Going to Motown, counting down the days !!!

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

Going to Motown, counting down the days !!!

Postby ozarkcanoer » Mon Nov 16, 2009 8:40 am

It's exactly 3 weeks until my husband and I drive from St. Louis to Detroit (about 9 hours) so I can be scanned by Dr. Haacke with his protocol. This morning I had the required GFR blood test to make sure my kidneys are OK. I think Paula Morton RN, Dr. Haacke's research coordinator should have all my information this week. So now all I have to do is wait. I know this isn't as exciting as getting the procedure, but I am excited to be involved nevertheless. My ultimate goal is for MS researchers and doctors (including interventional radiologists) in St. Louis at the Washington University School of Medicine jump on board so that I can have the doppler tests here and if I have stenosis then I can have the Liberation Procedure, whatever that may be !!!!! And I hope that we can have a center here for all my friends in this part of the country to be tested and liberated. I have a sister-in-law with RRMS and she is on Tysabri. My husband's cousin shut down his dental buisiness because of his MS. He walks with a cane. I want to make a difference !!
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Postby Ruthless67 » Mon Nov 16, 2009 9:23 am

ozarkcanoer,

You are a pioneer, I'm happy for you! :D

Lora
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Postby ozarkcanoer » Wed Nov 18, 2009 11:27 am

I'm all set to go to Detroit, just have to wait, LOL. Got this reply today from Dr. Haacke's research coordinator :

-----------------------------------

Good Morning
I have received your GFR from your physician.
See you on Monday Dec. 7th @10am
Our address is 3990 John R
Detroit, MI 48201
Mapquest.com is a good source for directions to come here if you don't
have a GPS or mapping available from your auto club.
When you arrive at Harper Hospital you can selfpark for $2.50 or valet
for a couple dollars more.
When you enter the hospital go to the front desk for a pass.
Tell them you are for a RESEARCH MRI. DO NOT go to patient registration
come directly to MRI.
For your exam, wear loose comfortable clothing without metal fasteners,
no make-up or jewelry.

Have a Happy Thanksgiving
Looking forward to meeting you

Regards
Paula
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Postby CRHInv » Wed Nov 18, 2009 5:17 pm

Way to go OC! This is so important!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby turbotaguy » Sun Nov 22, 2009 4:40 am

Can you give me details of what the folks in Detroit are doing? I live in the area and have not heard. I'd like to sign up!
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Postby ozarkcanoer » Sun Nov 22, 2009 6:05 am

turbataguy,

Here is Dr Haacke's website for his MS MRI study. There is a "contact us" button there. I enrolled in this study about 3 weeks ago. His initial study only includes a small number of people. Maybe 10 to 20. Someone else tried to sign up and was told the study was no longer recruiting. But don't despair. Dr Haacke wants/needs to get more funding so he can create a larger study.


http://www.ms-mri.com
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Postby ozarkcanoer » Sun Nov 22, 2009 8:19 am

:D Now it's only two weeks from tomorrow, Dec 7, for my imaging in Detroit !!! It's all I can think about. :D

Everybody pray that there is no ice storms or heavy snow between St Louis and Detroit from Dec 5-8 !!!!
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Postby turbotaguy » Sun Nov 22, 2009 8:43 am

Thank you for the info. Good luck in December!
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Postby Loobie » Sun Nov 22, 2009 9:22 am

I'll be up there the following week so he can see what it looks like post procedure.
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Postby ozarkcanoer » Mon Nov 23, 2009 11:55 am

Golly, Dr Haacke is being inundated by people who want to participate in his MS-MRI research. I feel incredibly lucky to have been chosen, even if it is all still experimental. If my scans don't show any stenosis, then I will come home and continue the fight in St Louis to get someone trained to do the doppler ultrasound. If I do have stenosis then I will take the scans to an interventional radiologist here in St Louis, and hope I can find someone receptive to The Liberation Treatment. I have many contacts here so I should be able to find someone.

My husband and I plan to make a donation to MS-MRI.
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Postby ozarkcanoer » Mon Nov 23, 2009 11:56 am

Oh, I forgot, I will be in Detroit in exactly 2 weeks for my scans !!!!! Dec 7.
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Postby ozarkcanoer » Mon Nov 23, 2009 3:15 pm

Just today I got an appointment with a neuroradiologist to discuss CCSVI and the results of my scans from Detroit !!! My PCP referred me and I went through about 3 doctors before I found my guy. He is with BJC hospitals in St Louis. Was nominated as a "best doctor" in 2008. I will get my scan from the Haacke study in Detroit on December 7. Then we drive home and I have an appointment with this new doctor at 8:00 AM December 9. My head is spinning (well my head always spins, LOL).
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Postby Ruthless67 » Mon Nov 23, 2009 3:53 pm

I'm so excited for you ozarkcanoer, just like Joan (Cheer) you're really making things happen!!
Lora
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Postby ozarkcanoer » Mon Nov 23, 2009 4:25 pm

Here is some more information about my radiologist. I don't want to post his name quite yet since I haven't actually seen him (nothing like counting your chickens before the eggs hatch, LOL).


Current Position
Professor, Radiology
Division of Diagnostic Radiology
Neuroradiology Section
Professor, Neurological Surgery

Specialty Areas
Neuroradiology
Interventional Neuroradiology
Radiology
Neurovascular Disorders
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Postby CRHInv » Mon Nov 23, 2009 5:01 pm

OC my fingers are crossed for you. Heres to stenosis, with no ice and no snow. I hope you can get something going with your new radiologist.
Hang in there,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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