You missed something, you/we can now have the scans & testing done electively by self-referral, this is not for a research study, it's a paid service. The objective is to learn and document whether I'm a candidate for the liberation procedure which I would also pay for out of pocket.

Don't worry, I won't make any rash decisions, I'm slightly methodical and a tad on the systematic side. ;)

Oh, thanks Cindy. I would get it done too. It's only testing. I would really like the procedure to follow the testing. I am trying to find a place that does the whole gizmo. I am willing to travel, but not out of the states though.

I applied for Albany, NY, but didn't get any response. I think the procedure is waiting for the June 24th outcome reports. I know NYC is doing it somewhere.

It's like trying to find a needle in a haystack. As soon as I find a place, I am going. :D

What I want
 

I want you all to go and have the procedure.

I want to find out how it goes from people in this forum. You have credibility for me and if you meet with some success, I will know that CCSV is a viable option for us MSers.

I want testing to go on at Mayo. I keep wondering why the MN and AZ hospitals are not doing any research. Maybe they are, I just do not know really.

I watched the first YouTube videos of that woman. Then I saw her jump. It has been a long time since I was able to simply jump.

I don't care if it lasts a long time. I have just wanted something, if only for a day.

I am watching carefully. If it was in my neighborhood and by a doctor who understood what to do, I would pay money.

I want.

I agree with everything you said, except for your highlighted words. I would go over the deep end, if I had it all back for a day or even a week or month and then went back to the way I was. NOOOOOOOOOOO way!!!

Hey Sal - I still would take a day without symptoms, even if I knew there was only those 24 hours. It would not make me crazy at all, just resigned which is where I am mentally as of this moment.

To walk normally, to jump for joy, to dance goofy. To have a moment without the numb feeling, the spasms in my legs.

Yes, I watched that woman get so excited to jump. It hit me very deeply. It made me sadder than usual.

This week I'm feeling like that woman looked in the first video.

I dont like this feeling at all. I especially dont like it right now because there are houseguests in my house that seem to think that I can control these symptoms. I also dont like it because I dont know if this will ever go away.

I'm going to go do a follow up with my regular doctor about the steroids (neuro had my regular doctor do the Rx-ing of my IVSM because he was going to be out of town and wouldnt be available to help me if there was a problem)

I think when I do the follow up with the regular doctor, I'm going to ask him if I can have an MRI (in the really big giant open machine that one of Omaha's hospitals has...) I want to see if this was a back problem from a chronic back problem, or if it was from the MS, or a combination of the two. (I'm leaning towards it being an MS thing because of how crappy I feel)

But, while I'm in there, I'd like them to look at the veins in my neck. (isnt part of the investigation for the stenosed veins an MRI?)

I might not have the surgery immediately, but I would like to know if there was a problem that I could potentially deal with later.

I just dont like feeling like that woman looked in her first video. I'd like to feel like I did a couple of weeks ago instead. I felt great then.

I know of 2 PPMS male patients who had it done weeks ago, One could not have all veins helped at all, one a "successful" surgery. Neither has seen any gains. PPMS is very different from RR I also think.

I just read this today. Kuwait is giving all their MS patients the CCSVI Liberation Procedure free. Here is the report so far. If they all get improvement or cured that would prove something.

http://ccsviworldwidevictory.com/Kuwait.aspx

I watched a couple other youtube videos on CCSVI. They were from a gal in Melbourne-seemed more reasonable BUT who knows maybe the less than 24hr Denise is for real, too. Certainly want her to be :)
I will ask my neuro to order the scan-hope he will. Then I'll take it from there depending on the outcome. Even traveling to Italy (Dr. Zamboni, if possible) is probably less expensive than SCT out of the country.
Wishing us all well and Happy Mother's Day to all us mothers :D
Linda