Round 2 post

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

Postby Loobie » Mon Sep 14, 2009 11:55 am

Just got in and am getting ready to go out to Stanford and take Dake and the team some cookies! Kind of like the teacher and the apple thing! :lol: Ready to go tomorrow, and I can EAT!!!!
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Postby loobiesmom » Mon Sep 14, 2009 2:41 pm

Hi Son! So glad your journey out to Palo Alto was safe. I miss being there this time! Talk to you soon.
Thanks to all of you who have sent Lew support and encouraging messages. You are a great community and I appreciate you all very much.
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Postby LR1234 » Mon Sep 14, 2009 2:44 pm

Hi Loobie's mum, nice to meet you! we are all rooting for your son, he is a great guy.
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Postby Needled » Mon Sep 14, 2009 3:46 pm

Lew, I want so much for this visit to help you. I'll be thinking of you tomorrow and waiting for your posts. Keep the faith. You know you're in the best hands possible.
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Postby Jamie » Mon Sep 14, 2009 4:33 pm

This is the ONE brother!!

Myself, Mel and Mary will be in your honor tonight!!

We're there soon, bummed our paths didn't cross but they will one day!

Good luck mate and with all this fresh knowledge in Dake's bulging forehead I'm sure your weirdness will be fixed!
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Hi Lew

Postby lesley823 » Mon Sep 14, 2009 4:34 pm

Hi Lew, it is Lesley, I am so excited about this....I have spoke to Erin and she told me she is going out there for this as well...I am really wanting to check into it...I am not sure if I am good canidate for it but I would to think that I am. I am going to contact them as soon as I can...I hope all goes well with your visit....Let me know if you could give me any suggestions about getting the procedure done. Thanks
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Postby bibliotekaren » Mon Sep 14, 2009 4:42 pm

Good luck Lew -- full speed ahead! I really hope there's a second chance waiting for you!
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Postby cheerleader » Mon Sep 14, 2009 5:53 pm

We're praying for you...holding you close. Good idea on the cookies! Get sleep tonight, and keep us all posted on how things go. We're all with you, Lew-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Mon Sep 14, 2009 8:08 pm

LEW,

Just wanted to say prayers will be lifted for you and know David and I are thinking about you, Dake and his team.

Sleep tight and have a great day tomorrow.

Waiting to hear....

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 Loobie » Mon Sep 14, 2009 8:33 pm

Thanks all,

I can no longer force myself to stay awake (the 3 hour thing is screwy!), so it's off to bed and I'll let you all know what we decide on!
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Postby CNClear » Tue Sep 15, 2009 3:05 pm

Lew...We are thinking of you and sending all the good energy we can muster, out your way! Lisa (from HS) sends you good thoughts, too!

Lisa
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Postby Loobie » Tue Sep 15, 2009 3:58 pm

Well it couldn't have gone better today, even the weather. My right side stents have fully incorporated just the way he wanted to see it, so that side is "done". He also saw what he wanted to see out of my "bucket handle" collateral. The valve he was so fascinated with, he thinks is just not opening up at all. So it looks right, but it apparently is not opening up when it should and is actually severely restricting flow. So the concept is to go around it with the catheter and force the flow from the other side to verify, and then stick a stent right in the middle of it. Sounds good to me. He also thinks that my shoulder issues are a pinched nerve and it may take some time to unpinch, but if it doesn't, then we are going to have to make some room, but I'm not thinking about that for now. The left side stent won't be put in that same area as the right was where everything goes through the bone, so it shouldn't be as restrictive of a condition. Also, as has been noted before, he is using a smaller stent.

Here's the really good part to me. I don't know why or how, but I was having a day like I had a few weeks ago where I just went crazy at work all day and followed it up with a night out with my daughter watching a live band. Well today, all because of my Marie inspired motivation, walked the whole freakin' thing today and didn't peter out AT ALL until the very last leg when we were walking from the Falk center (Dake's office) to the parking garage. That's the longest leg. And it didn't happen until we were out sitting in the sun for about a half hour. No cane even and no help. It all came down to my knee not firing up. Up until that point, my legs were hardly even tingling. It was great. The we went to Whole Foods and I had just had enough so I went to sit in the car; I hated that because I love shopping at Whole Foods. A grand and glorious day in gorgeous NoCal. I honestly don't think we saw a single cloud, it was in the low 80's, and it was just great.

I will post the day after tomorrow after my surgery and let you all know how it went. I'm making sure that Zofram (sp?) is pushed with the morphine every time and I managed to get some MJ out here and am going to see how good that works right after surgery. I know how well it worked about 3 days post op, I'm curious about it the day after and if it will touch THAT level of discomfort.

So I'm going through all that crap again, but I'm very optimistic even though I know it's going to be a few weeks of suck. Never up, never in as they say.

He still said my azygous looks good, but will be exploring tomorrow with the venogram thoroughly. I just can hardly believe I walked the whole thing. After last weekend's camping trip being a "marker" of sorts, as I explained how it felt harder than the one I took right before coming out the first time, it made me very hopeful to walk the whole thing and not struggle. If you'd have asked me a week ago did I think I could have done it, I'd have said no. So maybe it's just taking some time and the good flow on the right side IS having some effect. One thing is for sure, you guys know I'll tell all about it!
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Postby Needled » Tue Sep 15, 2009 4:33 pm

AWESOME!!!! I'm so glad you had such a good day -- Dr. D's findings and your walking all around is great news. You're sounding more like the old "new" you, if that makes any sense. Keep it coming, please.
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Postby Sawdoggie » Tue Sep 15, 2009 4:43 pm

Excellent! Who in the heck hopes for stopped up veins besides this crowd! :D I'm glad the one side looks good and that he found something!
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Postby Rokkit » Tue Sep 15, 2009 4:49 pm

This is awesome news. I hope tomorrow goes well.

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