you all are amazing -- can I join you?

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

you all are amazing -- can I join you?

Postby bluesky63 » Sun Sep 20, 2009 8:23 pm

I just found this info last week, and the first night I could not SLEEP I was so excited. I have now tried to absorb everything you all have written on this forum. :-)

I've even dreamed about it. Last night I dreamed Janet Leigh was playing me in a movie about all this, and Dr. Dake was asking her what her transferrin levels were because that was a critical piece of the puzzle.


Thank you to everyone here for such a great job pulling together all this info, and especially thank you to everyone who has been a pioneer and written in so much detail!
Last edited by bluesky63 on Sun Mar 13, 2011 9:35 am, edited 2 times in total.
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Re: you all are amazing -- can I join you?

Postby CureIous » Sun Sep 20, 2009 8:44 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:39 pm, edited 1 time in total.
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 whyRwehere » Mon Sep 21, 2009 2:23 am

I couldn't sleep the first night after reading about ccsvi, either! That was last Spring, and I am still very excited about it.
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Postby Loobie » Mon Sep 21, 2009 5:47 am

I have started a blog chronicalling my personal experience with it all. Click on the link in my signature line and start at the beginning. It's from a more "what it's doing to me" approach. There is SO much info. on here, and frankly SO much of it is over my head! So I tried to boil some of it down in my blog so I wouldn't "scare the straights" :lol: . You are welcome to ask any question on here that you would have. There are quite a few of the lead info. junkies on here that can either answer or provide a link to where it may have already been talked about.
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Postby Jamie » Mon Sep 21, 2009 6:02 am

I didn't sleep very well until Dr.Dake returned my call either!
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Postby sewwhat » Mon Sep 21, 2009 6:23 am

I also could not sleep after reading about CCSVI. SO exciting!
I get a bit intimidated on this board because everyone sounds like a doctor!
Guess it just takes a lil time to get familiar with the terminology.
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Postby IHateMS » Mon Sep 21, 2009 8:51 am

Welcome bluesky. I remember you from braintalk. I think many of us are new here. It seems to be the only board/forum with an open mind about CCSVI. No pun intended.

different name on braintalk
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Postby chrishasms » Mon Sep 21, 2009 9:34 am

123
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Postby magoo » Mon Sep 21, 2009 11:02 am

Excited is exactly how I feel. I've been doing exactly what you said, reading everything! Now I sit and wait for Dr. Dake's assistant to call, tick, tock, tick, tock, it's pure torture! Everyone is extremely helpful and kind here. Best of luck in your journey:)
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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Postby CNClear » Mon Sep 21, 2009 11:35 am

I'm new too, to this site, not to MS...I was diagnosed almost 30 years ago...(well that just sounded horrible!) and I am 50 now...I am so excited about getting a call back from Alex or Dake, that it is just about all i can think about!

I did finally get my PCP to give me a referral to a Vascular surgeon...just got it over the weekend, so now i am waiting for a call back from the vascular office...I'm hoping to get Kaiser Permanente to pay the vascular guy to do an MRV or Doppler or some kind of venography...I think that may be all they will pay for...has anyone else gone out to Stanford who has an HMO type of insurance?

Did most people, who have already had the surgery, get a venography first from a local radiologist... so that you could send it to Dake? What I'm asking is if I have to have a venography and a confirmed diagnosis of CCSVI BEFORE I can get an appointment with Dake? Could that be why I haven't heard back from Alex?

Thanks to everyone for taking the time & effort to share all the important info here...I can't thank you all enough!

And welcome to the other newbies!

Lisa
aka CNClear
CDMS 1983, now age 50
waiting to hear from Alex....
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Postby MaggieMae » Mon Sep 21, 2009 11:43 am

You do NOT have to have an MRV before seeing Dr. Dake. We tried to get an MRV for my husband at one of our well-known local hospitals and they could not do the test. If the test is not done properly, then it is a waste of your insurance monies. I would go straight to Stanford for the test and procedure.
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Postby cheerleader » Mon Sep 21, 2009 11:53 am

Welcome to the new posters!
Of course all are welcome here....we're all "newbies" at one time. I still remember how sweet Lew and Jimmy and the gang were at welcoming me two years ago when my husband was diagnosed with MS, and I didn't know what to do...
Just a bit of background. I contacted Dr. Dake and brought him professor Zamboni's research just last February, since we live in California. My husband was treated for severely occluded jugular veins with stents in May. Dr. Dake did the MRVs himself and performed the surgery at Stanford. It was covered by my husband's insurance, since the vein closure was over 60%. Dr. Dake treated him for closed jugulars....not MS, not CCSVI. My husband had an MS diagnosis for two years, and was a 1.5 EDSS. He's had relief from fatigue and heat intolerance, pain and spasms. He is the furthest along from his procedure at 4 months. I asled Dr. Dake if I could post our story on line...and he was game! Dr. Dake was so fascinated with the venous connection to MS, he's still seeing patients at Stanford...up to 40 now, I think. Most are on TIMS.

Dr. Zamboni has treated many more patients in Italy-almost 500- using a catheter and balloon procedure to open the veins- called the "Liberation" technique. The furthest out his patients are is two years. I want to be very clear that this is all new research, and we truly don't know the full story....but it looks very promising.

Please read the research "stickies" put together by Marie at the top of the forum...we know there's alot here to digest. Use the search function to search this forum for specific questions, and don't be afraid to ask if you can't find the answers...
welcome!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby bluesky63 » Mon Sep 21, 2009 9:26 pm

thank you!
Last edited by bluesky63 on Sun Mar 13, 2011 9:33 am, edited 2 times in total.
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Postby CureIous » Mon Sep 21, 2009 9:57 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:36 pm, edited 1 time in total.
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 HappyPoet » Tue Sep 22, 2009 2:07 am

Welcome Bluesky and Everyone else who's new!!

I'm a CCSVI-newbie, too!

These people here are, indeed, an amazing group of people who never seem to tire from answering questions about CCSVI (which has a very steep learning curve) . . .

Why, Cheer, always amazing, just answered a question for me that in retrospect seems so silly that I asked; she didn't make me feel small or like I had taken up her valuable time (even though now I know I had).

I love this place and the people here.

Sadly, my CCSVI quest has been interrupted because now my ten-year-old diagnosis of MS might be changed to NMO (neuromyelitis optica = ON + TM + mostly clear brain).

If I do truly have NMO, then all the MS DMD's I tried, which didn't help, truly were for naught because the standard approaches to the two very similar conditions are very different . . .

So I will forever proceed with extreme caution whatever I decide to do; thankfully, everyone here is very respectful and understanding about people's needs to balance CCSVI info with their thoughts and worries.

Yes, I love this place, including the original TIMS.

~Happy :)

P.S. Welcome again to Everyone!
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