CCSVI One year after w5.
Well it's been a year sinc w5 made ccsvi common
I wanted to keep people up to date on ccsvi, and
where this canadian ms patient has gone with it.
Not far. So far.
Ya I went to poland but I said no to the stent.
Since someone died the other day and the list of complications has
grown this seems wise?
My MS seems ok right now, so no desperation moves
are in order.
Dake down at stanford is amazing me though. I don't
think he's published yet but he has 20 out of 20 (19?) one year mri's
that show no new lesions or progression on his MS patients. Stopping
progression is the name of the game and he seems to have done it!
Hopefully there isn't a gap between the things the
good doctor tells his patients and the science that gets published.
His people have stents though. Multiple
stents in some cases. He's also the guy who's patient had a stent slide
down the vein and require open heart surgery to get it out. Still he's
top of my list on doc's I'd like to go to right now. I don't think he's
operating right now though. He got shut down.
Haake at Mcgill using the powerful 3 tesla (and
more) magnets has a study going where he's reporting 49 out of 50 ms
patients have ccsvi.
Dont know if Simka from poland has published yet but
he has 381 patients with ms that he has studied and 94% have ccsvi.
Mostly it's ok but sometimes at night I'm in a
boat going over a waterfall being sucked down and I scream and crawl
for the bank.
The river is complacency, the cud chewing glazed eyed march of
Ectrims was a big gathering over in gothenbug sweden
last month. Noteably there were no papers that denied the existence of
ccsvi. The 2nd gen arguement is that ms causes ccsvi.
A fascinating debate. Turns out zamboni did a paper
as far back as 1990 where he looked at the veins of children in
Sardinia. He found a group with ccsvi. 90% got ms a few years later.
The strong part of the ms-ccsvi argument is
progression.. Buffalo found ccsvi in 89% of secondary progressive ms
patients but only 49% of relapsing remitting (milder) ms patients.
2 controls were found to have ccsvi in these
studies. Both of them developed ms in the following years.
This debate is key right now. For me it comes down
to this: Is ccsvi congenital, a truncular developmental disorder, or is
it caused by ms?
The international union of phlebology a group of
vein doctors from 40 countries classified it as truncular.
Simple physiology. If scar tissue
was washing down from the brain, causing a 'clenching' and stenosis,
why would it stop in the jugulars?
In another dream Im on the river and it branches.
Down one fork I'm in a wheelchair, the disease has done damage. Down
another fork my silent screams are somehow heard, I get the care I need
in a timely fashion and all is well.
Here's the interesting paragraph from
last summer's negative study out of Germany.
Blood volume flow in both internal jugular and vertebral veins was
equal between groups while subjects were in the supine position, they
noted, but when subjects moved to the upright position, the decrease in
total jugular blood volume flow was less pronounced in MS patients vs
controls, leading to a significantly higher flow in that position.
Zamboni points out that this is actually proof that
there is blockage in the MS patients.
ADDENDUM: Dr dake speaks out