Fast turn around for Dake!

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

Fast turn around for Dake!

Postby prof8 » Tue Aug 04, 2009 3:38 pm

I mailed my records yesterday afternoon through Fed-Ex and they arrived at Stanford this morning. Dr. Dake called me at 2 pm HIS TIME to talk. Quite impressive. The guy must be a machine!!! Anyhow, I can come have the procedure if I like -- although the wait time is now pushed up to September, maybe even mid Sept. since there are another 25 people lined up after the 25 he has already done.
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Postby Jamie » Tue Aug 04, 2009 4:11 pm

wow!
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Postby prof8 » Tue Aug 04, 2009 5:19 pm

Just a question for those who have had the procedure--I forgot to ask Dr. Dake this today. Has anyone had this procedure while on Tysabri? Thanks!
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Postby catfreak » Tue Aug 04, 2009 6:44 pm

Lew was on Tysabri but he stopped. I am also on Tysabri and Dr Dake knows this. So, it must not be an issue.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby prof8 » Tue Aug 04, 2009 7:10 pm

Thanks Cat! You haven't had the surgery yet, right? Are you going to stay on Tysabri even after stents are put in?
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Postby Jamie » Tue Aug 04, 2009 7:22 pm

Mel was on copaxone and stopped.

She's also had high dose chemo.

Immune suppressants don't seem to be a problem.

Just as well really as most people will have had one of them at some point.
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Postby catfreak » Tue Aug 04, 2009 8:56 pm

prof8,

I have not had the procedure yet. I am not sure what I will do about the Tysabri. I go back for my 5th infusion on the 14th. I will have to put a lot of thought into what happens after that.

What about you, what do you think??

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby prof8 » Wed Aug 05, 2009 10:03 am

Hi Cat,

I plan to stay on the Tysabri for now. It seems to be working very well for me. However, I am concerned about PML and I am getting closer and closer to point where the odds of getting PML seem to go up (I'm further along then you). I kind of told myself that maybe I would stop at a certain point. I also was hoping to hold out and stay on Tysabri until the pills came out -- Fingolimod or Cladribine. But I might not be able to wait that long. For now, if I get the surgery, I would stay on Tysabri for a bit longer and then reassess in several months.
Does all that make sense? :)

Prof8
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Postby catfreak » Wed Aug 05, 2009 3:12 pm

prof8.

It makes perfect sense to me. I am holding out for the pills too. But I don't think I want to stay on Tysabri more than 18 months. It gets scary after that, to me anyway. I will more than likely do the same.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby prof8 » Wed Aug 05, 2009 6:24 pm

Cat, I hear ya on the Ty. getting scary after 18 months. I am maybe willing to go for 24 months but I will have to see...I'm over the year mark already so I haven't got much wiggle room left. Maybe I'll bump into you at Stanford! Now I guess it's just sit and be patient for the appointment.
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