Look, now they're going to come up with all kinds of circumstantial or other arguments by professionals who say all kinds of things. Dr. Zamboni used Doppler ultrasound as a screening tool. His surgeon and himself then used a catheter, and their eyeballs, to dilate some veins they could see on a screen. I expect to have my veins dilated one day (not too far in the future, I can always hope). If they don't look like CCSVI on the fluoroscope, I'll be interested. I may ask someone like Dr. Haacke, to do a complete imaging of all my neck veins, with 3d and across-the-neck MRI images. Nothing he does will show flow 'live', though. What I think is needed at this point is an inflow measurement to the brain, and an outflow measurement from the brain.
This does not require more sensitivity or less hand pressure. I think it requires a different kind of tool, that measures the volume of all blood going into the brain for a given interval, and the same for all blood returning from it. Through all veins in the neck, and all arteries in the neck. Probably most times this can be estimated from x-rays. I am kind of counting on it, but hey, I didn't take it in University, so what do I know?
Why this is important, is visible to me, on the x-rays posted here. Let's say we speculate, that the first MS attack coincides with collapse or drastic reduction in brain outflow (mine seemed to happen while I was asleep). A kink in a major vein has happened. (Jugulars collapse during the day and are used when you're lying down?) In our scenario, the next thing that happens is that the gene they just found, that's connected to 'MS' and also somehow, to new vein growth, kicks in. My postulation is that new vein growth starts happening and eventually some threshold is crossed in the other direction. That is, there is enough new vein growth to make up for the lost flow. I think this is why although attacks are often sudden, remissions can be slow. It takes time to grow new veins.
Following the story, for a few major attacks or a lot of minor ones, this can continue. But after some limit is reached, the regrowth just ain't happenin' no mo'. I would guess maybe since we're now not getting enough blood to the brain, and whatever made the kinks happen isn't stopping, maybe it's now hitting collateral veins. So as with MS, I guess we get worse, maybe more slowly, because collateral veins are small. Perhaps by now lots o' damage has been done.
So then maybe there are two options:
1. Replace all the drainage veins with a few plastic tubes like my brother had in his jugular for 45+ years. Not preferable, but probably plenty good for geezers like me.
2. Dilate the veins, with stenting if the kinks come back.
Do I have that wrong? I don't care if a bunch of people want to fight over drug dollars. Just not on my time. I have only so much left, you know?
The right to life includes consenting medical treatment. I want my freedom back. Pete Seeger, I've never asked you for anything, but your inspiration would sure come in handy about now.
Step By Step
Step by step the longest march can be won, can be won
Many stones can form an arch, singly none, singly none
And by uni0n what we will can be accomplished still
Drops of water turn a mill, singly none, singly none.
From Ruthie Gorton, from the preamble to the constitution
of the United Mineworkers of America
Thanks, Pete. Help me you stones and water-drops.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
I am not a doctor. Do not take anything I say as medical advice.