Go for liftoff. Watchout Palo Alto here I come...

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

Go for liftoff. Watchout Palo Alto here I come...

Postby CureIous » Fri Jul 31, 2009 9:24 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:10 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 catfreak » Fri Jul 31, 2009 9:30 pm

Cureious,

Best of luck on your adventure in Palo Alto. Please keep us posted around every turn.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Loobie » Sat Aug 01, 2009 5:04 am

If your family is going make sure they assign an 'advance scout'. My mom while I was in one appointment, would walk the way to the other one. It's a big place and if you've never been there, it can be a little confusing. Just a heads up because it was so nice to come out of the MRV and have her just push me to the next place like she worked there. It de stresses the whole situation. Good luck! Make sure you tell your hospital nurses that take care of you post op to have some Zofram on hand. Maybe Dr. Greg would be the one to talk to about that (I don't know his last name) but if the morphine and percocet make you nauseous, that stuff was a lifesaver, but only after I asked for it. That stuff made me nauseous as hell and that was the ticket (as is marijuana, and I've told Dake my feelings on that and how well it works for that post op pain).

Also as Holly pointed out to me, if you have any bladder issues whatsoever, get a foley cath. That saved me. I would have been up out of bed no less than a dozen times that night as much fluids as they push. And I was in no shape to do so as I got the major "opiate rush" upon standing and would have probably fell multiple times if I had to bathroom it all night. I'll tell you, I've read up on percocet and opium in my wifes "Davis's Drug guide" and they should have been more cognizant about ambulation after morphine and percocet. There are concerns taking anyone from lying down to upright after those two, let alone someone with balance issues.
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Postby mrhodes40 » Sat Aug 01, 2009 6:55 am

I want to ditto what Lew wrote,

1 Stanford is huge busy and confusiung the scout idea is good. And he did not make special point of it, but a wheelchair is the way to get around unless you walk normally. If you use a cane or anything, it's just too much. I walked with my rollator to the MRI MRV but I stopped often and gazed at the halls that just seemed to get longer..... thinking I am going to fall. I swallowed my pride and just got the orderly to push me.

2. The catheter is vital for exactly the reasons Lew mentioned if you have balance issues and bladder problems. We have to remember that though these people work with diasabled persons sometimes, they really don't think about stuff like how would an off balance person tolerate an opiate and then walk to the bathroom all night when I put an IV in?

We have to teach people about our needs, they don't know what they are.
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 Loobie » Sat Aug 01, 2009 8:41 am

mrhodes40 wrote:We have to teach people about our needs, they don't know what they are.


That right there sums it all up. The surgical team was like "you WANT a foley?" they just didn't get that. And to me it was like "duh, of course!". So Marie makes a very good point. You can't assume they've ever worked with MS patients. After all, I can't think of anything that I've ever read where surgery was even something you considered for MS. So anything that you take for granted as part of your routine, tell the pre op nurse who will be asking you a bunch of health history questions. I can't stress that enough, you will be glad you did if you have anything like that to deal with.
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Postby cheerleader » Sat Aug 01, 2009 9:13 am

Cureious...
traveling mercies to you, Mark. Make sure to read this thread, it has some terrific advice from the folks who have gone before:
(Note to the gang...maybe this thread needs to have a section on post op care? The blood thinning regimen? Pain management? Good to have it in one place since info is flying on this forum.)

Getting Ready for Stanford

Make sure you have all of your questions and concerns written down, so you don't forget anything. It all moves VERY quickly once you're in there, and it's easy to forget something.

Appreciate the kudos....but I've had it really easy. All I do is get on the computer. Jeff, Marie, Sharon, Mark, Holly, Alex, Lew, Mel, Daisy, Randi, Island Girl...all these brave people got on the OR table and trusted enough to put their health on the line for research advancement and for other people they'll never know. They're my heros.

Please keep us posted, Mark. Looking forward to news from Stanford!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Sat Aug 01, 2009 10:15 am

Can't wait to hear from you Mark...

I am going to type his phonecalls to me so I can get info out asap.
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Postby Jamie » Sat Aug 01, 2009 11:00 am

Superb.

Good oats fella.
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Postby Needled » Sat Aug 01, 2009 2:17 pm

Best of luck CureIous. We’ll be with you in spirit.
And yet another awesome idea -- Peekaboo said:
I am going to type his phonecalls to me so I can get info out asap.
You guyses come up with everything!!
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Postby CureIous » Sat Aug 01, 2009 3:01 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:10 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 » Sat Aug 01, 2009 4:13 pm

Hi Mark!

I will be at Stanford on Wednesday for my follow-up. PM me with your cell phone # - maybe I can stop by your hospital room Wednesday in the morning before you are released.

I ditto the suggestion of familiarizing yourself with the building layout. Is your MRI in the main hospital or at Blake Wilbur clinic? I was at Blake Wilbur and was glad that we had spent the time tracing the route back to the hospital and then to the Ultrasound. As a reminder, there is valet parking at $8/day and there is a golf cart shuttle that will take you between buildings.

LadyStewart will be up next with testing on Tuesday and procedure on Wednesday. Hope that I can meet you both.

Take care - we will all be waiting to hear from you.
Sharon
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Postby CureIous » Sat Aug 01, 2009 8:06 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:09 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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Re: Go for liftoff. Watchout Palo Alto here I come...

Postby ErikaSlovakia » Sun Aug 02, 2009 4:08 am

Good luck Cureious!
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Postby CureIous » Sun Aug 02, 2009 7:04 am

:)
Last edited by CureIous on Sat Oct 03, 2009 3:09 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 CureIous » Sun Aug 02, 2009 5:37 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:09 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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