radeck's Stanford experience

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

radeck's Stanford experience

Postby radeck » Fri Oct 16, 2009 7:51 am

I had an MRV Wed night and have have an appointment with Dr. Dake Monday morning (hey Rhonda and Rose, hope to run into you...).

Not much informative to say at this point, except that the technician doing the MRA said afterwards that I breathed really regularly and that made the images come out crisp. I wasn't aware that this mattered, so y'all might want to practice some deep breathing before the next scan. I asked Greg if he saw anything interesting, and he said he wasn't allowed to tell me even if he saw something and knew what it meant. I wasn't able to check out a CD because the hospital was closed, so couldn't take a peek myself.
Last edited by radeck on Fri Jan 22, 2010 12:12 pm, edited 1 time in total.
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Postby mrhodes40 » Fri Oct 16, 2009 8:06 am

YAY!! you are on your way Rad! My guess is that you wil discover something is in there to treat, it seems to be going that way... :wink:
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 Sawdoggie » Fri Oct 16, 2009 9:46 am

I have sent everything in to Stanford and have talked with Dr. Dake. I'm just waiting on hearing back from Alex about hopefully scheduling a visit. Travelling out there and not finding anything is my biggest fear. As I have said half jokingly to my wife, this is the only group in the world that hopes for blocked jugs!
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Postby Jamie » Fri Oct 16, 2009 10:00 am

The only people with ambiguity so far have been those who's MS diagnose has been ambiguous too as far as I am aware!

Good luck I'm hoping due to the similar nature of your MS that you will have the results Mel, Jeff and others have had!
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Postby mormiles » Fri Oct 16, 2009 10:07 am

Hey rad, We all like to think of ourselves as exceptional, but that's stinkin' thinkin' in this case. I'll admit I had the same fears for Steve, but I talked myself out of them by recalling that almost every MS patient imaged did have the venous anomalies and were treatable.

I'll be praying for you to be very un-special. Try to relax and have a restful weekend. God bless you,
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Loobie » Fri Oct 16, 2009 10:41 am

Good luck Rad! They'll be there. I don't think there's been one of us that didn't feel that way.
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Postby Jamie » Fri Oct 16, 2009 10:47 am

Lew - ahem!
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Postby Loobie » Fri Oct 16, 2009 11:01 am

I talked AT LENGTH to Mary last nite and got completely wrapped up the in Cincinnati/USF football game and fell asleep! I plan on doing it after PT :oops:
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Postby cheerleader » Fri Oct 16, 2009 11:20 am

Hey radeck...
Congrats on the good MRV pics, and getting to see the doc on Monday. It's nice you live close enough you could split up the visit- although this weekend will drag, I'm sure. Make sure to have some fun and keep us posted on Monday.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Arcee » Fri Oct 16, 2009 12:05 pm

Radeck, best of luck distracting yourself this weekend. The anticipation isn't easy, and the knowing will feel good. Here's hoping for an unambiguous occlusion :wink:
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
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Postby Sharon » Fri Oct 16, 2009 1:24 pm

Radek - I was surprised to see you had your test on Wednesday and consult on Monday ---- then realized you are a resident of N. California.
Glad the images are "crisp" - you are correct -- the breathing makes a difference in the quality of the image.
Have a nice weekend - hopefully, the weather is nice so you can get out and enjoy and not be thinking about juggulars :wink: Keep us posted on Monday

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Postby Rose2 » Fri Oct 16, 2009 4:22 pm

Good Radek!!
1/2 way there! Hope to see you, too.
Sounds like you smiled real nice for all your pictures!
Did they tell you to breathe smoothly before the MRI for better results, or did she just happen to mention it when you were all done? Thanks for the tip.
How long were you in Testing all together? Ballpark?
Good Luck Monday.
I am in afternoon.
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Postby radeck » Fri Oct 16, 2009 6:40 pm

Rose, Greg (the technician doing the scans) didn't ask me to breath in any particular way but he told me afterward that I was breathing very regularly, and when I asked how he could tell he said because the scans came out very clear. I don't know why this is the case. I'm just guessing it's because when you breathe regularly you usually also breathe more slowly, so there's less jitter?

He said it would take an hour and a half but I think it was 15 minutes more than that.

Thank you all for the encouraging words! I'm coping with the wait and am really happy that I can get the testing. Whatever the outcome I'll know more about myself afterwards.
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Thanks

Postby Rose2 » Fri Oct 16, 2009 6:46 pm

Thanks Radec,
That will give me something to keep my mind on, and a job to do, keeping my breathing regular.
You were probably more comfortable in the machine than some patients that have never been in one before. Maybe someone who is unfamiliar or uncomfortable with it breathes differently, or at least not as relaxed.

I have been in enough of them, it feels like my own safe cocoon, so I hope I get good crisp scans.
Congrats on a job well done!
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Pins and needles

Postby mormiles » Mon Oct 19, 2009 9:39 am

radeck, Knowing your appointment with Dr. Dake is THIS MORNING, just letting you know our prayers are with you. Can't wait to hear from you...today hopefully.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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