final CCSVI blog post

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

final CCSVI blog post

Postby Loobie » Thu Oct 28, 2010 7:40 am

Well it's been almost a year and a half and I've summarized my thoughts on what having this done has been like in my blog. Check it out!
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Postby blossom » Thu Oct 28, 2010 9:08 am

i have always followed your post with much interest. i too am ppms but, much older and further progressed. i too was treated but not the success you have had . i am glad that you are experiencing the good you are. i'm sure you will keep up on things as they develope. seems ppms may be connected to spinal veins and they can not do much about that "yet." with your age and at least the ccsvi procedure holding things at bay i feel you have a good shot at getting better. have you checked out uprightdr.? very interesting. a lot of ppms have trauma's before onset ms. this definitely was my case. but we each have to try to find a path that works for us. no stone unturned. as you are retired hopefully your free time allows you to heal, search and find your path. i hope you pop in from time to time and let us know. the very best to you.
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Postby MrSuccess » Thu Oct 28, 2010 10:59 am

loobie - thanks for the update . keep in mind ... that TIMS is now much bigger in scope and content ..... compared to the early day's when you , MarieRhodes .... Cheerleader .... and all the other CCSVI pioneers first started this incredible CCSVI journey .....

new TIMS readers will probably not know your story ... and the important role you played in getting this off the ground .

I have read your blog . As always ...... a good read.

As your corner man ..... I'm sponging you off ..... putting more grease on your forehead ...... and sending you back into the ring .....

you're doing better than you think ............. :!:

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Postby KikiT » Thu Oct 28, 2010 11:28 am

Good Luck Loobie and thanks for all your honest input and analogies.
Have followed you from beginning, glad you're OK .Good Luck to you and my wish for your wife is that you get a new hobby.........soon!(lol)

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Postby cheerleader » Thu Oct 28, 2010 11:36 am

thanks for sharing, Lew---I admire your honesty and spirit and writing. And it goes without saying that we'd all hoped there would be more recovery for those with progressive disease. I still hold out hope there's more to be learned from this discovery....especially for you.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby ErikaSlovakia » Thu Oct 28, 2010 11:41 am

Hi Lew!
Thank you!
I also hope there's more to be learned from this discovery.
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 Loobie » Thu Oct 28, 2010 11:46 am

Thanks for all the support guys. It means a lot!
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Postby prairiegirl » Thu Oct 28, 2010 12:29 pm

I've really enjoyed reading your blog and your posts here, Lew. Thanks again for being one of the "guineas of the highest order" (your words :D ), and for all that you've done to help others learn about this journey. Keep on postin' and we'll keep on readin'. Very best to you, enjoy your retirement and wish you lots of good times ahead.
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