Looking for Help in Kansas

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

Looking for Help in Kansas

Postby ShakyJay » Sat Jan 09, 2010 11:08 pm

I am really wanting to get the surgery performed for my MS. The problem that I am having is where do I start?

I currently do not have a neurologist, I have just recently switched to the doctors at the Rocky Mountain MS clinic. And when I asked them about the treatment, he just said that we should start Tysabri and give that a shot. I have not had a lot of luck with Neurologists. Can my everyday doctor give me a recommendation to get the vein scan. Sorry I don't know all the proper terms, but the travel and what not just became an option for me, before it was just a dream. I would go to Italy, but I read on here that the doctor there is not taking anyone who does not live in Italy. Right now I have great insurance and even money to spend to do what needs to be done.

So any advice on where to start or what to do would be great.

It's like I am starting all over again and am lost in the fog, but at least this time I have some nice people to poke me along
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Postby Mechanicallyinclined » Sat Jan 09, 2010 11:24 pm

Read the sticky's at the top of this section. Also go to CCSVI on facebook.
Go to the question and answer area and it will answer some questions for you. Just take a little bit of time and educate yourself and that might give you a better sense of direction.
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Postby Cece » Sun Jan 10, 2010 12:00 am

Yes, your regular doctor can give you the referral. There are protocols somewhere on this site that you would give to the radiologist when you meet him. You are looking for an MRV. This is all in its infancy still so you may meet with resistance. Good luck. Dr. Zamboni in Italy does not do the procedure but Dr. Simka in Poland does. He is booked out through the end of the year, I believe, but still a possibility.
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