Magoo

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

Magoo

Postby Rose2 » Wed Sep 30, 2009 4:32 pm

Wow! We do have close dates. Is your Oct.19 procedure am or pm?
I don't have my times yet. except procedure is Oct. 20, PM.

Glad you have friends and family in the area.

We receive the test results and consultation on the same day as Radiology/Testing, is that correct? Otherwise, there is no procedure indicated?
Still learning, Rose
User avatar
Rose2
Family Elder
 
Posts: 274
Joined: Sat Sep 12, 2009 3:00 pm
Location: SF area

Advertisement

Postby magoo » Wed Sep 30, 2009 5:53 pm

Rose,
From what I understand, in my case, I will not get any results on the day of testing, which will be Friday, the 16th. Dr. Dake will be out of the country on that day so I will have my consult with results Monday the 19th...then surgery. Believe me, I asked if they would give me any indication on Friday, Alex said no. TORTURE! Also, I don't have my times yet. Alex will send them soon.
Honestly, I am just thrilled to be going. I just booked my flight!!!
We can begin the countdown together!!!!
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.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

YES!

Postby Rose2 » Wed Sep 30, 2009 6:21 pm

yes Magoo, we have a date so will start the countdown!!
As I spoke with Alex today, the calendar changed in front of her eyes!
Dr. Dake was on a flight to Toronto and changed the open dates of oct 22/23 to 'Las Vegas''. I told her I would follow him there, but I didn't get an appt. for that! :lol:

She has 4 calendars to juggle. I told her it was going to be great fun for her to deal with us MSers as i tried to write down what she was saying but it wasn't coming out of my hand the way my brain was saying it.
She just laughed. very nice and patient lady.

Are you staying in Fremont? Have you been to Stanford before? I think it can be kinda tricky since there are so many trees and no easy point of reference. Take the Dumbarton Bridge. Left on University. Stay on it all thru town unless you know the shortcuts.
It takes you onto the university grounds then follow your map from there.
Let me know if I can help.

How long do you stay nearby before you fly home?? How do you do the first and following check ups or does your own neuro do it?
thanks, Rose!
User avatar
Rose2
Family Elder
 
Posts: 274
Joined: Sat Sep 12, 2009 3:00 pm
Location: SF area

Postby CureIous » Wed Sep 30, 2009 6:45 pm

magoo wrote:Rose,
From what I understand, in my case, I will not get any results on the day of testing, which will be Friday, the 16th. Dr. Dake will be out of the country on that day so I will have my consult with results Monday the 19th...then surgery. Believe me, I asked if they would give me any indication on Friday, Alex said no. TORTURE! Also, I don't have my times yet. Alex will send them soon.
Honestly, I am just thrilled to be going. I just booked my flight!!!
We can begin the countdown together!!!!
Be well:)


Geeze that's a full blown weekend of torture! However, me being the persistent "dumb question=one that's not asked" kind of guy, I wouldn't be averse to hitting up the radiology tech on the way out. Chit chat chit chat "thanks a lot for all your help" yadda yadda, "by the way did you see anything interesting on the MRI?". If you do it in such a way that it's not asking for dx specifically, since he's looked at so many of us already he might be able to at least give you a hint if you are "standard issue". I think it would be different if they were dxing for brain cancer or something innoculous then ran across something bad, which happens. In this case however you just need something along the lines of a hypothetical question thats not pinning him down to a straight answer.

Definitely worth a shot. Maybe plead your "waiting all weekend" case as a last resort... I know when I had a thoracic MRI, looking for lesions, she ran across a possible spinal cord compression from a thoracic disk. She wasn't "supposed" to discuss it with me, but me being the "not freaking out at every little thing" kind of person, she had no problem showing it to me. One CT myelogram and a neurosurgeon's consult later I was cleared of any cord involvement. Phew! One place you don't want an operation on is your thoracic spine.

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
User avatar
CureIous
Family Elder
 
Posts: 1202
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby magoo » Thu Oct 01, 2009 6:40 am

My head is spinning! I need to make some lists, otherwise I'll be getting lost before I get tot the airport!
I'm not staying in Fremont. Most of my friends and family moved. I'll be staying in a hotel the days before my appts. Then I'll recover at my Mom's (in Walnut Grove, out on the Delta) for 4 days before flying home to my family. I have never been away from them for so long. I'm going to skype them all the time! I think it's better if my husband stays home and keeps the routine normal for Jake and Josh:) Although I will miss his shoulder:( And all of their hugs:(
As far as the TORTURE goes...I am going to try to wrangle some info out of them! I will have friends to pass the time with, which is great, but I have to know! Wish me luck with that one. And yes, I am already nervous that I may be the one without any stenosis or blockage 8O
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.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users