Round 2 post

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

Postby cheerleader » Tue Sep 15, 2009 6:28 pm

So glad there is a plan of action for your extra vein, Lew....and really glad the right side is working well, and you felt a burst of Californian energy today. Must be all the good vibes being sent to you from around the world! Stay strong, and know we're here with you tomorrow.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Jamie » Tue Sep 15, 2009 6:28 pm

Lew, I fricken TOLD you man!

This is IT! I am so excited for you and more than a little emotional.

Get in!

Tomorrow dude you're gonna feel like shite after the surgery but it's all good things from here, especially if he can fix your valve.

As we learned from Bologna its all about flow. That's how Dake's looking at it now, the valve may seem normal, with no stenosis but there's no FLOW and that's the key.

Keep going my guinea pig pal and we'll all meet up in the mansion two years from now.
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Postby radeck » Tue Sep 15, 2009 7:23 pm

Good luck Lew.
Last edited by radeck on Sun Jan 24, 2010 4:31 pm, edited 1 time in total.
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Postby CureIous » Tue Sep 15, 2009 8:59 pm

Last edited by CureIous on Sat Oct 03, 2009 3:47 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video:, Virtually symptom free since, no relap
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Postby ErikaSlovakia » Wed Sep 16, 2009 12:36 am

Hi Lew!
I am so happy for you! :D
I was very nervous reading all your posts.
Good luck!
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby LR1234 » Wed Sep 16, 2009 3:14 am

Hey Lew, I am so glad you are in a better place than you were last week.
This is exciting news and I hope this will make more of difference for you.
My fingers are firmly crossed x
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Postby Ana » Wed Sep 16, 2009 4:16 am

I'm also glad that you feel better and that Dr. Dake found a way to help you. I've been reading your blog and your posts every week so even though we don't know each other personally I feel like I know you since a long time.

Maybe this helps you, too : I read something about congestive venous myelopathy which is also a venous disease and is cured by an operation of the venes. They claimed that it takes about 1 year to see the whole success. So I guess we have to be a bit more patient.
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Postby Loobie » Wed Sep 16, 2009 6:45 am

Ana wrote:Maybe this helps you, too : I read something about congestive venous myelopathy which is also a venous disease and is cured by an operation of the venes. They claimed that it takes about 1 year to see the whole success. So I guess we have to be a bit more patient.

That's the corollary I've been drawing for a while now. I just need to settle down! But it's hard since you are so on the lookout for advancement of your disease. I could hardly sleep last night, so here's hoping I will sleep well in the hospital this time.

Earplugs - check
Tell the nurse to put the pulse monitor NOT to go off at 50; just about my heart rate when I'm ready to crash - check
Nausea med pushed with pain med card to give the nurse - check
Foley requested - check

Here we go!
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Postby Arcee » Wed Sep 16, 2009 7:30 am

Lew, glad you've got it all checked off, have a great attitude and are ready to go. Will be thinking of you all day today and waiting to hear from you. Just thrilled that round 2 is working out!
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby catfreak » Wed Sep 16, 2009 7:43 am


I can't wait to hear from you tomorrow.

I remembered the nausea meds from your earlier post and made them give them to me prior to and after surgery and any time they gave me a percocet. I only punched the morphine 2 times. I just don't do well with pain meds.

You are in good hands!

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 mormiles » Wed Sep 16, 2009 9:09 am

Hi Lew, Thank God Dr. Dake found a villain to conquer. I'm glad you'll be working on yourself to be patient. Forgive me if I've missed this information, but are you RRMS, SPMS, or PPMS?

In any case, it's such a blessing that Dr. Dake found your remaining venous problem and that it's getting fixed today! You have my prayers for now and for your recovery.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mrhodes40 » Wed Sep 16, 2009 1:43 pm

Hey Lew, fantastic news! I am so glad you had the great walking--that is a post I could have written! gald you were inspired to attempt it. You report is the same thing with regards to thimking I could not do it because it was such a big walk then being surprised that I did actually do it I am so happy for you, we need that epiphany that we are on the right path, it makes such a difference....I am so glad you have had yours and wow they have a PLAN!!

I hope this surgery is very easy compared to the first one what with your plans in place...
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you... This is my regimen thread Read my book published by McFarland Health topics
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Postby skydog » Wed Sep 16, 2009 2:39 pm

Hope to here from you poolside with sweat on your brow soaking up some California sun and enjoying it! Peace and Health Bro, Mark
Plant a BIG Garden Live in the Moment
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Postby Jamie » Wed Sep 16, 2009 9:12 pm

hope all went well dude.
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Postby chrishasms » Thu Sep 17, 2009 9:23 am

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