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

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Postby Rose2 » Sun Sep 27, 2009 6:01 pm

Hi All.
I am new to this site. Dx RRMS 2001 with more sx than I want to write about. Permanently disabled from my career.
I am very excited to learn about CCSVI and I have all of my paperwork into Dr. Dake.
Alex said my chart is on his desk so I am anxiously waiting for a call from him.
How long did most of you guys have to wait? I know he has been out of the office or town.
I was feeling much better when I filled out my personal information to him, but now am having more, newer sx and wonder if I should fax them to Alex to add to chart or just wait for The Call.
I was diagnosed at Stanford and have a tx hx there, so maybe that will be helpful to Dr. Dake. Don't know.
Thanks, Cheer, for going to Italy and bringing back so much info.
Am I the last person on the planet to learn of this?
When did CCSVI hit the MS news?
Thank you. Rose2
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Postby cheerleader » Sun Sep 27, 2009 6:13 pm

Welcome, Rose.
Glad you're at Stanford already. Hope that helps you get a consult with Dr. Dake. We all started blabbing about CCSVI in December when one of our superb researchers, dignan, posted the Zamboni research. That's the super long thread posted at the top as a "sticky." Read thru it, and see how we all learned together. You are far from the last person on earth....most MS docs do not know about this research, and it's all very new. You can fax your new info to Alex, or wait for the call back...don't think it will matter in the long run.
The trip to Italy was fun, so no need to thank me...I'd do it again in a heartbeat :) (just for the gelato!)
I hope you get some answers and wish you well,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Sun Sep 27, 2009 6:36 pm

Hi Rose,

I think if your chart is on his desk, then you may get a call soon. I really couldn't guess as to what the lead time would be from contact to appointment. The reason I say that is that he's getting pretty busy! I don't think he was too swamped when I had this done. I was also dx'd in 2001 and have more symptoms than I want to talk about too!

Welcome to TIMS and I hope Alex calls you soon!
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Postby CureIous » Sun Sep 27, 2009 8:40 pm

Welcome to our merry band of knowledge marauders. We leave no stone unturned. (right?). It is good to have a full range of experiences for everyone to see, good, bad, ugly or otherwise.

Alex says its on his desk, it's on his desk and he WILL call you. As iterated above, the sx not so much important really, but you will fill out a before/after questionnaire doohicky. At least you know your way around there! Plenty here to read that's for sure.

Keep us posted on where you are in the process....

Grew-up-in-Richmond District-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
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Postby Jamie » Sun Sep 27, 2009 9:01 pm

Good luck!
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Postby MaggieMae » Mon Sep 28, 2009 7:55 am

My husband's file has also been on his desk. We have been waiting for a call since the beginning of September. Don't know how it works (what order he calls). Still waiting. I know Rhonda (Magoo) is waiting also.
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Postby magoo » Mon Sep 28, 2009 9:42 am

Hi!
Yes, I'm waiting too. Alex called last week and let me know when she received my MRI/history. It is now on Dr. Dake's desk. I am really bad with this waiting part. I think I'm driving my poor husband crazy! lol!
I am so hopeful and sure that this is the right thing for me, risks and all. I'm sure we will all be posting our experiences here before we know it!!!
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.
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Dr. Dake Called!!

Postby Rose2 » Tue Sep 29, 2009 6:39 pm

Hi All.
Thank you so much for replying to my post. I am grateful for the kindness.
Dr. Dake called me last night about 7:00 pm. (09/28/09) Very nice man and conversation.
He said Alex will call in a few days to set up the appointments. so it sounds like I am in the line to get checked out somewhat /anyway.
For those of you waiting, Dr. Dake apologized for taking so long, but he has been out of the office along with everything else. I can't imagine what else he must have on his plate.
BUT, he DID call so I know he will call you guys.
Happy and Hopeful!, Rose
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CurIous

Postby Rose2 » Tue Sep 29, 2009 6:48 pm

Hi CuriIous.
I was born in So. Cal and now have been Bay area since college. Lots of years.
Richmond District, huh? I absolutley love the City. It is a great, invigorating, ADA friendly place. We try to take of advantage of it as much as possible. BART and taxis make access easy.
But everyone is sure freaking out since they put a simple S curve on the Bay Bridge. They all need a week on the LA fwys and that would take care of it.! thanks, Rose
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Postby cheerleader » Tue Sep 29, 2009 7:44 pm

Good news, Rose! Glad you made contact. Jeff's from the Bay Area. We lived in the Sunset District from 87-92, when I sang with San Fran Opera. Jeff's sister was on the Bay Bridge during the '89 quake...she couldn't get to the other side (because the bridge broke) and had to walk to Treasure Island until the CHP walked folks to their cars to send them back into SF. The earthquake retrofitting was a big deal back then, and the new crack in the bridge is a big deal, too- it needs to be fixed, no matter the hassle- And you're right about LA freeways!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jay123 » Wed Sep 30, 2009 5:40 am

I was wondering what was meant by an s curve on the bridge, I could see people freaking out if a bridge all of a suddenly developed one (like a straight jug vein developing one!) since most bridges are straight!! LOL
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I HAVE MY TEST/PROCEDURE DATES!

Postby Rose2 » Wed Sep 30, 2009 9:51 am

HI ALL!
I just spoke with Alex and scheduled Nov. 10th and 11th for testing and procedure with Dr. Dake at Stanford.
Nov. 10th Radiology Testing
Nov. 11th Radiology and Prodcedure/Stents. Overnight hosp. stay.
This is as I understand it. I will have the consultation with Dr. Dake at testing appt.
OH, AND FOR THOSE WHO ARE WAITING FOR HIM TO CALL, Alex had a hard time finding appts. becuse Dr. Dake just got back from Portugal and is on his way to Toronto and is very booked. But if he is going to call you he will but she can't say when
I wish I could tell you more, but that is all I could wiggle out of her for you guys.
Just an FYI. thanks for all of your replys. greatly appreciated.
Rose
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Moved my dates

Postby Rose2 » Wed Sep 30, 2009 3:42 pm

Moved my dates to Ovt 19, 20. fyi. too excited to wait! Rose
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Re: CurIous

Postby CureIous » Wed Sep 30, 2009 4:09 pm

Rose2 wrote:Hi CuriIous.
I was born in So. Cal and now have been Bay area since college. Lots of years.
Richmond District, huh? I absolutley love the City. It is a great, invigorating, ADA friendly place. We try to take of advantage of it as much as possible. BART and taxis make access easy.
But everyone is sure freaking out since they put a simple S curve on the Bay Bridge. They all need a week on the LA fwys and that would take care of it.! thanks, Rose


Yeah I was in SF recently and noted how easy the traffic was, until I got downtown, yikes! Put me on that one-way street and kiss me goodbye! Was neat though to see how little things had changed except my old schools weren't there, but the corner markets were! With original signs!
Glad to see you managed to wrangle a few less weeks of waiting out of the thing. I don't know how Alex does all the juggling! Good luck Rose and keep us informed! I'll be up there in just 2 short weeks for my follow up, my how time flies...

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
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Postby magoo » Wed Sep 30, 2009 4:22 pm

Rose,
You and I will be there together!!! I am scheduled 10/16 and 10/19.
Two weeks.... I am so ready:) I don't know how I will live through that weekend without results, but I'll find a way. Since I am from Fremont, I will be seeing old friends and family. I hope we all get to meet:)
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.
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