.... I will let you all know what happens !!!!!
Posted: Tue Nov 03, 2009 7:27 am
by ozarkcanoer
OK IT'S GONNA HAPPEN !!!!!!
I got the following email from Paula Morton, Dr. Haacke's research coordinator just minutes ago :
"Assuming your GFR is normal I would like to book your scan for
Monday Dec. 7th @10 am EST"
Only one month away !!!!!!!!!!!!!!
Posted: Tue Nov 03, 2009 8:02 am
by Needled
OC, You are on a roll. I'll be hoping for clear weather, no storms allowed to mess up your plans, and great tests. We'll be waiting to hear how you do. Good luck with everything!
Posted: Wed Nov 04, 2009 6:08 am
by ozarkcanoer
bestadmom (and everyone else too), I emailed Dr. Haacke's research coordinator and asked her if I would get the results and the scans. She asked Dr. Haacke, and this morning I got a reply that I WOULD get the results. I am just worried that without the ultrasound the results will be negative. Dr. Haacke in his first email to me warned me that the imaging is not like what Dr. Zamboni did (which was Doppler ultrasound) and therefore the results MAY be inconclusive.
Posted: Wed Nov 25, 2009 10:29 am
by kbpwindsor
I have PPMS and live in Windsor Ontario- 10 minutes from Detroit. Can you please forward me he direct contact info as Iwould like to participate in the CSSVI study- anxiously!
thanks for your help
Posted: Wed Nov 25, 2009 10:38 am
by ozarkcanoer
kbpwindsor,
Here is Dr Haacke's MS-MRI website. Everything you need to know is right there. I am in a pilot study of just 10-20 people or so. I think that Dr Haacke wants to extend his study when he gets more funding. Maybe you could ask your local multiple sclerosis society to help fund Dr Haacke's research in Canada. I think sometime in the next few months there will be some sites in Canada (3 I think) that will be doing the imaging.
http://www.ms-mri.com/
Keep your hopes high !!!
ozark
Posted: Wed Nov 25, 2009 11:05 am
by dlb
I am soooo happy for you & so jealous. I have heard nothing from any of my communications to anywhere yet. Best wishes
Deb
Detroit
Posted: Wed Nov 25, 2009 11:44 am
by kbpwindsor
Thank you very much!
Posted: Wed Nov 25, 2009 7:45 pm
by topper
I am also from Windsor. I signed up online on Sunday morning. Checked back Monday at his website and the page had changed to the new message. Im seeing my neuro on Dec. 8th and hoping that he will order the mris recommended on the website. i will keep everyone posted.