Catfreak's Trip to Stanford!!

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

Postby bibliotekaren » Tue Sep 01, 2009 4:08 pm

Cat,

I'm happy for you -- wishing you the very best at Stanford!

Donna
Last edited by bibliotekaren on Tue Sep 01, 2009 4:10 pm, edited 1 time in total.
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Postby Artifishual » Tue Sep 01, 2009 4:08 pm

good luck Cindy!! be sure to take pictures, hehe :)
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Postby prof8 » Tue Sep 01, 2009 6:03 pm

Hi Cat, just wanted to say good luck with the visit! Hope you have a quick recovery.
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Thinking of U..

Postby radar22 » Wed Sep 02, 2009 8:46 am

Good Luck. I posted on ur other site, but it looks like ur keeping current with this one.

Just wanted u to know that I am thinking of u today and will be watching for ur post's!!!

Not to repeat myself, but I think u will see this post first, today is Pepper's (thanks 4 the name) 8) and Chili's 7month bday. I thought that was a good sign. They were born 2/2 (also a good sign) Just take my word 4 it. :lol:
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Cat

Postby ladystewart » Wed Sep 02, 2009 9:51 am

Good--have fun. Much, Much deserved!!!!!!!!!!!!!!
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Postby whyRwehere » Wed Sep 02, 2009 1:55 pm

Hope all is going well!! Can't wait to hear!
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Postby catfreak » Wed Sep 02, 2009 2:31 pm

OK, I am back from all my testing and to see Dr Dake. I meet Angela and Alex, they are both great as is Dr Dake.

I have two occlusions in my left jugular. One is really high and he does not think he can do anything to it unless he has too. It is very crooked more than 90 degree angle and really hard to work on. The other is right at my left ear and he can stent it with no problem. He will fix the lower one and see of the collateral veins (which were huge) stop flowing and then go from there. My azygos was huge and he said along with my right jug was taking all the load.

He also mentioned that my MS lesions did not look that bad and he showed them to us. They looked smaller than they did 18 months ago????

So, tomorrow I go in at 9am for the procedure and he feels like he can help with most of my problems!!! Yeah!!

I posted last night but it got lost in cyberspace somewhere.

We landed in San Jose and took the VTA Bus (free)to the Caltrain Station and rode the train (8.50 for 2 tickets) to Palo Alto, the Sheraton is right there so it was very easy. The Margerite bus (free) goes all over the area so we really don't need a car. Rode it to and from hospital today and will do the same tomorrow. Maybe this helps others going.

This is all for now. We are going to bum around and maybe take the bus to the shopping center. I think I will celebrate and buy a new handbag! That is my weakness!!

Later Cat :P :P :P :P
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 whyRwehere » Wed Sep 02, 2009 2:35 pm

Glad I heard that before going to bed. Good luck tomorrow and thanks for the update!
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Postby Sharon » Wed Sep 02, 2009 2:57 pm

Cat - great to hear from you! So, you will have at least one stent in the left jugular. Dr. D. will take a look around at the right and the azygos while you are on the operating table just to make sure. Go out and have a nice time this afternoon and evening. Good luck tomorrow and know that I will be thinking of you.

Your transporation info is really going to be useful to others. I think I spent $250 to rent a car-- a lot of money in comparison to your train ride and the free bus rides. Good work, Cat--you are nominated as the new TIMS Transportation Secretary!

Take care,
Sharon
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Postby radar22 » Wed Sep 02, 2009 4:07 pm

Happy to hear your getting a new handbag. I have the same weakness!!

Also happy to hear you're able to have the procedure. That is weird your lesions look better. I know they can be active v.s non active and I heard they can disappear on one MRI and be there on another. Idk y. I call it blinked off. Blinked on.

Well enjoy your night and I'll be checking in on tims 4 u. :wink:
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Postby cheerleader » Wed Sep 02, 2009 4:17 pm

Hi Cat-
Will be thinking of you tomorrow....hope Dr. D gets your blood flowing and sends those collaterals packing! Get some sleep and know you're in good hands.

I think we're going to learn that those lesions just aren't as important as everyone thinks. Jeff had over 20 (!) and as Dr. D. said, you'd never know it to look at him. His stayed the same for 2 years now.

Good thoughts and high hopes for healing!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby prof8 » Wed Sep 02, 2009 4:18 pm

Hi Cat-- good luck with the surgery. Do you think your lesions are smaller because of being on Tysabri?? That can happen.
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Postby Needled » Wed Sep 02, 2009 5:19 pm

Cat, I'm thrilled he found something and he can fix it. That's great news! I will be thinking of you throughout the day tomorrow. Chip and Putt look like they're thinking deep cat thoughts for you, too -- or maybe they're just looking to get more treats from me. :roll:
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Postby Jamie » Wed Sep 02, 2009 6:21 pm

Go Cat!
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Postby mrhodes40 » Wed Sep 02, 2009 8:10 pm

I don't know if this plays a role in your lesion size but I know that different machines take pictures in a different way and that can make a difference in how things look.

but barring that it is a cool deal cause it means there's still healing going on in there! Yeah you! I hope you have a great experience and easy recovery. I was fascinated by the whole process in the operating room.

I am a really curious person so I actually enjoyed the whole thing, the venogram the process of how it all figured out....it was kind of fun. They don't like it if you talk to much and ask a ton of questions though, Dr D will tell you to relax :wink:

BTW if you are allergic/react to to any anesthetics or analgesics remember them now....

I personally can't take Fentanyl, which is a big favorite with everyone cause it is a long acting morephine- like drug, but it makes me vomit within moments of being put in the IV---I knew that and was able to say NO FENTANYL give me dilaudid.

I learned that lesson on a hysterectomy........was on fentanyl for a whole day before we figured out what it was that was making me sick.

good luck to you!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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