Round 2 post

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

Round 2 post

Postby Loobie » Sat Sep 12, 2009 11:06 am

I say round 2 because I think my visit might be more than just a check up on the stents on my right side (my only ones). I will be greatly dissapointed if he says "everything looks great! We're not going back in". I don't imagine that will be the case, but here is the thread where I am going to post what he does decide to do with me next week. I hope more intervention is required. I know I carry on about being OK with it just leaving me as is, and I really am when the alternative is to keep getting worse. However, any uptick in my functioning will be more welcome than winning the lottery. If it could just get me back to an EDSS of 3. I was still able to go places and do things socially at that level and I'd love to at least get that part of my life back. Either that or some better bladder functioning. Those two just don't seem inexorably intertwined on the surface. But when all I had was the bladder and the legs were still strong, I could walk, or even jog, to the restroom many, many times and could still attend sporting events, festivals and all the type of stuff we used to do; I'd just be in the BR all the time, but I could still GO. When both are shot, I've got one good trip and then no more walking very well. So I'm a liar if I say "I don't care if nothing comes back". I DO care and I want it more than anything, but not progressing is a close #2. I guess it's the old hope for the best and prepare for the worse, with the best being some regaining of function.

So I'm sure I'lll be on here before I leave early morning Monday, but I wanted to just set this thread up since I was thinking about it.

Pray for me, wish me luck, whatever your bag is. Let's hope here's one for the progressives.
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Postby Ernst » Sat Sep 12, 2009 11:14 am

I will pray for you Lew, truly hope that you'll get your life back. Be strong.
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Postby whyRwehere » Sat Sep 12, 2009 11:21 am

Good Luck Lew. If you do well, it will be a boost...I think my husband is at the same level as you and has the same issues. Please be well.
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Postby skydog » Sat Sep 12, 2009 11:29 am

Lew, Hope something is found. I felt the same way on the last visit. Wished for the best and expected the worst, which it turned out to be. I am ready for what ever Dr. Dake sees fit to do for us. Have a great trip. Cheers, Mark
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Postby skydog » Sat Sep 12, 2009 12:36 pm

Hang them Back Up! and be proud that you earned those trophies. I know how you must feel. I have boxes of trophies from Hang gliding, Sailing, Motocross. Never displayed them before, but now thinking of displaying a few just to remind me of how good life is. Next trophy, MS cured. Hang in there. Cheers, Mark This is a reply to your other post but thought it would be better here to remind you! You are still GREAT!!!
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Postby LR1234 » Sat Sep 12, 2009 1:44 pm

I am praying that Dr Dake finds the reason why things have not been going great for you, and that he is able to fix it xx
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Postby Ana » Sat Sep 12, 2009 1:54 pm

Keeping my fingers crossed for you, too.
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Postby Lyon » Sat Sep 12, 2009 2:14 pm

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Last edited by Lyon on Sat Nov 26, 2011 10:23 am, edited 1 time in total.
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Postby catfreak » Sat Sep 12, 2009 2:51 pm

Lew,

You know you will be in our heart, minds and prayer this week! You are in good hands.

Cat
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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 mrhodes40 » Sat Sep 12, 2009 3:03 pm

I hope he has a good answer for you Lew....I am grateful that this is out now and not 5 years from now....

but what I REALLY wish is that is came out 5 years ago and more of this stuff was already known....

thanks for all of us for doing it(I wish I had an applause smiley)

:D :!:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby Rokkit » Sat Sep 12, 2009 5:11 pm

I'm pullin' for you bro. I also hate to mention it, but the info from Bologna indicates we may have to wait 18 months for this thing to turn around. I sure hope that's not the case. But if it is, I don't go to Stanford until October, so at least you'll be a few months ahead of me. :D

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Postby javaneen » Sat Sep 12, 2009 5:29 pm

I will be praying for you and sending you positive thoughs. Good luck with everything...You know you are in good hands.
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Postby Sport » Sun Sep 13, 2009 8:43 am

Good luck, and I look forward to your update.
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Postby CRHInv » Sun Sep 13, 2009 10:11 am

I will be thinking of and praying for you. I don't pray much, but I am sure getting a lot of practice lately. I can't wait to hear from you. I can't wait to see the post that the trophies are going back up!
Take care! Beth
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Postby Arcee » Sun Sep 13, 2009 11:27 am

Lew, I am bummed I won't be there again with you this time, but know that I am thinking of you and hoping for the very best. Will eagerly await and send texts during this follow up week of ours!
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
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