Notes from CureIous' at Stanford

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

Postby bestadmom » Mon Oct 12, 2009 7:00 pm

WOW!! Congratulations on the good news. Have a great time painiting.

I think the flood is due to TIMS. For Dr.Dake, it's becoming a tsunami. He better start teaching his procedure to others, because the line is getting long.
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Postby CureIous » Mon Oct 12, 2009 7:27 pm

Yeah that's what I told him. Sure gonna miss him and Alex for awhile. We got held up in the MRI waiting because someone before us was having claustrophobic trouble. Like duh, I've had what 6 MRIs and 2 of these marathon ones and I UNDERSTAND completely. It's just not something you get used to, but, you CAN think your way into trouble, that's for sure. "go find your happy place" and stay there for awhile.
Also there was a new Tech doing it, experienced but I was her first on the Dake protocol. Her name is Connie, and I REALLY appreciated her constant updates. I recommend everyone going in, talk to your tech for a second, ask them to give you updates it REALLY helps break it down into smaller more manageable chunks. She's my hero. "Okay, this sequence will last 3 minutes", "How you doing in there, good, okay this one will go for 15 minutes", even if it was ONE minute she was talking to me. That REALLY helps alot so talk to your tech! It's no big deal, you have a microphone in there, they have a speaker so broadcast if ya gotta!

Anyways not much partying going on with us fuddy duddys we'll be out of here 1st thing in the a.m.

Just an FYI, and NOT as any indication of anything anyone else should do, I had stopped my coumadin as of last Wednesday and not today. This was a personal decision, and Dr. D. was informed but suggest that anything you do, please always keep him and your own doc in the loop!

Btw is was neat seeing the little circle that is my gorgeous looking vein, with a nice ring inside of it, surrounded by a new lining.

Now if he could do something about my bad attitude we'd be 100%!!! :)

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 Rokkit » Mon Oct 12, 2009 7:31 pm

Hey Mark, is the small problem up high a new development?
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Postby radeck » Mon Oct 12, 2009 7:32 pm

Thank you for the update. You said that the difference in the angiogram before and after stenting was striking. Can you elaborate on this?
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Postby CureIous » Mon Oct 12, 2009 11:10 pm

Rokkit wrote:Hey Mark, is the small problem up high a new development?


Yes it is, but there are no collaterals, and it's a question of if it has any impact at all. I specifically asked if it was there before, answer was no. I'll post up some pics of it later on and you'll see too. It's in the "ever so slight" department. So we are adopting a wait and see just because fixing it may be negligible in impact, if at all. It was nothing like the stented areas before, not even close....

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 CureIous » Mon Oct 12, 2009 11:48 pm

radeck wrote:Thank you for the update. You said that the difference in the angiogram before and after stenting was striking. Can you elaborate on this?
Good question. I of course had a long response lost hitherto to the misclick gods.

Anyways, the angio shots are from the procedure, and are a pretty tight zoomed in xray taken on the table. Think of MRI as the general indication, and the angio the final word. Since you remain stationary during the procedure, there's a before the stent shot, then an after stent shot. It's not some small vein looking deal in the middle, it's nice and big, with the wire going through the center. That's the wire the stent takes a joy ride on before reaching it's destination. The area of stenosis on the before shot, was very pronounced. The same exact shot post-stent, well if that don't make a believer out of ya nothing will. Nothing short of WOW.

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 » Tue Oct 13, 2009 5:42 am

Mark
Gee, wish I had all kinds of good stuff to report but that's already been done!


You did report all kinds of good stuff - NO MORE INTERVENTION! -- good for you. Have a safe trip home.

Sharon
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Postby radeck » Tue Oct 13, 2009 8:53 am

This small iffy area up high you describe makes me contemplate for a bit...even if it looks like it won't be a problem...just what caused this to come into existence after the fact, i.e. it is definitely not congenital and probably came on due to some changes in your system induced by the first intervention. Changed CSF pressure? Internal venous blood pressure changes? Seems like your body has settled down and is holding it up though, maybe the whole area needs to settle into a new state of equilibrium given the drastic overall fluid changes made possible by the intervention...maybe it'll just go back to completely normal by the time you have your next appointment...just thinking out loud here.
Last edited by radeck on Sat Dec 19, 2009 2:05 pm, edited 1 time in total.
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Postby CureIous » Tue Oct 13, 2009 9:22 am

radeck wrote:
CureIous wrote:The area of stenosis on the before shot, was very pronounced. The same exact shot post-stent, well if that don't make a believer out of ya nothing will. Nothing short of WOW.

Mark.


I take it you mean it looks healthy on the after shot, i.e. the width of the vein is as it should be, and one sees the stent holding it up. Fantastic!

It's so good to hear that you didn't require repeat intervention. Literally makes my day!

This small iffy area up high you describe makes me contemplate for a bit...even if it looks like it won't be a problem...just what caused this to come into existence after the fact, i.e. it is definitely not congenital and probably came on due to some changes in your system induced by the first intervention. Changed CSF pressure? Internal venous blood pressure changes? Seems like your body has settled down and is holding it up though, maybe the whole area needs to settle into a new state of equilibrium given the drastic overall fluid changes made possible by the intervention...maybe it'll just go back to completely normal by the time you have your next appointment...just thinking out loud here.


Think away! I'll post up some sexy snapshots when I get home tonight. Hey I get excited at MRI's what can I say? He didn't seem particularly concerned about it, left it on the table, take it or leave it. I'll post the pics for the panel and let them decide.... ;)

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 radeck » Tue Oct 13, 2009 9:24 am

Awesome, I'll make sure to look at those sexy venography neck shots over candlelight :-) Hey, make sure you drive safely. This downpour is pretty rough!
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Postby CureIous » Tue Oct 13, 2009 10:01 pm

radeck wrote:Awesome, I'll make sure to look at those sexy venography neck shots over candlelight :-) Hey, make sure you drive safely. This downpour is pretty rough!


THAT, was one of the scariest hairiest rides I've been on in a long time. Phew! Very glad to be home safe and sound. The drive out of Palo Alto was gusting up to 60 mph, wrecks left and right+downpours, then the I-5 corridor was 180 miles of blinding dust storms and crazy people, then the Grapevine was torrential at the top and wrecks left and right then Calabasas was about the same. Oh and I drove it all myself this time! Weeee! lol. Not fun at all. Guess when you haven't done 400 miles of leftover hurricane you tend to be a wee bit out of practice. Found a great cafe in Kettleman City and kicked it there for awhile, had some great food and watched the power go off 3 times from all the winds. Talk about dustbowl.

So yeah, we are glad to be home, I'm D-O-N-E with Palo Alto for the foreseeable future. Oh there's a great spot we hit right across from Stanford on El Camino in the big shopping center where CVS and all that is, called Queen Calafia's. Bout the same price for a burger and fries as Coco's and 10x as good. They got lots of veggie stuff too. Got to talk to the hostess for a bit, she has some regulars with MS that come in, I'm like, "hey he's right THERE!" haha. She took down our site to pass on to them, hopefully they'll check it out. As always, great to see Alex though never long enough, Angela had already left though, and we spent most the consult with Dr. D. humming and hawing over whether to balloon that one spot, which will get up for your perusal tomorrow. It's not much to look at anyways. I really thought the stents would light up on there with a bit more definition, even though they aren't magnetic metal, but they basically glow is all and are hard to locate precisely. I'll have to do some more comparison with the 1st MRI to get a better bead. After all, that's what it's all about! Stents and stuff!

So scratch off Cerebral Venous stenting off my list of things to do before the big 4-0 next month lol...

I'll catch up with the survey stuff too. Hey I thought the collaterals would dry up and the body would eventually absorb but they don't! Interesting. They are so NOT the path of least resistance anymore so hey, we have MORE flow than ever now!

Was also happy to find out I wasn't the only one with the weird sinus stuff happening either, but that seemed to be a phase and is now non-existant, right ear doesn't plug up anymore. Like everything else, give it time to adjust and for the body to adapt to a new set of operating guidelines!

Dr. D. was telling me about the downhill skier guy from Italy or something? That one of us here?

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 cheerleader » Tue Oct 13, 2009 10:09 pm

Glad you're home safe and sound, Mark...it's been pouring all day...crazy weather! You know, Jeff's thickening in his stent was really minor, but Dr. D wanted to balloon it and did- and I'll bet your little area must be pretty small if he's OK to leave it...he's a perfectionist, so I'm sure it's fine and won't affect your new flow.

Just get on with life, enjoy your family. Keep moving, eat healthy, embrace every moment, be glad you're over this part. Get some sleep. Tomorrow's a brand new day :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Tue Oct 13, 2009 10:18 pm

cheerleader wrote:Glad you're home safe and sound, Mark...it's been pouring all day...crazy weather! You know, Jeff's thickening in his stent was really minor, but Dr. D wanted to balloon it and did- and I'll bet your little area must be pretty small if he's OK to leave it...he's a perfectionist, so I'm sure it's fine and won't affect your new flow.

Just get on with life, enjoy your family. Keep moving, eat healthy, embrace every moment, be glad you're over this part. Get some sleep. Tomorrow's a brand new day :)
cheer


Thanks Cheer! I had a good look at area in question right now, and it's really nothing to stress about at all. Looks almost mechanically related to the vertebrae too, very interesting. VERY glad to be over this part, just to be done with it, certainly wasn't unbearable! The drive was a good test though, all that high stress stuff for extended periods and did just fine, would have been a basket case of brain fog trying that last year for sure!

:) 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 Loobie » Wed Oct 14, 2009 4:57 am

Mark,

Could you elaborate on the sinus stuff a little bit? I've been having some really odd sensations of fullness and pressure in my sinuses that comes and goes; with and without congestion and I'm not sick. I'd love to hear about it very much. Either summarize for me or tell me where it is because I just have completely missed that part. I've also felt some fleeting heart fluttering type of stuff that feels just like when the cathether gets around your heart. I'm very curious about this as I think I've experienced it and would love to hear what it's about, or supposedly about.
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Postby Needled » Wed Oct 14, 2009 5:28 am

Mark, Glad to hear your back home and everything went well. Sounds like a terrible ride back, but it's all done and now you can relax and enjoy.
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