Getting Ready for Stanford

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

Postby Arcee » Tue Jul 21, 2009 7:03 am

Some tips and comments and observations from my experience at Stanford. Hope it helps in the prep for others. In no particular order:

- I thought the machine for the MRV was much louder at Stanford than the one I am used to at home

- the time designated for surgery is actually 2 hrs before the actual surgery begins.

- I had great results from taking a probiotic. My understanding is that antibiotics can cause stomach/digestive problems, as can the pain killers, and since they are pumping us up with antibiotics, taking a probiotic can be real helpful.

- they pump you up with liquids through an IV all night long in the hospital, so you pee all night long. I had the impression from the morning nurse that the qty of liquid they gave me was really high and she cut it in half. So if you are up every hour, you may want to ask them to check it.

- if you want to have your phone with you in the recovery room, don't disclose it is a valuable as then they have to send it to the safe. Instead, leave it in the eye glass case they give you in the bag to keep your clothes.

- I tried to eat whenever I could after the surgery, lots of saltines, and that seemed to help.

- And I packed for the trip with special attention to things that would provide comfort. For example, I packed my iPod with music and podcasts that I would enjoy or find soothing, and I listened to it all night long in the hospital. I also brought lots of those bar things to eat so I could have something as soon as it was ok after the fast, as soon as I realized that I didn't like a hospital meal, etc.

Random thoughts, but I hope they help!
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Postby catfreak » Mon Aug 03, 2009 7:38 pm

Just bumping this for myself.

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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 Sharon » Thu Oct 01, 2009 8:41 am

Bumping this thread - we have a few "newbies" on site who are getting ready to go to Stanford.

Sharon
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Heard from Alex!

Postby rettahb » Mon Oct 05, 2009 11:07 am

Now I got to get everything together......... Including stuff from my neurologist I hope he is quick and helpful.

I'm concerned because they ask for a recent MRi. I haven't had one in over 3 years.

gosh! I so want this to happen!
~retta
Never believe that a few caring people can't change the world. For, indeed, that's all who ever have.
Margaret Mead
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Postby Sharon » Mon Oct 05, 2009 11:30 am

Retta - send Dake what you have. A 3 yr old MRI is better than nothing. Can you get the CD of the images?

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Dr. Dake

Postby rettahb » Mon Oct 05, 2009 12:01 pm

I've got it all lined up! just got off the phone. turns out it's been five years. they are older then digitized so it will take some time to digitize them.

I also talked to my neurologist who was supportive of me having the procedure but does not believe it has anything to do with MS..... he is not interested in reading the study. This really bums me out. How can he not acknowledge that 100% of MS patients have CCVSI that that isn't possibly relevant?

So I'm doing it with out him.
Never believe that a few caring people can't change the world. For, indeed, that's all who ever have.
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Postby Sharon » Mon Oct 05, 2009 12:05 pm

I also talked to my neurologist who was supportive of me having the procedure but does not believe it has anything to do with MS..... he is not interested in reading the study.


Ah, yes the uninterested neurologist :x Many on the forum have had the same reaction from the neuros.
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Postby Shannon » Tue Oct 06, 2009 9:08 am

Thank you all for posting your experiences here on this site. I am in line as a possible candidate here and the narrative of personal experiences is invaluable to me. Also, I am scheduled to see my neuro at the University of Michigan Medical Center (a huge research hospital) on Oct. 16th, so I am planning on giving him the whole business and even encouraging him to pass on the info about the MRI website where they want radiologists to just test 10 people and record the findings. Surely, this facility would be interested in this, right? I'm not really going to hold my breath. :roll:
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Postby cheerleader » Tue Oct 06, 2009 9:18 am

Shannon-
Skip the middle man...
Send the MS-MRI website to the head of radiology at U of M TODAY. Tell them you are an MS patient there, and would be happy to be one of the 10 patients tested. Believe me, they will be intrigued (once they see that 3D MRV image of double jugs)
cheer

http://ms-mri.com/
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CRHInv » Mon Oct 26, 2009 8:38 am

Bump!
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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Dr. Dake

Postby rettahb » Mon Oct 26, 2009 9:25 am

Dr. Dake called last night. I talked for 30 minutes to him. Next I wait on Alex calling to schedule a time. :-) .....scared but excited.
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Postby Sharon » Mon Oct 26, 2009 9:33 am

Retta - you are on your way - congratulations! Scared :( and excited :) - good emotions to be having right now.
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Postby Loobie » Mon Oct 26, 2009 9:41 am

You go girl!
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Postby CRHInv » Wed Nov 18, 2009 9:52 am

Okay! I wanted to add some ideas of things to take with you that people sent to me and I thought were really helpful. Some of them may have been mentioned, but I don't think it hurts to say it again...

1. Any medications, even OTC, especially if you don't want the generics that Stanford uses.
2. A bottle of Extra Strenght Tylenol.
3. A hot water bottle, but you need to get clearance to use this. There is some controversy about this!
4. Button down shirts and pj's. If you get the arm weakness, you might not be able to get into something you need to pull over your head.
5. A sleep mask incase you have light sensitivity.
6. A neck pillow to support your head, especially on the trip home.

Okay! That's all I can think of right now, I will edit if I remember anything else.
[/b]
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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Postby Sharon » Wed Nov 18, 2009 10:56 am

Thanks Beth -- good ideas which are very helpful to those thinking about going to Stanford or those that are scheduled.

Sharon
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