Some clarifications on the AP article & week 3 symptom update

No one article can capture the true essence of what is being done here.  I thought the reporter did a decent job.  But for you my family and friends, I would like to clear up a couple of things. That's the cool thing about having my very own blog, I can do anything I want to here!  The italicized part below are quotes from the AP article.

1.  "A lot of people are starting to go to fly-by-night places," says Tornatore.  This is just his warning to MS patients to be careful.  Unfortunately discoveries like this inevitably open the door to unscrupulous people with $$$ in their eyes.  He's just looking out for us.  I also happen to know that he is more enthusiastic about the implications of CCSVI than he lets on in the article. I understand that he had to put on his serious doctor hat for the press, though.

2.  But nearly half had their veins relapse, and Zamboni urged a larger, more scientifically controlled study be done.  47% of Zamboni's patients restenosed.  The people who restenosed began having relapses of symptoms, or "MS-like exacerbations".  But he just went right back in and reballooned them.  Within 4 hours to 4 days of reballooning, they all improved.  We don't know yet if that second attempt resulted in a permanent fix.  Hopefully we will hear more about that from the good doctor soon.

3.  Next, Buffalo researchers scanned the veins of 500 people. About 55 percent of MS patients had signs of CCSVI, compared with 22 percent of healthy people  In an interview with a Canadian medical reporter Dr. Zivadinov, the lead investigator of the Buffalo study, indicated that it was actually 80% in Clinically Diagnosed MSers.  The 55% number included people who have CIS (clinically isolated syndrome) or only one MS-like event.


Also, for those of you who think I am brave for having this procedure, thanks.  The truth is that it was easier than having my filling replaced at the dentist yesterday.  Love the dentist, hate the drill!

Regardless of it's impact on my MS, 75-95% stenosed veins that drain blood from a major organ like the brain MUST be fixed.  The fact that this congenital problem came to light as a result of Zamboni looking for a way to treat his wife's MS is just a happy coincidence.

----------------------------------------------------------------------------------

Symptom update at the 3 week point: 

1. fingers and toes still warm
2.  balance still evolving.  It is still inconsistent, but I am starting to work hard on my hip muscles so that I can lift my legs better (do you see that G., my awesome PT?)
3.  new observation- I have not choked once since my Liberation!  It used to happen several times a week before.  Can't explain it, but it certainly makes me and the husband who worries very happy!