Notes from CureIous' at Stanford

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

Postby chrishasms » Mon Nov 30, 2009 8:36 pm

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Postby Yvette » Mon Nov 30, 2009 8:42 pm

The article that I have was published on November 30, 2009 in the Journal of Cerebral Blood Flow & Metabolism. It is 14 pages long. I furnished the link earlier, but it is apparently asking for login information. I can't give out the login information since it belongs to the Co-Medical Director of my MS Center, but I downloaded it and am trying to figure a way to attach it to a post. Is it possible? If not, as I stated earlier, I don't mind emailing it to you if you request it.
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Postby CureIous » Sun Dec 06, 2009 2:04 am

Hi all, just wanted to post up a few more pics along with my 4 month anniversary update doohicky I call it. Just for my own curiousity, I delved back into my MRI from 6/2008. I was interested, after having identified the stenosis/collaterals on the "easy to see" MRV from Stanford, could I in fact find evidence for said same on earlier MRI? Obviously back then nobody was poring over the MRI looking for evidence of vein stenosis.

Keep in mind these typical MRI's for us don't go down that far, but far enough that sure enough the collaterals and stenosis DO show up in the lowest parts of the scans. This to kind of give a hint of what it MIGHT look like on someone elses, but it's a crap shoot and there are many artifacts and what-not on these so don't think every thing you see is stenosis or collaterals or whatever. This only works cause I got the MRV cheat-sheet from Stanford...
(Original image deleted by author)

Now diving back into the regular MRI with/without contrast from June/2008, my last bonafide flareup:
Image

Here is a similiar view from a different series:
Image

Goes without saying that those collaterals have been there for quite a few years, probably many years. Not much of a stretch to envision that then the stenosis has been there many years too. I doubt those collaterals just "popped up" when my MS did, rather are evidence of a process that has been ongoing for many years, and for whatever reason reared it's ugly head with full force in 2004. Interesting too that I got *most* of the really bad stenosis and collaterals on the left, but it was my right eye that had turned inwards and problems with ON since then.

As far as my 4 month anniversary update, everything is still going pretty good. I saw somewhere mentioned that I was "100%" haha. Yeah right. Like I never had MS, completely cured. Of course not, and I don't think that, and I have days that I feel more "MS'y" (who coined that? Thank you!), but harkening back to the days after my first flare up, when the healing had begun and the eye turned back straight and I got my energy back and MS seemed like a distant memory while it ran like a computer virus in the background, well it's kind of like that. Not exactly but kind of.

I'll always be more than happy to leave some wiggle room here for things to go sideways, but the only thing still bugging me is the tinnitus which had vanished for awhile, but so what? That always plagued me why stop now? Has zero effect on my life other than being irritating like the trains that go by blaring their horns.

Everything else feels like it's been on whatever plateau I happened to land on for the time being, humming along in a predictable fashion on a daily basis. I absolutely despise going to sleep now. Just too much to do. Wake up and hit it, every day, just like clockwork. That's been the greatest part is rediscovering my mornings instead of trying to just survive them. It's such a privilege to come alongside those without 4 or 5 months of CCSVI knowledge which I admit I'm learning new things every day, and trying to help them. Just separating fact from fiction and keeping them focused on the prize, whatever their goal is, but there is of course as we all know, quite a bit of scuttlebutt for people to sort through, as if just getting up to speed on this isn't enough for someone new, now they have to contend with press releases and half-informed media outlets and blogs, it's a wonder anyone *gets it* now.

Am looking forward to Loma Linda getting their gig off the ground with the SWI testing eventually so some more of us stentoteers can get baselined for future people who come behind us. I think all of us stenters owe (besides gratitude that we came out of it *relatively* unscathed, well most of us) our fellow MSers whatever it is that we can bring to the table to assist them along in their journey, be it a link, an email or phone numbers or heck, just sorting out the ABC's of what this theory entails. Some do better at the overarching administration part, some do better at the one-on-one gig, some do blogs like nobody's business, everyone has a place, I am a firm believer in that. So just do what you are good at if you are so inclined to help out others, which I think most of us are, and hopefully in the very near future this machine which is a real bear to kick start, will hum along on it's own at a nice idle...

Ye Long-Winded One, Mark.
Last edited by CureIous on Fri Dec 11, 2009 1:33 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: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Sharon » Sun Dec 06, 2009 7:40 am

**oops, see my post below**
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Postby Johnson » Sun Dec 06, 2009 1:21 pm

I saw somewhere mentioned that I was "100%"


Yes, I wrote that. Please excuse me for mis-representing. When I see "symptom free, no meds", etc., I can't help thinking that there has been a dramatic recovery. Of course, there could still be relapses. I truly hope not.

edit - I just saw that Sharon took the fall for the "100%" comment... It doesn't matter much, I guess I just have my hopes really high that I can be 100% again.
My name is not really Johnson. MSed up since 1993
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Postby CureIous » Mon Dec 07, 2009 1:29 am

Hm. Not sure what any of this has to do with my update.
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 Johnson » Mon Dec 07, 2009 1:51 am

CureIous wrote:As far as my 4 month anniversary update, everything is still going pretty good. I saw somewhere mentioned that I was "100%" haha. Yeah right.
My name is not really Johnson. MSed up since 1993
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Postby CureIous » Mon Dec 07, 2009 2:03 am

Again, that was a clarification buried in the middle of my update, just in case there was any misunderstanding, without pointing back to any particular post or person, because its kind of over >>>>there in the innocuous category. Sorry I ever said it now, wasn't meant to stimulate controversy
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 Sharon » Mon Dec 07, 2009 8:13 am

Oops, Mark -- I misread your post --- you were saying that someone said you were 100% --- I will edit my post -- now, back to your update.

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Postby Rokkit » Mon Dec 07, 2009 2:59 pm

Mark, I am stunned that you were able to go back and find your stenosis and collaterals on old MRIs! That is awesome detective work my friend. But of course it brings up the question: HOW WAS THIS MISSED FOR SO LONG???!!!

How did someone, somewhere in some MS center not notice this correlation? There has to be radiologists in this world that do nothing all day long but look at the MRIs of MS patients. Unbelievable.
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Postby CureIous » Mon Dec 07, 2009 4:08 pm

Rokkit wrote:Mark, I am stunned that you were able to go back and find your stenosis and collaterals on old MRIs! That is awesome detective work my friend. But of course it brings up the question: HOW WAS THIS MISSED FOR SO LONG???!!!

How did someone, somewhere in some MS center not notice this correlation? There has to be radiologists in this world that do nothing all day long but look at the MRIs of MS patients. Unbelievable.


Man you can't say that enough. That wasn't my first MRI either, but it's same old same old, neuros aren't going to care about what configuration is apparent, or whether three pinholes show up where your vein should be. It's like calling out a plumber, then being mad cause he didn't see the electrical outlet that needed replacing lol. I've printed these pics out on to a nice 8 1/2 x 11 matte photo paper, turned out good too. I'll bring em to my GP tomorrow and share some of the other stuff too, he's a great guy and really interested. My hope is that he can pass off at least something, even drop a hint to his MS patients he has. I know they can't run around recommending anything, but I told him he can use my name and where this site is if they want to dig on their own. Can't hurt right?

It pains me greatly to think of anyone living with this one day longer than need be, if not corrective towards their disability (remains to be seen of course), at least to provide some hope which I guarantee you I did not have at all last year concerning where this was headed. I think it's great too that people like Sammy Jo put her video up, it really helps to see where others are pointing at those pics because everything starts looking like everything else after awhile lol.

We can talk all day long, but boy seeing it in black and white really cuts to the chase when you're talking to others about it...

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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Postby Johnson » Mon Dec 07, 2009 4:15 pm

Rokkit wrote:Mark, I am stunned that you were able to go back and find your stenosis and collaterals on old MRIs! That is awesome detective work my friend. But of course it brings up the question: HOW WAS THIS MISSED FOR SO LONG???!!!

How did someone, somewhere in some MS center not notice this correlation? There has to be radiologists in this world that do nothing all day long but look at the MRIs of MS patients. Unbelievable.


I too have found those "oddities" on my old MRIs. Of course, I am not a radiologist, and I was looking for that specifically, but I find it odd that they mention the disintegrating condyle in my TMJ, venous angioma, cysts in my maxillary sinuses, and other things, but not occluded (or collateral) veins. It brings to mind a line from an old Supertramp song - I see, only what I want to see, but I have to believe in something...
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Postby CureIous » Wed Dec 30, 2009 12:32 pm

Hey I found this thread buried in mothballs, that's a good thing, people are talking!

Yesterday I went to see an ENT for this infernal ear noise, he mentioned Van Gogh cutting his ear off for just that, can't blame poor Van Gogh one bit!

Mainly the appt. was to eliminate objective type tinnitus, as a matter of course, and to get his input. Of course presenting with "Okay, I got 4 stents in my jugular veins " really makes their ears perk up. I had some papers to show him just to skim, brief history of CCSVI and all that, no time for in depth (other patients were waiting), so he ran the obligatory and usual tests, and given the history of this specific symptom, I agree with him that it falls in the venous hum category.

This would explain how and why it increased when on blood thinners (more flow), and the curious thing is, I don't recall having that prior to my initial onset in 2004, when one night I went to bed, and woke up to "MS". That morning I recall trying to focus on things that seemed to be double, and distinctly recall this same song playing in my ear constantly.

Anyways, long story short, it makes sense that with improved flow, one would experience (if it was there already), a more constant "hum". That it is heard in the right ear, is no surprise either, as it (the right internal jugular vein) is noticeably larger in diameter (by 3 mm) than my left side. (see above pics, and remember that right is left, and left is right, like looking through a rear view mirror).

So if one thinks about it, if the side that already HAD more flow in it, is the cause of such aggravation, then stenting IMPROVED the flow, the blood thinners even more so, and now it's pretty much a constant after stopping the thinners, just not as loud. Sleeping on a flat bed aggravates it (no duh there if you are an IBT believer), and makes a nice alarm clock every morning. I'm wondering if sleeping on the right side makes that side larger over long periods, i.e. sleeping differences can possibly account for the differences in jugular sizes left to right on different people. Just a thought.

In the "other than that how ya doing" category, the answer is, just GREAT. Survived 5 Christmas celebrations with the family, none for the worse for wear, did all the driving, participated with vigor, you know, just like normal, nothing remarkable. And that is remarkable!

I made the decision too, to watch both my kids full time (1 is on Christmas vacation for 3 weeks), and juggle everything else. Would not have entertained that notion at all this time last year. Good for them and for me too, I feel like a Daddy again and not some fatigued couch slug. It's great having the short term memory back if I haven't mentioned that a 100 times already. Do I still feel MS'y sometimes? Sure I do. But to do things during the course of the day requires much less force and thinking.

That's bout it for now. Thanks.

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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Postby Sharon » Wed Dec 30, 2009 5:02 pm

Mark!

It is good to hear that you are moving along - things are better than they were last year. If you are like me, sometimes it is hard to pinpoint the changes --- but, you know they are there. I love to hear the stories of MS'rs being able to be a parent again -- good for you. Enjoy! Those little darlins grow up too fast.

Happy New Year!
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Postby CRHInv » Wed Dec 30, 2009 5:26 pm

Good news Mark! I think I am having very similiar results to yours and I couldn't be happier. I bet you really appreciated that extra energy for all your celebrating. Isn't it amazing how much easier things are now?

I have some tinnitus also. I do think there is more since the procedure, but it is still not enough that I am concerned. I really don't even want to think about it or it might start bugging me!

Thanks for updating us!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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