another one for Stanford, and a question

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

another one for Stanford, and a question

Postby Arcee » Tue May 19, 2009 5:20 pm

Hi All -

I've got an appointment with Dr. Dake starting July 14th. As so many have said, he and Angela could not be nicer. I will eagerly read about those who go first, and will happily post during my time there.

Now that I have booked it, I started wondering about the implications for my using Copaxone. I will need to discuss it all with my neuro, but I am wondering if anyone who has gone/is going has changed anything.

- Arcee
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Postby cheerleader » Tue May 19, 2009 5:24 pm

Congrats, Arcee...
Hope you find some answers at Stanford!
Jeff's still taking his copaxone and supplements. He's waiting to see the 2 month MRIs to re-evaluate, but he's been stable (no progression) on his program for 2 years, and doesn't feel like giving up his routine. If you're doing well, I'd recommend sticking to your program until we have more research. Just my 2 pennies.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Arcee » Wed May 20, 2009 5:56 am

I'm thinking that is the right default too. Thanks.
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Postby peekaboo » Wed May 20, 2009 7:01 am

Good to have another on board...I believe Dr Dake wanted a minimum of 10 subjects to write a paper about this procedure. I bet he will have more than he ver expected which is a good thing, the larger the sample the more accurate the findings will be.
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Postby Sharon » Wed May 20, 2009 10:31 am

Cheer - is Jeff going back to Stanford to get his 2-month followup MRI's, or will he be going to his neuro or to a vascular doc in So. Calif? It could make a difference on coverage by insurance.

Sharon
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Postby cheerleader » Wed May 20, 2009 11:06 am

Sharon wrote:Cheer - is Jeff going back to Stanford to get his 2-month followup MRI's, or will he be going to his neuro or to a vascular doc in So. Calif? It could make a difference on coverage by insurance.

Sharon


Jeff's blood work is being monitored here at home by his GP, to make sure his coagulation numbers are good, but he plans on going back to Stanford for updated MRIs and MRVs in early July (maybe we'll see Lew?) I think Dr. Dake wants them done there for his research (consistency of machines and technicians) so maybe that might make a difference?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Wed May 20, 2009 11:12 am

Okay, thanks Cheer - Dr. Dake did not talk to me about the follow-up so this is good information.
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