Dr Haacke's website is soliciting volunteers !!!!!!

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

Postby Shannon » Sat Nov 07, 2009 9:16 am

I lived in one of the Detroit suburbs! I am so happy for you! I signed up to volunteer, but I never heard back. When do you leave?
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Postby ozarkcanoer » Sat Nov 07, 2009 12:12 pm

Shannon... We are driving from St. Louis to Detroit on December 6 (a Sunday) and my imaging with Dr. Haacke will start at 10:00 AM on Monday morning December 7. It would be fun to find someone from Detroit on this website !!!!!
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Postby ozarkcanoer » Sat Nov 07, 2009 1:53 pm

Sorry guys, but I have to emotionally vent just a little. I am getting the imaging done by Dr. Haacke in Detroit. I am NOT AFRAID of the imaging procedure. But somewhere deep inside me I am afraid that HE WON'T DISCOVER ANY STENOSIS. I am afraid that my scans will all be NORMAL. I'm afraid that since Dr. Haacke doesn't do the Doppler Ultrasound that it will all be for nothing. Then all my doctors here in St. Louis will give me that "I knew this CCSVI was just trashy science" look in their eyes. Did anyone who has gone to Stanford ever feel this way ?????
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Postby layniesmom » Sat Nov 07, 2009 5:03 pm

Oh, Ozark...I think it is completely human to have those fears.
I am on a list to be called when they start testing here in Canada...two lists, in fact. One in Saskatoon, SK and the other in Edmonton, AB. It took a bit of phone tag. But after reaching those in charge of the study at those locations, the people that were lost when I called, had no more confusion when they called back. It's going to take a couple of months for the ethics committee to draw up some paperwork, but as soon as they do, my phone should be ringing and I'm on my way! (with the same fears inside as you described...what if...? what if they don't find anything wrong with me and my oh so skeptical and unwilling to take info from me, even the web address www.cvsi-ms.com/en to look for herself neurologist :evil: , looks back at me in disgust for even trying?) ugh...but we gotta march on with faith in our hearts, cause this makes so much sense and there's research to back it :)
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Postby ozarkcanoer » Wed Nov 11, 2009 2:08 pm

Today I met Mark P. Goldberg, Professor of Neurology and Neurobiology at the Washington University School of Medicine and Director of the Hope Center for Neurological Disorders. Their website is hopecenter.wustl.edu . I had a chance to present my case for CCSVI in front of about 10 people... Dr. Goldberg was very encouraging to me, he kept telling me to tell my story !!!!!! He DIDN'T just dismiss CCSVI but was VERY INTERESTED. He is a stroke expert also and appreciated the paper linking MS lesions to stroke damage. He has my CCSVI package, plus today I gave him cheerleader's note on the September cenaculum in Bologna. He has also met a researcher who is working on th the Buffalo study !!!!!!!!!!!!!

I am so excited I could burst !!!!!

Thank you everyone for helping me to have the courage to pursue CCSVI so diligently. I think I am making progress in St. Louis. When I get my images from Dr. Haacke's study (I am getting imaged Dec 7), I have all the resources of the medical school at my disposal to help me interpret the scans. I really don't know what I will get from Dr. Haacke, but the nurse coordinator said that I would get a copy of my scans.
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Postby Shannon » Wed Nov 11, 2009 4:30 pm

Oops...I didn't mean that I "lived" in one of the detroit suburbs, I meant to say I "live" there now! lol Best of luck ozarkcanoer! Great job spreading the news, too. I can't wait for my insurance to finally realize that this is real and pay for me to have the surgery. By then, I might even be able to be a little closer to home. :wink:
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Postby julu » Wed Nov 11, 2009 5:45 pm

So does anyone know if Dr. Haacke is still recruiting? I signed up immediately as a volunteer, but never heard anything.

And Ozark, way to go in spreading the word! I'm very interested in how things go with you in Dr. Haacke's study. I understand your "butterflies", I would certainly feel the same. I'll bet everyone who's gone to see Dr. Dake has been nervous that he wouldn't find anything... but we know how all those turned out!

Julie
RRMS diagnosed 8/09; Copaxone 9/09; Copaxone + estriol study at University of Minnesota 10/09<br />
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Postby ozarkcanoer » Wed Nov 11, 2009 5:58 pm

julu... A good MS buddy of mine wanted to sign up for Dr. Haacke's study just last week and she was told that they aren't taking any more people. I think his initial pilot study is small, just a proof of concept. But I think there will be a follow on study. It is my understanding that Dr. Haacke needs the pilot study so he can look for more funding.
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Postby MrSuccess » Wed Nov 11, 2009 8:44 pm

Nice work ozarkcanoer ! I like your approach with Professor Goldberg . No wonder he seems interested . Keep us updated . Nice catch :wink:



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Postby CureIous » Wed Nov 11, 2009 8:49 pm

ozarkcanoer wrote:Did anyone who has gone to Stanford ever feel this way ?????


Most if not all of us.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby ozarkcanoer » Thu Nov 12, 2009 2:04 pm

I had my 6 month neuro checkup today and asked him to send my MS diagnosis and treatment to Dr. Haacke in Detroit. No problem !!! He knows Zivadinov and Frohman and all the neurologists who have been associated with the CCSVI work, those at the Bologna cenaculum and those at Buffalo. But he was very cautious and did not support or refute CCSVI, but gave the expected response that there is much more research to be done. He sounded very much like the most recent NMSS pronouncement. But I am one more step on my way to Detroit !!!! I am getting my GFR next Monday and then all I have to do is wait. Then drive 9 hours to Detroit with my husband, get scanned, and come home !!!!!
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Postby bestadmom » Thu Nov 12, 2009 2:31 pm

Your neuro is at least open-minded and is looking into it. This is good news. Did you bake him a cake too?
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Postby ozarkcanoer » Thu Nov 12, 2009 2:42 pm

No... No cake for my neuro. Maybe that is why he was very cautious in speaking about CCSVI, LOLOLOL :roll: :roll: He has a busy busy practice and he is always travelling and conducting clinical trials, etc. etc. I asked him what he thought about the strong (i.e. 100%) correlation between CCSVI and MS and he responded with the usual "cause and effect" thing. I suspect he is just too busy to give it much thought... that was my impression. If you are interested in looking at my neuro's website go to :

http://mslivingwell.org
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Postby Ruthless67 » Thu Nov 12, 2009 3:04 pm

Makes you wonder how much he gets from Pharmaceutical companies, lol
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Postby ozarkcanoer » Thu Nov 12, 2009 4:48 pm

I want to make it very clear that I LIKE my neurologist !!!!! He isn't standing in my way to go to Detroit. I just think that (a) he hasn't had time to give CCSVI a lot of thought; and (b) because of that he is just giving the standard party line. Yes he performs a LOT of clinical trials, but I sincerely believe he has the best interest of his patients first and foremost. All of us on this forum (you have to admit) have given our hearts to CCSVI because it just makes a lot of sense. But in the end, many doctors and scientists will be very cautious about CCSVI until all the chips are in. I think my neuro gave me a very good answer. The research on the brain and immune system and immune modulating drugs will continue. Neurologists are making great strides. But WE have Zamboni and Zivadinov and Dake and a lot of people rooting for CCSVI, so I have no quarrel with the cautious response I got from my neuro. In fact I expected it !!!! Let's all fight the good fight !!!
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