At Stanford

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

At Stanford

Postby mrhodes40 » Sun May 17, 2009 5:05 pm

I arrived after a lovely trip down the coast watching the redwoods etc. IT was nice, it is also very HOT, like 95.. You guys all know what I mean, I wlked into my hotel with the greatst difficulty and my rollator. step by painful nearly tripping step. I was glad to get to our room without breaking my aram again!

We're staying at the Sheraton right across the street. Disabled rooms on the top floor and pretty nice, though like most able bodied people they assume that a disabled person has enough mobility to get from a car to a room that is--I swear--1/4 mile all told from disabled parking to door....labrinthine halls acres to walk to get to the oh so pretty elevator. Ugh. If I used a electric chair it would not have been a deal but since I sort-a kinda walk, it was tough. I understand tomorow we will be all over the medical campus too.

We did room service a "California burger" (oh yum, will do it again surely)to share so we can get our strength up for a trip to the hospital later for recon...we'll probably go to trader joes, which is right next door for some organic fruit etc for the room while we are out.

Tomorrow we will know what the scoop is, finally. Today we tried not to get too excited, reminding one another it was possible it would not show a repairable thing---or maybe I'd be different than the hundreds of MSers Zamboni already has evaluated and seen stenosis in.

I'll check back in later.
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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thinking of u

Postby wobbly » Sun May 17, 2009 5:11 pm

all i can say is U GO GIRL/ STAY STRONG :P :P :P
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Postby peekaboo » Sun May 17, 2009 5:28 pm

good to hear from you and glad the 2 of you arrived safely.

too sad/ugly that you had such a herculean task to get to you disability room.

will be thinking of you

H
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Postby mrhodes40 » Sun May 17, 2009 5:31 pm

Thanks my friends! I thought earlier to day to myself stay strong and it made me feel stronger...

andyep why so hard to get to a disabled room? is it sad, but the room is quiet and good.
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 Artifishual » Sun May 17, 2009 5:37 pm

fingers and toes crossed! take care!
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Postby cheerleader » Sun May 17, 2009 7:00 pm

Thoughts and prayers sent to you tonight, Marie. Restful sleep and sweet dreams...you deserve it after making that trek to your room!!!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: At Stanford

Postby NHE » Sun May 17, 2009 8:19 pm

mrhodes40 wrote:We're staying at the Sheraton right across the street. Disabled rooms on the top floor and pretty nice, though like most able bodied people they assume that a disabled person has enough mobility to get from a car to a room that is--I swear--1/4 mile all told from disabled parking to door....labrinthine halls acres to walk to get to the oh so pretty elevator. Ugh. If I used a electric chair it would not have been a deal but since I sort-a kinda walk, it was tough. I understand tomorow we will be all over the medical campus too.


Maybe a letter to their management is in order. How hard can it be to repaint some stripes and signs on the parking lot?

By the way, congratulations on being seen by Dr. Dake. I hope that you can get your plumbing cleared out so that you can experience some of the positive benefits that Jeff has obtained.

NHE
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Postby CureOrBust » Mon May 18, 2009 3:07 am

Its not often you have people wishing that a doctor will "find an abnormality", but in this case, it seems the appropriate. :)

And take some comfort, some of us may loose as much sleep as you in waiting for the results!

I hope it works or can work for you.
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Postby SarahLonglands » Mon May 18, 2009 3:47 am

Marie my friend, I'll be keeping my fingers and toes crossed for you!!
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Loobie » Mon May 18, 2009 3:55 am

Allright, now it begins for you we all hope and pray. I can't wait myself. Glad to know there's a Trader Joes right there. I'm actually going to be staying at a friend's house that's less than 2 miles from the medical center! I so hope they find what they need to find Marie.
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Postby catfreak » Mon May 18, 2009 4:50 am

Marie,

Praying for you today. May this journey be the answer to your prayers.

Please keep us posted on todays happening as we are all excited to hear what you find out.

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 Sharon » Mon May 18, 2009 5:36 am

Marie -

I think everyone is on pins and needles - I would imagine this thread is going to get many hits later on this afternoon - hope the site does not crash!! :roll:

My thoughts are with you this morning as you ready yourself for the day.

Sharon
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Postby mrhodes40 » Mon May 18, 2009 7:33 am

How hard can it be to repaint some stripes and signs on the parking lot?


I am with you but I was unclear--the disabled is clos to the door but the hotel walking inside is the chore, the leevators are far far from the door that let you in then the disabled room very far from the elevators on he top floor, so all that 1/4 mile of walking is inside!!

We may request groud floor room near the entrance, t his will be especially good if I have surgery tomorrow cause I do nto see right now how I would "walk" to the room we are in now with grogginess.

That having been said the beds are comfortable, clean, the rooms pleasant and overall it is a nice hotel. TUrnes out the "Trader Joes" is "coming soon" Dang! there goes the handy organic connectioon!

in one hour i'm in the tube
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 » Mon May 18, 2009 7:50 am

Kick ass girlfriend.
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Postby cheerleader » Mon May 18, 2009 9:47 am

Visualizing you in the tube, dear friend.
You may not get any report back until you sit in the doc's office this afternoon. Dr. Dake supervised Jeff's MRV early in the morning, but he didn't say anything until our private meeting with him hours later, when he showed us the computer images of what he saw. So, the time may drag.

Get some lunch, some rest, and let us know how you are doing. There are many, many friends with you today...we're surrounding you with love and hope.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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