This Is MS Multiple Sclerosis Community: Knowledge & Support

Finally figured out how to convert .dcm files to .jpg then upload to a host!!
Over 1,195 individual images in the test....picked a few that makes sense to a patient (Me).

Donnchadh

Left side view...the IR did a lot of ballooning just to the side of my ear.



Rear view...(I believe the correct medical terminology for this is "rat's nest").



Side view...collateral veins galore!



The only solution I think are stents.



And the reaction of my neuro when I asked about CCSVI?

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Wow! You have a beautiful cranium.

Could you put up some shots that show the neck and upper chest veins? Doc. Sclafani posits that upper stenoses are caused by obstruction lower down, and Radek's experience might seem to bolster that. It seems that the American IRs go high, and the Europeans, low.

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My name is not really Johnson. MSed up since 1993

Hey!

I was born on the Brooklyn Bridge. that is not exactly in europe

Sorry, Doc. I might say that I don't know what I was thinking, but obviously, I was not thinking at all.

Actually, I was thinking that Geo'town and Dr. Dake, and perhaps someone else that I can't think of, seemed to me to be finding, and targeting higher stenoses. I got a different impression of your view.

I was thinking, after I wrote that, that I did not qualify that my thoughts are just a product of impaired thinking, and I think that I might have written out of line.

Maybe it is your way of thinking that seems to me European. Brooklyn Bridge, Pont Neuf...

Thoughts?



Sorry Donnchad.

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My name is not really Johnson. MSed up since 1993

I like the Neuro's reaction LOL

I don't know whether to cry or go postal! Today I got a copy of the radiologist's report of the MRV images.

They examined the images basically looking for any signs of brain lesions (there are some) BUT, BUT, BUT not a word, not a single word about the veins!! This is with contrast dye being used to specifically highlight the vein status.

THAT WAS THE ENTIRE PURPOSE OF THIS PARTICULAR MRV, AND THEY WERE TOLD THAT BEFOREHAND.

How any trained radiologist could have examined these images and NOT see and remark on the extensive network of collateral veins simply amazes me. It is obvious to me that their outlook is focused on the old neurological MS assumptions, and not aware of the consequences of venous problems in the brain and spinal cord.

It is not NORMAL to have such an extensive network of collateral veins and should have rang some warning bells that something is amiss with this patient. It's one thing for a problem not to be visualized on an image, but quite another for it to be clearly evident but not noted.

Ignoring the 800 pound gorilla in the room comes to mind.

My take-a-way is that I am not surprised by many MSer's relaying "false negative" ultrasound and MRV reports. The technicians and radiologists HAVE to know what they are doing and what the images MEAN.

Rant off.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

They have to be told what they are looking for: the missing C behind chronic and cerebral is Congenital. Probably very peri-natal. Probably born with it. Family members probably have it. Vein defects there from birth. Now causing a world of trouble, but you have had them all your life..

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Yeah, that would irritate the heck out of me.

But in defense of radiologists, they're going by what they were taught, which is that there is wide variation in the routes that veins may take down from the head and therefore to pay no attention to it. If it was near a liver, now, maybe that would trigger a concern?

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition