Hi! Anna wanted to share her "negative" MRV Pics

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

Hi! Anna wanted to share her "negative" MRV Pics

Postby CureIous » Mon Jan 04, 2010 11:17 pm

Our champion lurker, fellow MS'er and one STELLAR hockey fan from the Great White North, has bequeathed to me the honor of displaying her "failed" MRV with you all, as an example to poke, prod, digest, dissect, discuss, or just gawk, and yes, she has a GOOD sense of humor. (Glam Shot Alert:any scouts out there please contact her agent)

Anna took a trip as many Canadians have, to just over the border to Seton Imaging in Buffalo, which many in here are already familiar with.

Please do keep in mind, it is my contention that the pathologist, along with the imaging center, made a truthful and professional assessment of the scan, and that cannot be overstated. This is not a "gotcha" moment here, it is just talking, looking, and discussing with each other. On first blush, the scan appears to be perfectly normal, and the pathologist was doing what they must, reporting "no obvious stenosis", and there isn't!! (Any obvious) It goes without sayng, we want our diagnostic centers/hospitals, to vigorously pursue excellence. If there's a chink in the armor, we'd like them to assess and improve their learning curve, not just blithely insist that "good is good enough". (Not insinuating Seton had that attitude by any means)

But, others might tend to disagree with that statement too. (Yes, I disagree, as a layperson with zero medical training FWIW, and one who is "biased" towards the CCSVI model, nuff said)
As a second caveat, let it be known that our dear Anna is very interested to get 2nd, 3rd, 4th, or as many PROFESSIONAL opinions from qualified individuals in the related fields, and will take whatever action she is going to take, based upon that, (along with her consulting physician) and not anything you or I or anyone else on the internet will say.

Just wanted to make that crystal clear for posterity, and to encourage our newer ones , or those who've received scans in the negative column, that the story does NOT end there, it is NOT the end of the world, and when the UT techs and equipment get up to speed, when the universities, hospitals, and clinics get trained, equipped, and are prepared to adequately deal with the onslaught of MS patients that are coming, then things will get better.

Some, of course, don't have that luxury, and some are very curious and don't mind spending the $ to get the scans, I know I would in a hot second, some have the luxury of time to wait for studies or other forms of subsidizing the cost of getting evaluated, everyone is in a different boat here.

That being said, let er rip. (REMINDER: KEEP AN EYE ON THE "L" OR "R" ON THE PICS, THAT TELLS YOU WHAT SIDE OF THE BODY IT IS ON!)

Here is the MRV COR shot: (Cor="Coronal")
CLICK http://tiny.cc/vIoWe
TO VIEW LARGER SIZE
Image

This is the MRA (A=Arterial) TOF shot (TOF=Time Of Flight).
CLICK http://tiny.cc/bKVvD TO VIEW LARGER SIZE
While MRV (Veins) is more desirable, some places toss it all in the same boat, and catch it (the contrast dye) going UP the arteries then DOWN the veins.

Image
Interesting how Dr. D and others are finding that the right side on many individuals is the "dominant" side for flow. Wonder if that has to do with years of sleeping on that side? Don't laugh, might not be far off! If you look at scans of children that are online, their veins look very symmetrical. Shrug. Toss in the debate pile.

Okay on to a shot from the LEFT side, the MRV TOF, (but the Right is still visible, will put a combo shot up last) looks like a bunch of veins stacked up on each other, plus with the S shaped vertebral arteries in the middle. This is one of the drawbacks from my POV, in that there's so many vessels stacked up on each other, in PRECISELY the rotational view that you need to see the bend where the jugs go in and down, that the "good part" gets lost in all the noise. (And yet another good reason to NOT get an MRA)
On the axial shot (on the right), you can see the apparent stenosis, facing towards the back of the head at nearly a 45 degree angle. And you will also note, that it is right at the level of the lower part of the ear, where many other stenoses have been found to date.
But, when rotating the TOF series to get that same angle of view, everything else is then in the way, hence our "lost shot". Hope that makes sense. That corner where they drop is where I'm putting all my money at this point. Later on will put a more detailed "blown up" version of this picture, as I believe it is telling.


CLICK http://tiny.cc/j7CUN TO VIEW LARGER SIZE
Image



Once again, another combination shot, this time the Coronal view (on the left), compared with what is seen from the "bottom up" for that same area on the axial view. Too bad we can't get that coronal on a 45 eh? It just might show that narrowing light up like a Christmas tree.

CLICK http://tiny.cc/xonlW FOR LARGER VIEW

Image



Lastly, I wanted to zoom in and rotate the 3rd picture, to illustrate what I mean by viewing from a 45 degree angle. I rotated the MRA TOF shot to show the R/L IJV's more distinctly, sacrificing a bit of what appears to be the view of the narrowed portion (right where it dives down), and correlating that view to what you might see looking at it from the side on the axial.

CLICK http://tiny.cc/6oJ6k FOR LARGER VIEW

Image

Well that's about it for now, sure would welcome comments or criticisms. There's more to come on this scan in the future, as it will be reviewed by "the pro's" and will post up their assessments, good bad or otherwise.

Enjoy. Thanks to Anna for allowing us to look inside her head ;)

Mark. (Who reserves the right to be W*R*O*N*G)
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
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Advertisement

Postby Johnson » Mon Jan 04, 2010 11:47 pm

I did appreciate the pictures very much, and did not mean to diminish them, or your work (a lot of work!), Mark. I can see what I think are all kinds of oddities. On some of them, like the first shots, it looks like a large "ballooning", followed further down by a complete tapering out. And just what might have prevented the contrast from going through?

The next shots look to me like the veins are pinched on both sides, particularly the left. I see the same "squishing" in the 3d set (top - looking down) in some of my own MRIs.

I'm not radiologically inclined, so I haven't a real clue. I wonder if some technicians are similarly handicapped. I think that is why Zamboni admonishes labs to image 100 with "normal" veins, in order to be able to see the deviations. It's like Rorschach.
Last edited by Johnson on Tue Jan 05, 2010 2:01 am, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby babiezuique » Tue Jan 05, 2010 12:26 am

I appreciate your fine spirit!
I'm not fluent as i am in french to participate actively in the discussion but i cant stop reading all your threads;)

I'm acutally reading Mateo's story.... we have a lot to look for to get the full control of our health!

have a good night

The girl from Laval city in Québec Canada ;)
User avatar
babiezuique
Family Elder
 
Posts: 121
Joined: Mon Dec 07, 2009 4:00 pm
Location: Montreal

Postby Johnson » Tue Jan 05, 2010 12:38 am

redacted
Last edited by Johnson on Tue Jan 05, 2010 1:43 am, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby CureIous » Tue Jan 05, 2010 12:46 am

I'm sorry but I worked 3 hours on this post alone, and haven't the foggiest what these last two posts are about in relation to the scans, can you guys possibly pm next time or something? Thanks.

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
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby frodo » Tue Jan 05, 2010 1:07 am

Has she tried to send the pics to Dr. Dake or Simka?
Maybe the doctor just didn't know what to look for.
And by the way, what are the last two posts about?
User avatar
frodo
Family Elder
 
Posts: 616
Joined: Wed Dec 02, 2009 4:00 pm

Postby Mechanicallyinclined » Tue Jan 05, 2010 1:07 am

not to be rude to anyone but I agree with curIous. This is a thread we should pay attention to. (on topic)
User avatar
Mechanicallyinclined
Family Elder
 
Posts: 128
Joined: Mon Dec 21, 2009 4:00 pm
Location: Manitoba Canada

Postby babiezuique » Tue Jan 05, 2010 1:21 am

When i was talking about fine spirit i was talking about the proposition of those very interresting ''negative'' from Ana... and this idea that whith all this ''brain'' concentrate we can find here... i feel like maybe we are going to be good in analysing those ''negative''.

when i was talking about : FINE SPIRIT... i was talking about this!

Maybe you felt bad because someone wrote to me in french, what was very nice and gentle.... but please calm yourself and dont worry I'm totally into it....

I'M still analysint those ''negative'' whit all the lucidity i have ;)

The girl from Québec... who still find people here whit a very fine spirit... and for the others... well I cant do anything to help you with your stressfull way to handle reading french!
User avatar
babiezuique
Family Elder
 
Posts: 121
Joined: Mon Dec 07, 2009 4:00 pm
Location: Montreal

Postby Mutley » Tue Jan 05, 2010 2:48 am

Wow, that’s a really fascinating post Mark - thank you, I know it must have taken a lot of effort.

I’m still getting up to speed regard my understanding of anatomy and the relevant mechanisms that underpin CCSVI. Would you expect to see any collateral blood flow in the pictures you have shared here, or is a different kind of scan required to highlight that?

What else can you tell us about Anna? How long has she had MS and how is she?
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
User avatar
Mutley
Family Elder
 
Posts: 209
Joined: Thu Nov 12, 2009 4:00 pm
Location: England

Minimal/no venous restrictions - so what

Postby MarkW » Tue Jan 05, 2010 3:55 am

The Zamboni correlation (MS and CCSVI) found a 100% of pwMS with CCSVI on a published sample of 65 (ie correlation equals 1.00). Most scientists would expect the correlation to reduce with a larger sample, like the Buffalo NY study. The logical scientist's view is because MS is a complex and multifactorial disease which has been studied for 100 plus years.

So don't worry be happy 8)

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1149
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

Postby zap » Tue Jan 05, 2010 6:55 am

I have been trying to get Dr Dake's office to send me a disc of my MRV scans (without major visible stenoses, but with a somewhat narrowed left jugular at the jaw level), so I can share them with you all - but so far I cannot seem to get a response to my several emails and calls. :( They told me they'd send em out if I asked I just can't get them to acknowledge that I am asking.
User avatar
zap
Family Elder
 
Posts: 326
Joined: Mon Apr 20, 2009 3:00 pm

Postby Arcee » Tue Jan 05, 2010 7:13 am

You actually don't need Dake's office to get a copy of your scans as you can go right to the image-keepers. No surprise, Mark has explained how to go about that. I followed his instructions, downloaded the form from the site, faxed it over, and go the scans no problem.

Here is some of his instructions:

You SPECIFICALLY need to go to the Radiology Film Library, they are who you need for this, not medical records. http://stanfordhospital.org/forPatients ... cords.html

Radiology Images
If you are requesting radiology images, telemetry tapes or photos, you must contact the department that collected the data.
To obtain a copy of these records, please print and complete a separate Authorization for Disclosure of Health Information form
You can contact:
o The Radiology Film/CD Library by calling (650) 723-6717
o EKG Film Library by calling (650) 723-7407
o The Pathology Slides Library by calling (650) 723-7211
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 4:00 pm
Location: Massachusetts, USA

ccsvi

Postby annad » Tue Jan 05, 2010 7:38 am

Hi to all,
Mutley asked:
What else can you tell us about Anna? How long has she had MS and how is she?
What would you like to know? lol
I'm new to this site and ccsvi so I don't feel comfortable enough commenting on my newly posted 'glam shots'. I am certainly not stopping here because I got one result of "normal". Most people who know me will tell you I'm anything but. . . ha ha
As for my MS . . .I've been diagnosed 17 years with RRMS. I'm still doing 'ok' but we all know that's all relative. After my last attack, 6 years ago, I was left unable to work due to my fatigue and my legs that don't care to work or walk as much as they use to. Like everyone else, I have good days and bad days or rather. . . worse days and bad days.
I have been attached to the computer since W5 aired and I am certain we will all find some relief from the Mighty Sexy disease in the very near future. The soon the better!
best wishes to all on this journey!!
User avatar
annad
Family Elder
 
Posts: 207
Joined: Sat Nov 21, 2009 4:00 pm
Location: Ontario, Canada

Postby CureIous » Tue Jan 05, 2010 11:51 am

Mutley wrote:Wow, that’s a really fascinating post Mark - thank you, I know it must have taken a lot of effort.

I’m still getting up to speed regard my understanding of anatomy and the relevant mechanisms that underpin CCSVI. Would you expect to see any collateral blood flow in the pictures you have shared here, or is a different kind of scan required to highlight that?
What else can you tell us about Anna? How long has she had MS and how is she?


Hi Mutley! Glad Anna popped in to say hi too. As far as collaterals, many are too faint to be clearly seen on the MRV's, but are readily seen on the venogram conducted during the operation. Most collaterals, if they even are visible, will show as a faint hazy area on the MRV's.
I saw mine on the images that Dr. D had, but cannot seem to get the vengogram out of Stanford right now which would clearly show them. I had some pretty big collat's showing on my MRV, (not including the ones that showed and "dried up" post-stenting on the venogram), but everyone is different. Plus I want to note, that Anna's scan didn't really go down far enough to adequately pick up the collarbone region, another prime suspect in our stenosis hunt. Come on UT we need ya!

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
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby Sharon » Tue Jan 05, 2010 1:48 pm

Mark -

Nice work! Maybe you could get a new day job looking at MRV's. You seem to be able to pinpoint the problems where the radiologist technician doesn't see a thing abnormal.

I agree with you - the image 120/162 with the "squished ovals" is an image of a problem vein. A normal vein would image as nice and round--like looking down through a straw.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service

cron