Thank you for responding -- it is such a huge forum, I wasn't sure if anyone could 'hear' me!
One of the things I'm figuring out is that for EDS (especially with viral-induced autonomic dysfunction and all that it entails), a lot of us have poor CSF (and/or veinous) drainage from our brains, which means we can't get the fresh oxygenated blood IN, because we can't get the fluid OUT -- there is no room, if you get my drift. Hence, the "brain fog", collection of crud (that's a scientific term)
on our brains and all of the fall out from that (fallout including the development of MS).
For many patients, angioplasty is not effective if we can't get the CSF INTO the veins in order to drain (our arachnoid villi are either damaged from the connective tissue disorder, or from viral antibodies that can cross our deformed blood brain barriers -- which are made of connective tissue, dang it).
You still with me?
So, we reduce the pressure immediately with Diamox (by decreasing CSF production and encouraging drainage because it is also a mild diuretic). Now if that works, we've just avoided a shunt.
If Diamox is not fully effective (like me), I believe it is because not only is the fluid not escaping our brains through the arachnoid villi, but what does escape into the veins is not draining correctly (because of the CCSVI). And yes, my son and I have slam-dunk CCSVI and I truly believe we prevented the onset of MS for him by treating him with angioplasty. (Yes, it's a new procedure, but if you look at my horrifying family tree, you would see why we decided to go for it).
My son and I still are religious Diamox users and without it, I actually have CSF fluid coming out of my nose (lovely visual) -- a "CSF rhinorrhea". We are hoping that by reducing the pressure on our brains with the Diamox AND by keeping the veins in our necks open and ready to work, we are doing everything we can at this point to reverse the downward cycle, and preventing not only MS, but perhaps other neurodegenerative diseases (more on that later). This is also why we're having our 14 year old daughter checked and treated if she shows CCSVI.
My son has "jugs" just like mine (I'd put in a pic if I knew how). One is too large from a faulty valve at the base (which was ballooned) and the other IJV is so small I can't believe the IR even found it to balloon it! My son hasn't noticed much of a difference, but we had to cut back on his Diamox in order to make him less acidic so it would work again. I think in our family (and many others), it takes BOTH - drainage FROM the brain into the veins, AND drainage OF the veins. Does that make sense?
And we slanted his bed, also, when we saw the bidirectional flow from Haacke's report. But he just slid downhill and was in this little ball at the bottom of the bed! We're considering velcro. ha.
I would like to see MRI's of "failed" angioplasties, to see if they have the classic presentation of slightly high CSF pressure (likely from birth, which is one of the studies we're heading up). I've been able to find a handful of kids who have autonomic dysfunction whose head circumference in the first 15 months of life (before the skull sutures are closed) grows TOO FAST -- a sort of communicating hydrocephalus, but not to the point to cause seizures. I believe CCSVI is congenital, and am starting a study soon to see if that is the case.
Lots of new things coming up. I am a proponent of CCSVI (but not shunts yet, unless they are the only option) because angioplasty took away all of my "MS" symptoms, though not all of my autonomic dysfunction. I'll have my theories for all of this on the new website. Whew.
I'm sure you're about to nod off here, but I look forward to sharing all of this with you guys.
I'll see if I can find Flashover...