This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

wow!

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!

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

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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.

Thanks Cat! You haven't had the surgery yet, right? Are you going to stay on Tysabri even after stents are put in?

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.

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.

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

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.

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.