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Posted: Wed Dec 15, 2010 8:38 am
by concerned
CCSVIhusband wrote:Found it ...
concerned
Family Elder
Joined: May 20, 2010
Posts: 585
Posted: Fri Nov 26, 2010 1:37 am Post subject:
Thanks Lyon and Cece.
Also, my mom was "screened" for CCSVI almost a year ago. They found narrowing, but not stenosis.
...
From the thread "Experimental MS treatments and the ethical issues." page 2
You can't find 'stenosis' per se by doppler (and that's a broad term anyway - and if the issue is valves as our doctors conclude, those are well below the clavicle, and would be seen via venogram, which this case seems to warrant based on "narrowing") ... you could see narrowings though. (you can ask Dr. Sclafani what he'd do if he saw narrowings on an ultra-sound though ... he's available)
again, I'm not getting into a tit-for-tat ... I'll just let the statements and arguments of others continue. Just think all the cards should be laid on the table for everyone to see what has been said and when.
just saying.
me
"================" <--- the fray
I think you should have scrolled down to this part:
I'm pretty sure I read Dr. Sclafani say that a narrowing is not necessarily a stenosis. The diagnosis said "Some narrowing, but no stenosis.", although, I'll give her that the diagnostician was not trained in the "Zamboni method".
Posted: Wed Dec 15, 2010 8:45 am
by concerned
LETS GET THIS STRAIGHTENED OUT
COLLAPSED VEINS ARE NOT STENOSES VEINS
NARROWED VEINS ARE NOT NECESSARILY STENOTIC VEINS
IF THERE IS NO FLOW IN THE JUGULAR VEIN WHEN YOU LIE DOWN, THEN YOUR JUGULAR VEINS WILL BE NARROWED, JUST AS EVERY HEALTHY PERSON HAS NARROWED JUGULAR VEINS WHEN THEY ARE SITTING UP AND THE BLOOD IS DRAINING THROUGH THE VERTEBRAL VEINS.
IF YOU HAVE AN OBSTRUCTION OF YOUR JUGULAR VEINS, THEN YOU SURELY COULD HAVE NARROWED VEINS WHEN YOU LIE DOWN.
From Dr. S.
Posted: Wed Dec 15, 2010 9:19 am
by Cece
ok, bonus points for quoting drsclafani.
"Not necessarily" means it could go either way? That was how I understood it too, I wouldn't agree that she for sure has CCSVI (unless from a different angle you go with the apparent situation that nearly every person with MS has CCSVI). But I would think if a technician commented on the narrowing, it would be because it was abnormal narrowing, not normal narrowing. It's all carrot juice anyway, I was recently told, until you get to the catheter venogram. ;)
Posted: Wed Dec 15, 2010 9:29 am
by concerned
Cece wrote:ok, bonus points for quoting drsclafani.
But I would think if a technician commented on the narrowing, it would be because it was abnormal narrowing, not normal narrowing. It's all carrot juice anyway, I was recently told, until you get to the catheter venogram. ;)
They commented on the narrowing because she asked them to find stenosis in the IJV, which it seemed was what this was all about 1 year ago.
Posted: Wed Dec 15, 2010 12:15 pm
by thornyrose76
Cece wrote:thornyrose76 wrote:Okay, I believe you, I just really didn't know who you were/are initially and I'm in a similar boat as your mom. I can type but the hands are beginning to go, I haven't walked since 26 prior four years couldn't walk well, and I'm not quite 34 and a half so believe I know wherer you are coming from. Testing and treatment this side of the 49th parallel in tandem with a research arm could/would help me and your mum and cost far less than $10 000 +.
oh, thornyrose.
I knew concerned's story, I didn't know or had forgotten all of yours. MS is awful.
It sucks, Cece, pure and simple!
