What to do with a less than supportive neuro?

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

What to do with a less than supportive neuro?

Postby lucky125 » Mon Dec 07, 2009 12:37 pm

I am new here. I introduced myself a few days ago.

I have found an interventional rad. in NY who is willing to treat me if his rad. dept will test me. I forwarded to him Dr. Simka's explicit instructions on Doppler testing. He is checking with them. We are optimistic.

He is the BIL of a friend, and his father also has MS. I think I hooked him. He had never heard of CCSVI before we spoke on Friday.

In the meantime I contacted my neuro's nurse and asked if the very big teaching hospital in which he works would do Doppler and MRV testing on me.

Her response, "Dr. X wants to wait. He says it might make sense in some patient, but not most."

HUH?

I am seeing him on the 21st. I have enjoyed a wonderful relationship with him for many years. He is very aggressive in treating MS. But I am worried.

I am pursuing the testing on my own. But I'm not used to disagreeing with him.

Has anyone else had a similar experience? How do I manage it?

Thanks so much for your help! I am loving this place!
Last edited by lucky125 on Thu Jan 21, 2010 3:52 pm, edited 1 time in total.
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Postby bestadmom » Mon Dec 07, 2009 1:42 pm

I had a similar problem. I got my disk from Buffalo, and a friend who is an IR read it and said the stenosis was rermarkable and severe. I called my neuro to see if he'd like to see it and they said no, but not to make any decisions without consulting them first. I thought that's what I was doing.

I doubt I'll be returning to that neuro. Obviously my needs and goals aren't the same as his.
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Postby ozarkcanoer » Mon Dec 07, 2009 2:23 pm

:D :D

bestadmom... I'm so glad you got to participate in Buffalo. AND you have a friend who is an IR !! What is your next step ?

ozark
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Postby bestadmom » Mon Dec 07, 2009 2:27 pm

My next step is to dream of taking one. Until I have an option that is covered by my insurance, all I can do is keep focused on my outreach campaign. A trip to Poland, albeit within my budget, would be physically impossible for me at this point.
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Postby ozarkcanoer » Mon Dec 07, 2009 2:31 pm

:D :D Hoping for the best of luck to you, Michelle. I thought that SUNY-Stonybrook was going to do some procedures. Or is that just a rumor ? You aren't too far from there are you ?
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Postby bestadmom » Mon Dec 07, 2009 2:33 pm

Stony Brook is doing something, but I don't know what yet. When I called, they couldn't tell me anything yet.
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