Notes from CureIous' at Stanford

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

Postby IbRiz » Wed Nov 25, 2009 2:04 am

Tillykke med fødselsdagen Mark!!!

That's "happy birthday Mark" in danish :D

I am so happy to see that the procedure works that well for you.

I am actually also approaching the big 4-0 in a month.
I now have an appointment to go and visit dr Simka in Polan for doppler and MRV scanning.
Keeping my fingers crossed (well some of the time anyway :-))

Christian
Last edited by IbRiz on Wed Dec 02, 2009 11:32 pm, edited 2 times in total.
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Postby CureIous » Fri Nov 27, 2009 8:32 pm

Wow thank you Christian for the Danish Bday wishes!
How cool is that?
My darling sister in law made a photo collage 20x30 inches wide for me and everyone sent in old/new pics to put in it.
Oh, the collage was actually a big picture in itself.
She is really something on a mac! I'm in awe.

In another twist to the big 4-0 saga,
I MISSED the party my childhood sweetheart threw
for me on her blog http://sarazarr.livejournal.com/246494.html,
musta been busy doing something else argh that's embarrassing!
Image
Last edited by CureIous on Fri Dec 11, 2009 1:30 pm, edited 4 times 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: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Ruthless67 » Fri Nov 27, 2009 10:37 pm

Mark,

Those before & after pictures are the most amazing things I've scene! Your after picture is completely different around the edges, more dense fogged area, I don't know what it is, increased activity or is it maybe less iron, or what? And did you notice the two areas that look like your eyes? Kind of cool looking once you see them; I know it not your eyes, but I don't see them at all in the before shot. But of course, to my layman eyes, I haven't any true idea of what I'm looking at.

Lora
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Postby CureIous » Fri Nov 27, 2009 10:41 pm

Thanks, and sorry for the super wide shot but wanted to put the big one up. I will say that the follow up is ever so slightly rotated from the before shot, and the vagaries of magnetic imaging make it possible you actually are seeing some shadowing from my eye tissues etc. I know, it's kinda weird huh? Maybe those are the hamsters I tell my daughter are up there making things work... :)
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: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Boreas » Sat Nov 28, 2009 3:33 am

I'm so sorry but I don't get it - what's sooo different on the "Before" and "After" shots? The right one seems sligtly less messy, but ... could you explain it a bit for us uninitiated. give us some mr-ccsvi-for-dummies, please :oops:
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Postby CureIous » Sat Nov 28, 2009 5:54 pm

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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: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CureIous » Sat Nov 28, 2009 6:58 pm

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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: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Boreas » Sun Nov 29, 2009 1:59 am

At least I can see something now, thanks a lot CureIous! And the best proof that these images have to tell a story is that you're better now.
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Postby CureIous » Sun Nov 29, 2009 7:40 pm

Boreas wrote:At least I can see something now, thanks a lot CureIous! And the best proof that these images have to tell a story is that you're better now.


I do hope you understand Boreas, the first ones were put up for posterity and discussion, not to "prove" anything. They are the very best 3D shots side by side that I have. Do you know there are over 8,000 images to go through on 7 different CD's? 1 at a time no side by side instances of that infernal software can be opened on 1 computer.
Takes a long long time to figure it all out. I'm reticent to just blithely paste any two and say, "that's them" because there are many of them that could make the case, but they would be the incorrect ones! I want the right ones, period.

Anyways, figure I got the CD's might as well share whatever I could learn from them.

So Boreas what is your story are you an MS patient looking for info? Just curious as I didn't see many posts other than conspiracy and needling.

Mark.
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: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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CCSVI Journal Article

Postby Yvette » Mon Nov 30, 2009 7:58 pm

Hi Everyone,
I joined tonight and am very excited about this new research and treatment.
Here is the link for the Dr. Zamboni's Journal of Vascular Surgery article furnished to me by the co-medical director of the MS Center, a nonprofit, that I direct in Louisville, Kentucky, not affiliated with any national MS organization(www.loumscenter.com).
I also have MS, relapsing/remitting and have had MS for 20 years. My father also had MS and died of complications of MS in 2002. I am ambulatory and have been on Tysabri since May 2007. I find Dr. Zamboni's research promising and exciting because I am at a point with my Tysabri infusions where I am now in unchartered territory. In other words, the pharma company doesn't have any data for those patients who are beyond 24 infusions. I am on my 33rd infusion. I feel great and my MRIs have been stable, no new activity since August of 2007. But, I believe that with every additional infusion, I increase my chances of developing PML (2/3rds of those diagnosed with PML have had more than 24 infusions).

I am now in the process of researching my options for this surgery and would like to hear from all of you as to where I could possibly go for this surgery. Please help me. I need to advocate on my own behalf and would love any advice you can give me. In the meantime, please enjoy the article and I look forward to hearing from you!

https://host380.hostmonster.com:2096/3r ... OX&_part=2

I appreciate all that I have read and admire the proactive stance all of you have taken!
Yvette
:D
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Postby ozarkcanoer » Mon Nov 30, 2009 8:04 pm

Yvette... This is great !!! Welcome to TIMS. But when I click on the link it asks me for a login ????
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Postby mrhodes40 » Mon Nov 30, 2009 8:08 pm

Hi Yvette!

welcome to the discussion and I hope you enjoy reading everything. Try to read the "sticky" posts at the top especially, they are all material that we felt was especially important to understand. It is not as much as it seems at first. :D curious says he got up to speed in 3 days of intense reading...

I want to offer that someone here discovered that Tysabri has a rebound after going off of it. This may make doo-doo of your asssessment of whether or not any other treatment actually helped at all or not , so it might be wise to let the body go off and stabilize before doing anything else, talk to your doc about how you might handle this tricky transition.
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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Postby CureIous » Mon Nov 30, 2009 8:15 pm

mrhodes40 wrote:Hi Yvette!

welcome to the discussion and I hope you enjoy reading everything. Try to read the "sticky" posts at the top especially, they are all material that we felt was especially important to understand. It is not as much as it seems at first. :D curious says he got up to speed in 3 days of intense reading...




Yes, intense. Meaning night and day. Now with all this great blood flow I don't wake up tired anymore either! :) Mark
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: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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CCSVI

Postby Yvette » Mon Nov 30, 2009 8:17 pm

Thanks for the responses.
I completely understand that if I get off Tysabri, I will more than likely have a relapse within 3 to 6 months. The severity of the relapse is what frightens me because it would be a crap shoot as to whether its an old symptom back up and running or a brand new attack. I wonder if I could go straight to the surgery before the "3 month" period concludes.
On a separate note, I am sorry that the link I posted asks for a login. I can send you the article as an attachment to your email account. If interested, please furnish me with your email and I will send the article.
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Postby Sharon » Mon Nov 30, 2009 8:27 pm

Yvette - Welcome to TIMS! Hope you find as many answers as you have questions.

The Zamboni article you are trying to link to - are you sure it is the most recent article - the article which was to be published in the November issue, but was delayed?

Sharon
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