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So..my results came in .. the radiologist has described an 'unremarkable' neck and head MRV with a few notes... He confirmed the lesions already known. He noted that the left internal jugular was dominant but there was no sign of extraordinary collateral veins. He noted that the azigos verticals seem to be normal but that the arch was too blurry to see.
Review of the MRV with my untrained eye..the right IJV is significantly smaller, less than half the size of the left and the asociated sinus vein is almost imperceptable? This was the case in all files from all angles.
Took me a few days to post .. had to shed the dissapointment but i'm ready to carry on now...
my question... what do i do now?
Anyone have a similar experience?
I saw my GP and she is tryng to get me in to see a vascular surgeon.
Is that comment... "the azigos arch was blurry" acceptable??

Thanks!...Pcakes

left side dominance, eh? oddly coincidental that my sister's scan would show the same thing, from the same clinic. you can save pics of the images by right clicking and choosing export, could you please email me the images you feel are significant?

PCakes wrote:I saw my GP and she is tryng to get me in to see a vascular surgeon.

This seems like a good next step. The vascular surgeon might interpret the same image differently. Good luck.

PCakes,

It sounds like your doc is working to find answers still and not accepting this as conclusive. That's good news.

Funny that we actually hope for negative test scans... I know what you mean and have been holding off going to FCSC for that reason. I don't how I would take the news that I was normal.

My doc said that a negative scan may simply mean "they can't locate CCSVI yet..." He's extremely optimistic about this whole new way of looking at MS.

~ Sandra

Hey Happy C... Thanks for the positive words.. ... wanted to let you and everyone know that it was not my doctor's idea to send me to a vascular specialist.. it was mine.. my gp, although a good person and willing to play along, knows little of ccsvi and is not showing much interest in learning more. I've yet to hear if she was able to get me an appt.
We are many...I believe in this and that we will be heard.
I'm so annoying..

Lilsis..was great talking with you... good luck!

Hi.

My chest MRV was normal, too. Oddly my stenoses were a standard CCSVI Type A: The azygos, just a little below the arch, the left IJV just behind the clavicle. Only a real venogram was able to depict the awful stenoses and made the surgeon shout: "Was your radiologist blind?"

Keep faith and go ahead asking for an answer based on 100% concrete evidence, be it positive or negative. An irresponsible answer of the kind "it is blurry", "I don't know", "I am not sure" is not an answer. Demand a scientific, 100% evidence based, answer.

sou

Hello Sou,

Thank you for your support and advice. I have been following your threads.. ..and look forward to more!!

Please... take care,
PCakes

I guess it matters that false creek doesnt have an mrv? Read the other false creek thread to see the list of gear they have and the list of gear they would need to do it rightl

Hi Pc,
Just to let you know my MRV was "Normal" and my Doppler was "Normal" in the UK
When I went to Poland Dr Simka thought he could see something in MRV that was suspicious and when he did the doppler he thought there was an issue. (but not reflux)
Anyway when I had the venogram the issues were very obvious. With loads of collaterals.

Billmeik wrote:I guess it matters that false creek doesnt have an mrv? [...]

MRV is a MRA of the veins, i.e. they can do it with their equipment. What they may need are the correct protocols for the MRI scanner.

My MRV done @ Stanford and reviewed by Dake did not show any significant stenoses or any collateral formation.

Although:

- my left jugular was visibly narrowed at the jaw level and perhaps is causing reflux (no usable doppler scan performed). (I'm still not sure if Dake would have recommended a stent if the procedure hadn't been halted the day I was out there)

- there may be stenoses not visible in the scan performed (perhaps transitory/posture dependent?)

- I might not have MS at all (I was only diagnosed in 2006 and had some weird stuff going into it including what seems to have been a Transient Ischemic Attack or mini-stroke)

- I might just have very mild MS - and mild/subtle reflux/stenoses

...

I am stilll very excited by CCSVI, but for me it looks like it'll be a long wait-n-see for the time being ...

Bill, False Creek's machine is doing MRV!! All of the scans
I have looked at say MRV. Please look at Gingers at http://Iamsick
ofms.blogspot.com - done at False Creek. If people do not get
this info straight no professional people will want to come to this
board. An MRI does both MRA and MRV.

Also it clearly says on MS-Liberation page that you have 2
choices to possibly find CCSVI 1. MRV or Transcranial Doppler.
Please take a look at the scans if you have chance.

Im just working it out to go to false creek. They have an mra and that can do veins so that's ok but they have no transcranial doppler. I mean they're not even seeing 50% yet so I should wait til after they train with simka in a month but I need some pictures, I may get to see Simka while he's in van, with total luck...

It's being reported on Facebook tonite he is already in town.
His group being
trained in advanced neuroimaging/diagnostics by the UBC team and
Dr S teaching his expertise. Sounds really constructive.

By the way the staff told me some of the techs are travelling
to Italy for the Escoate training in March.

This kind of news inspires a woooohoooooo!!
Not very professional but..honest
Thanks, Mangio