Hi all, uploaded Manoj's MRV (partial)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Hi all, uploaded Manoj's MRV (partial)

Postby CureIous » Wed Jan 13, 2010 2:29 pm

FYI that's the way it came out of the files, a bit on the murky side. More to come. See that pinched down one near the collarbone on your left? It's the next to last shot. Will see what the others show here shortly. Up higher near the top of the scan, looks like a bunch of collats but hard to say.
Mark.


http://www.youtube.com/watch?v=RU5yZkeSRto
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby dialed_in » Wed Jan 13, 2010 2:53 pm

Thanks Mark!

I had little to no luck getting anything to show for me from his initial try at posting his images with zipx.
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Postby CureIous » Wed Jan 13, 2010 3:38 pm

More to come. Had an entire post explaining how, and dumped it on accident. The pics are converted one by one. The software is MRIcroN, easy to google and get. The one I'm doing right now from the bottom up, I wonder if the techs had their glasses on. Right side, collarbone, can't miss it. More later.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby ozarkcanoer » Wed Jan 13, 2010 4:18 pm

CureIous,

You should have been a doctor !! Maybe you can get a job with Dr Haacke designing software for CCSVI diagnosis, LOLOL. Often the "laymen" are better than the professionals. Especially when they are motivated like you are !!

ozarkcanoer
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Postby CureIous » Wed Jan 13, 2010 9:36 pm

For anyone interested, got the 2nd one up. This one goes from the bottom on up. Lots of washout in the head area, can't do much about that, but interesting that one spot that shows on the first one (that goes top down), same spot near the collar bone it pinches down. Hard to say much of anything on the cranial area, I think the scan the Dr's look at is higher quality than the transmitted copy. FYI you can left click and hold the slide on the viewer and go back and forth faster or stop. No popcorn though, sorry. Hopefully Manoj will check in later, they are 14 hours ahead of us on the West coast.

Mark.

http://www.youtube.com/watch?v=xkZcUPNuIq0
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby sbr487 » Wed Jan 13, 2010 10:19 pm

Thanks a lot, everyone ...
While I am trying to find out if there are more competent hospitals who can do this test, I was actually wondering if someone can start looking at the scans. But that has already started.

I have one question myself, would not the doppler scan show flow blood flow (I am assuming MRV is to see if there are visible obstructions in the veins)?
Can we have a look at that too?

Regards,
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Postby Vonna » Wed Jan 13, 2010 11:24 pm

Thanks for posting cureous. I am trying to get a picture in my mind exactly where the veins are and all. This helped some, though not knowing totally what to look for.

Love seeing this kinda stuff, just need help knowing what I'm looking at!
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Postby CureIous » Wed Jan 13, 2010 11:32 pm

Vonna wrote:Thanks for posting cureous. I am trying to get a picture in my mind exactly where the veins are and all. This helped some, though not knowing totally what to look for.

Love seeing this kinda stuff, just need help knowing what I'm looking at!


Yeah, I don't think any of us non-medical field people just go "oh okay there it is" lol. On the 2nd one I posted, if you stop at the part where I circled the left and right IJV's, pick one side, left or right, and train your eyes on that side only and follow it as it goes up, that will help to get oriented. IJV's are Internal Jugular Veins, our prime (but not only) suspect. The SVC is "Superior Vena Cava" where the IJV's dump their collective goods. Problem is on that scan, is when it gets up into the brain area it washes out so much it gets difficult to follow, not sure if it was scanned that way, or is just the way the pics get copied from the machine to a file, as the files themselves are pretty small and aren't high resolution. I'll get back to this later with some pics from the scan but little time. On the 2nd one, on the one part where it's labeled right/left, you'll notice the right side seems to squash down and form some collaterals.

In the 2nd video, you are standing under the shoulders looking up as it goes up thru the neck. If you note, on the right/left far edges, there's a couple of large circular things, that's the shoulders, then the picture narrows as it goes up thru the neck.

On the first video it was opposite, started in the head and worked down, same anatomy, different point of view.

:) Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Please explain

Postby manojag22 » Thu Jan 14, 2010 12:06 am

This finding are out my MRI scan or Doppler ??
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Sorry for the last post

Postby manojag22 » Thu Jan 14, 2010 12:25 am

CureIous,

You should be a doctor, sorry for missing your points in post, its clear from your post that the reding is from MRI as you posted it in youtube.

Waiting for your further analysis.

Thnaks, Manoj
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The Doppler test report

Postby manojag22 » Thu Jan 14, 2010 1:56 am

Hi all,

The color Doppler test report has a reading of Right IJV of 1.6 velocity of flow cms/s in erect position in compare to 19.1 of Left IJV.

In linking with MRV findings of Mark is this a problem ?? which the Doppler doc missed out also.

Manoj

[/list]
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Postby CureIous » Fri Jan 15, 2010 4:44 pm

Hi all! Got to chat (on messenger) with Manoj last night, pretty bright guy!

First off (wanted to ask him first), are the ultrasound pics, those are pretty awesome, lots of identifiers, even the valsava is shown. One needs to go to the originals though, they are HUGE pictures (but small file size), and very much worth a looksee!!!

Here's the link to SuperSize number 1: LINK

Image

Also to number 2:
LINK

Image


Secondly, it was helpful to understand how their system works differently from ours, insofar as MRI/MRV's going to CD is concerned! After discovering a few things from him, I now understand why those pics I posted of his MRV, looks so "washed out", and there is so much white showing, it makes it difficult to figure out what you are looking at!

See in India, it is common practice to hand the patient a CD, BUT, those CD's, instead of a standalone software, reader like Efilm Lite (like most of ours are in), they put a series of pictures, the entire MRV and UT, on one CD disk, as separate image files, which would be FINE, except, what those image files ARE, are compressed and basically squashed down versions of the originals, which come from NEGATIVES in the first place!

So they (beyond what they probably saw in the diagnostic center), hand the patient a cd, then the negs too, but the cd is just the negs, "sized to fit" as a normal CD is barely enough to hold that many images! So you squash them down smaller, but, that saturates the picture too! Too much info trying to jam into too few pixels, voila, white-out.

SO, what our good friend Manoj is going to attempt, is to possibly get regular pictures developed from those negatives that he has (they are about 1x2 inches each shot), THEN scan those, or have the negs scanned into workable, clean and viewable files. I think he would be better off getting full 4x6 pics or 5x7 developed from the negs, then scan them. It's pricey to say the least, but then possibly he can transit the pictures again and we'll get a crisper clearer view...

This is good though, all these unique situations are just adding to the knowledge base for the next person should they have a similiar situation.

:) Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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UPDATE

Postby CureIous » Tue Feb 23, 2010 10:07 pm

I know this deserves its own topic, but didn't want to post a new topic without the full story start to finish, but an important update on our buddy Manoj!


Manoj originally received the above scans about a month or so ago. I posted those on here for everyone to see and talk about, with his approval, this was so we could learn and look together, (not to open up a diagnostic center) but more importantly, since his tests came back as "negative", I wanted to document this from the start, with the thought in mind that if he gets another testing round in the future, and it comes up positive, we can use this as a good example for those who've had that unfortunate experience of hearing the words, "sorry, we didn't find anything on your scans", just like Manoj did.

My words to him at that time were, "It aint over til its over", and "DONT GIVE UP", especially in light of the quality of the scans and inexperience of the staff in dealing with this specific issue.
Well, he didn't give up, and worked very hard to get another scan, this time armed with every protocol he could get his hands on (including Dake's and Haacke's!), and was tested again, on a 3T machine, and wonder of wonders, they found two stenosed areas right and left!

"But wait, there's more!".

He then was able to contact and discuss the scans with a respected neuroradiologist, who agreed to treat one of the sides, as the other one was too low and he didn't want to touch it. So for those of you like me who took a stab at guessing on the scans, it's on the upper right side and lower left side. (of the body, not the pics).

Manoj has been very busy since the scans so has been unable to get us the new stuff, but it is forthcoming in the future, in the meantime, he is going to be a guinea pig (his words) and be treated tomorrow (Thursday), with one stent on the right side, but will be angioplastied first.

In less than a month, he went from negative scan to treatment!

Manoj will be posting up more particulars post-procedure, but expect that travel+operation= 10-12k give or take, and don't quote me on that. He is keeping the surgeons name under wraps for right now, but it's not (I don't think) any of the posted ones for India that I've seen on other sites.

He is excited, tense and nervous like most of us were pre-op, so say a prayer for our India test pilot, that's a brave soul indeed!

Mark for Manoj.

(P.s., also, as an aside his insurance is covering the procedure for opening up his stenosed veins!)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CureIous » Wed Feb 24, 2010 12:56 am

I made a smaller video of his first scan (the low quality one that was negative for obstruction), showing approx. where his diagnosed stenosis was found. Will have (hopefully) a much better quality set of images or a movie to post up when he gets me the images from his latest scan.

Considering how much attention and airplay C**** Rose gets on this site, I feel someone like Manoj trailblazing his way, on his own, in uncharted waters and being one of the first people in India to get Dx'd and treated, deserves 1,000 times more airplay than aforementioned thorny rose....

http://www.youtube.com/watch?v=xpp0upUzsGc

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: UPDATE

Postby sbr487 » Wed Feb 24, 2010 1:02 am

CureIous wrote:Manoj will be posting up more particulars post-procedure, but expect that travel+operation= 10-12k give or take, and don't quote me on that. He is keeping the surgeons name under wraps for right now, but it's not (I don't think) any of the posted ones for India that I've seen on other sites.

(P.s., also, as an aside his insurance is covering the procedure for opening up his stenosed veins!)


Thanks, Mark. Thats very good progress considering the timelines others have seen. A little bit of personal connect and you can do wonders with Indian system

From the price (travel is a give away), looks like he is traveling out of India.
I would be keen to know the details (as much as he deems fit)
It is easy to convince doctors when have a real case to quite such as this
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