Trying to drum up CCSVI testing interest in St. Louis, MO

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

Trying to drum up CCSVI testing interest in St. Louis, MO

Postby SaintLouis » Mon Dec 28, 2009 12:18 pm

Well, I've spent the morning printing out Zamboni info and addressing letters to some key target doctors in the area, hoping someone at least calls me to tell me who they know that might be interested in starting to test for and treat CCSVI, even if they're not. Fingers crossed.

I also spoke with a vascular lab and this is a conversation I thought was interesting/confusing. The technician told me they no longer have the color doppler equipment to do a transcranial exam as that is old technology. She said that old technology does not actually show the veins, just wavelengths. (Which I believe is what makes it most important for picking up reflux in CCSVI...??) For transcranial exam of the veins in question she said they would recommend a CT scan to pick up any problems.

Hmm. Nobody said this was going to be easy, right?
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Postby LR1234 » Mon Dec 28, 2009 12:31 pm

mmmmm I have had a CT scan and a doppler.
My understanding was that an MRV and CT are better for finding occlusions and stenosis and they are not great for looking at blood flow.
The doppler is the one for the blood flow and reflux.
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Postby ozarkcanoer » Mon Dec 28, 2009 12:43 pm

Hi SaintLouis,

I'm in St Louis and I contacted my own neurologist and I contacted the Hope Center for Neurological Disdorders at the Washington University Medical School. I also contacted a neuroradiologist at Barnes who is also a professor of medicine at the medical school. I contacted all these people in October and November 2009. There is some interest in CCSVI among all these doctors and researchers, but they are taking a wait and see more evidence attitude. My own neurologist offered to order an MRV for me last week. I decided just last night to take him up on his offer but when I tried to call his office I found out that he is on vacation until January !!

There is a neurologist at St Louis University, Dr Stephen Brenner, who seems favorable toward the CSVI hypothesis so you might give him a call. If you find out anything, please let me know !! You can either post here or PM me.

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Postby SaintLouis » Mon Dec 28, 2009 4:05 pm

LR1234: Do you know exactly what kind of doppler you had done? Transcranial or extracranial or both and did they call it a color doppler?

ozarkcanoer: I will absolutely let you know if I get a nibble from anywhere local. I'm anxious to see if your MRV shows anything, maybe I should just get an MRV, but I'm afraid it either won't show the problem as a doppler would or it won't be read by someone who knows what to look for in CCSVI.
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Postby ozarkcanoer » Mon Dec 28, 2009 4:32 pm

SaintLouis,

Your concerns are exactly my concerns ! I am also enrolled in Dr Haacke's Detroit MS-MRI study. Even if I get an MRV in St Louis I am going to Detroit when they notify me of my new date (I was supposed to go to Detroit for scanning Dec 7 but was postponed because of MRI software issues and IRB issues). That way I'll have double the diagnostics !! Except no doppler ultrasound :( . Oh, well, time will tell.....

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