Notes from CureIous' at Stanford

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

Postby magoo » Thu Sep 24, 2009 5:32 pm

We "Rhonda's" are pretty good people you know! I'm also a CA girl, so it will be extra fun for me to head back to the Bay Area!!
I certainly hope to educate my docs on the entire process! Thanks for the Coumadin info. I've learned so much here.
Be Well :)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CureIous » Wed Sep 30, 2009 8:38 pm

Just for posterity my INR is still high at 3.4 from yesterday's test. Will retest Thursday and kick it down a notch to 5mg for one day. Finished off the antiobiotic which is known to increase your INR's while on Coumadin. That was Sunday so a bit early I think to see it drop down more to a comfortable level. No worries but 3.4 doesn't exactly leave one in peak condition either.

One thing or rather a couple things I've noticed pre-post op, was I was keenly aware of beginning to lose sensitivity in my finger tips prior to going in. Like stuff that was hot didn't quite feel hot anymore. And that "rubbing the shoulder on the wall" thing when walking was getting a bit irritating since who needs a wall to walk straight or maintain balance? Everything else pretty much the same, still no heat intolerance or fatigue. Concentrating is so much easier now, remembering whether I took my meds or not is my magic marker of progress. If I can't remember, I'm back where I was in the short term memory dept. So far so good I can SEE myself in the immediate past doing stuff and remembering specific things. It's great to be able to tilt the head back without the nausea/dizziness thing hitting me. Brainfog still gone, no trudging thru the day on autopilot, feeling like I have to get that one task done and nothing else before the tank runs dry.

Wouldn't change a thing at this point.

Mark.


EDIT: I'm also very aware that there is a patients log thread and such, not trying to go rogue here or anything, but since I won't have any uber-dramatic results pro/con to report anyways, being just an RRMS patient and all. Main reason why I would like to keep this thread going, is because Holly started it, and it means a lot to me on a personal level. She was such a kind person to everyone and such a dear one that I want to honor that and not forget her.
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 Oct 03, 2009 12:45 pm

Phew, INR popped up to 3.6 from the Thursday test. That was after lowering down to 5mg for one day.
So enough "adjusting" I dumped the meds for one night and already feel better. Will resume the coumadin today. Only 1-2 more tests then off to Stanford! Last time we strolled in the door, this time I propose victory laps, if they don't call security first lol.
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 » Wed Oct 07, 2009 11:15 am

Well I guess 7.5/day of coumadin is enough to drag me down to 1.4 on my INR lol. Been especially tired since doing that. Not sure if it's fatigue, as my impetus to do things is there, unlike fatigue days, just tired is all. Maybe it's because I so despise napping.
Since my follow up is on Monday there's no sense in doing another INR so will just pop it back up to 10/day in the interim and roll the dice. My thinking is that there's a certain lag here, it takes the body a few days to adjust either up or down from thinner to thicker or vice versa. Am feeling better today than the past few days. All this short term stuff up and down bad/good is just that, short term, so not getting overly excited either way.

My friend volunteered most graciously to accompany me up there again, another gracious friend is paying for the room for us. I even wrote Dr. D to see if it was 50/50 coin flip, or leaning towards the "no further intervention needed" side, so as not to drag said friend up to Palo Alto for nothing. He (of course) iterated to err on the side of caution. Well, we have fun traveling together so it's going to be great! My friend said," You don't need to ask, I've already made the decision I am coming". It's tough to ask someone to impart days worth of free time so that was a relief.
And the schedule is soooo much easier, overnight Sunday, Monday blood draw at leisure, afternoon MRI/MRV, consult afterwards, marching band parade at 4:30, culminating with the papal blessing at 5ish. Like anything else, it's easy when you know what you're doing!

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 magoo » Wed Oct 07, 2009 11:52 am

I hope all goes well :) Have a fun trip with your friend!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Loobie » Wed Oct 07, 2009 11:55 am

My 3rd trip will be like that. I pretty much knew I was getting surgery the second time, but it was still much smoother than the first time. Third time will be like old home week! I'm going by myself this time just to prove I can!
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Postby Sharon » Wed Oct 07, 2009 12:24 pm

Hey, Mark!

Say Hi to Don for me -- he and I had a few telephone conversations when you and I were at Stanford in August. Glad he is travelling with you and hope that you will not need further intervention.

Sharon
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Postby CureIous » Wed Oct 07, 2009 12:39 pm

Sharon wrote:Hey, Mark!

Say Hi to Don for me -- he and I had a few telephone conversations when you and I were at Stanford in August. Glad he is travelling with you and hope that you will not need further intervention.

Sharon
Will do! I still have your # in my cel so okay if we call if worse comes to worse? Just for board reporting etc. Otherwise I'll just use the hotel puter if they have one.... 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 Oct 07, 2009 12:41 pm

Yes, call me ... I will PM with my home # also. And, there is not going to be a worse case scenario - okay?

Sharon
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Postby CureIous » Wed Oct 07, 2009 12:43 pm

Sharon wrote:Yes, call me ... I will PM with my home # also. And, there is not going to be a worse case scenario - okay?

Sharon
Sho nuff!
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 Jamie » Wed Oct 07, 2009 4:34 pm

Trip two was such an anticlimax!

MRI then 10 mins with Dake and we were off!

Good obviously, but we'd built it up a lot.

Good luck, hope no further surgery!
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Postby CureIous » Wed Oct 07, 2009 5:14 pm

Jamie wrote:Trip two was such an anticlimax!

MRI then 10 mins with Dake and we were off!

Good obviously, but we'd built it up a lot.

Good luck, hope no further surgery!


So bland, so ordinary, so, I don't know, refreshingly normal.

I know I know, "Define normal"..... So you're saying no parade, no sirens blaring, no horns, trumpets, or my favorite, BAGPIPES? Just a handshake and hasta la vista? Sigh.

I'll take it. Take it, take it, take it.

M.
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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Good Job!

Postby Rose2 » Wed Oct 07, 2009 7:46 pm

Mark,
Thank you very much for sharing with all of us. I am axiously reading and wating. Oct 19/20 for me and I am thrilled you were able to make such a long drive with what appears to be great gusto!
Please remember to rest! Congrats! Rose
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Postby CureIous » Sun Oct 11, 2009 7:45 pm

Hi, had a very pleasant ride up and are situated. Nothing major to report, we're actually heading out to go coffee shop exploring in Redwood City and to paint the town haha. Hey the queen suite at Super8 is nice with 2 rooms and really close and cheap, way happier than the 5 miles to the comfort inn. Anyways, we won't have a problem updating tomorrow with whatever becomes of the follow up appt.

Take care all.

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 6:37 pm

Howdy all, just completed my follow up MRI, hot footed over to the film library to order a copy, then the consult with Dr. D. Mostly looks good, was awesome to see the angiogram shot from before after the stenting=WOW. Talk about dramatic. There's one spot higher up on the right which is iffy, but only an angioplasty is indicated but it is a shoulder shrugger so we decided to nix the idea for the interim. No parade, but a BIG storm coming in so that much needed rain is a + for us Californians. Gee, wish I had all kinds of good stuff to report but that's already been done! He said there's been a flood of people coming in. Gee, how did that happen? ;)

Okeedokee folks, well, off to paint the town red and get into trouble.

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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