To those without insurance/who can't afford this

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

Postby chrishasms » Wed Oct 07, 2009 9:20 pm

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Last edited by chrishasms on Sat Dec 05, 2009 5:49 pm, edited 1 time in total.
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Postby Sharon » Thu Oct 08, 2009 7:33 am

ikulo -

I am in Denver. I am not being treated by the Rocky Mtn MS Center - my neurologist is Dr. Allen Bowling who split from the Center about two years ago. I will send you a PM about my effort to get the information over to Corboy and Vollmer -

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Postby Sharon » Thu Oct 08, 2009 7:36 am

Hey Chris - care to join me on October 20th at the Arvada Library - Timothy Vollmer is having one of his MS information meetings. I'm hoping to be able to get a question or two to him or at least speak to him privately.
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Postby Needled » Fri Oct 09, 2009 7:12 am

Here’s a link to The Society of Interventional Radiologists -- http://doctor-finder.sirweb.org/details.cfm?xid=134846 This is a good place to find interventional radiologists in your area to send Dr. Haacke’s new website and info. Use the “Doctor Finder” function at the left of the screen. You get the broadest results when you type in your state and then under “Area of Expertise,” choose “search all.” It includes docs at universities as well as hospitals.
I would bet there's a similar organization/website for vascular doctors...
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Postby mrhodes40 » Fri Oct 09, 2009 8:17 am

Needled good reference! If you live in a place where there are way too many people to possibly contact, choose the specialty "Angioplasty". That means stents in arteries and veins. You won't be bothering people who do interventional radiology for uterine fibroids and things like that when you narrow your search that way.
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 zap » Tue Oct 13, 2009 12:30 pm

zap wrote:I sent it to the head of Vascular Surgery @ the Mayo Clinic, and to Society for Vascular Medicine just to see if anyone there might get interested.


got a response, kind of:

Thank you for your e-mail. It has been forwarded to the SVM Executive Committee for their consideration.

Best regards,
Denise Y. Mueller, Administrative Director
Society for Vascular Medicine
111 Deer Lake Road, Suite 100 Deerfield, IL 60015 USA
Tel +1-847-480-2961 | Fax +1-847-480-9282
dmueller@vascularmed.org
www.vascularmed.org
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Postby Needled » Wed Oct 14, 2009 11:41 am

I got so caught up in all the information that I just noticed this on Dr. Haacke’s website – there is a donation fund. I called to confirm, and the fund is dedicated to his MS-MRI project. You can donate by mail or on-line by PayPal. Of course donating is a good thing to do just for its own sake, but keep in mind that some organizations put you on their mailing list and send updates or newsletters once you've donated. :wink: Regardless, dedicated funds are the best kind. If anyone’s interested, here’s the link: http://ms-mri.com/donate.php

By donating to this MS project you are helping to enhance MS research in the areas of:

1. Vascular Abnormalities in MS
2. Increased Iron Content and Its Relationship to Vascular Damage in MS
3. Hemodynamic Changes in the MS Brain
4. Monitoring Patient Recovering After Treatment in MS
5. Chronic Cerebral Spinal Venous Insufficiency (CCSVI) Effects in General in MS
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Postby gibbledygook » Thu Oct 15, 2009 5:04 am

Do you think raising money for this fund would be better than for Prof Dake's fund? I'm torn between the two.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Sharon » Thu Oct 15, 2009 6:31 am

Gibbs, I think there are going to be many new studies in the next six months ---- everyone of them is going to need funding. You will probably have a "buffet" to choose from. It comes down to your own personal choice - I doubt if one is going to be better than the other. IMHO - they are all going to be good!

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Postby gibbledygook » Thu Oct 15, 2009 6:36 am

I think I'll try to fill Dake's fund then. 8)
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby mrhodes40 » Thu Oct 15, 2009 9:25 am

Doesn't it feel great to DO something?? :D :D :D
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 daniel » Thu Oct 22, 2009 6:50 pm

Needled wrote:Here’s a link to The Society of Interventional Radiologists -- http://doctor-finder.sirweb.org/details.cfm?xid=134846 This is a good place to find interventional radiologists in your area to send Dr. Haacke’s new website and info. Use the “Doctor Finder” function at the left of the screen. You get the broadest results when you type in your state and then under “Area of Expertise,” choose “search all.” It includes docs at universities as well as hospitals.
I would bet there's a similar organization/website for vascular doctors...


This is great! Thank you for linking this
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