This Is MS Multiple Sclerosis Community: Knowledge & Support

I apologize if this specific question has been discussed, I know that the doppler procedure Zamboni uses in CCSVI is very specialized and it would be a waste of time to have someone local do it who has no idea what CCSVI is about.

But with that said, aren't all MRV's basically the same? Meaning IF you can persuade your doc to refer you for one locally (I'm in the US), wouldn't that show a stenosis or blockage just as well as having one done in NY or Detroit or CA?

Just curious if there is a final verdict on this. I'm about *this* close to just paying for one out of pocket to find out once and for all if I have screwed up veins causing me so much grief. After that, I'm not sure what I'll do but I just want to KNOW. And I want to know now. There are numerous MRI machines within a 10 mile radius of me, this shouldn't be so darn difficult.

However, I don't want to waste the money if there really is a difference in MRV techniques between those in the ccsvi loop and those who aren't.

Thanks for any insight. This website is fantastic!!!

SaintLouis,

My neuro asked me TODAY if I wanted him to prescribe an MRV for me !!! Since I am enrolled in Dr Haacke's Detroit study I told him I wanted to wait and see. Did I really say that !!! Or am I just afraid an MRV will show nothing . Maybe I will change my mind again tomorrow, LOL.

If you can convince a doctor to prescribe an MRV for you and you want to do it, give it a shot !!

ozarkcanoer

SaintLouis,

I do know that there is 2D MRI/MRV, but also 3D. From some of what I have read and seen, a flattening of a vein might not be obvious as stenosis in 2D.

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My name is not really Johnson. MSed up since 1993

Johnson,

That is my dilemma. I couldn't take the emotional letdown if I had an MRV here in St Louis and it showed nothing. I'm pretty bad off emotion-wise the way it is. I know that Dr Haacke has specific protocols for his MS-MRI testing that I am counting on. But Dr Haacke also has a disclaimer that if nothing shows up on his scans, then the acid test is the color doppler ultrasound.

So what way is the best way ? Someone posted once that we need to clone Dr Zamboni, Dr Simka and Dr Dake. Can we arrange that ?? LOLOL

ozarkcanoer

This is slightly different, but one of the people here who'd had stents mentioned that you could kind of see collateral veins on his conventional MRI.

Thanks for the replies, the 2D vs. 3D is definitely food for thought. I'm in the same boat, if it shows nothing amiss with my veins I will be a)shocked and b)very upset. So I don't want to risk a false negative (not that I want a false positive, but you know what I mean).

I wonder if there are any neuro's in St. Louis or KC who perform/oversee dopplers on stroke victims? In another thread someone mentioned the technique was very similar.

Did I read somewhere that the MRI machine needed some sort of a software mod to help highlight what they search for during an MRV?

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

Okay, I found a hospital in NY that does the 3d imaging (NYU Lagone), but do I need it with or without contrast? Does anyone know? I just made an appointment for next week and I wasn't sure if I have the right info on the script. Anyone?

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Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..

Mine was without. Don't know if that is standard practice though

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

All the ones at Stanford are with contrast. You get sent in with an IV hookup. Mark.

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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

Great, thanks Mark! I've emailed my Neuro asking for an amended script and will be going on 12/30 to get the MRV done. I will make sure to let everyone know how it goes. I'll also post the images online so the TIMS "experts" can help me read them. I've actually located a local hospital that does the 3d MRV's as well, so I won't have to travel to NYC (not that I would mind AT ALL). I think obtaining an MRV is a great start for all of us that have either have insurance, or the ways/means to pay for one. I've had the script for months, but didn't know what to do with it. Now, I've educated myself enough to at least know what to get, and what to look for. I am beyond optimistic that this will show a malformation. In fact, if I was a betting woman (which I'm not, BTW), I'd bet the farm on this one! Wish me luck and I'll keep you all posted....

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Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..

I was due for my annual MRI this month and my neurologist agreed to order it done as an MRV, too. It was done with contrast. I believe that I read that Dr Simka primarily uses the doppler for the true viewing diagnosis, with the MRV as back up, but I offered it to him for any assistance it might provide. I also get the impression that the knowledge of just HOW and WHAT is to be looked for is where the new skill is to be had. Hopefully, the opportunity to be properly trained will be availale readily! My neurologist wrote off the results and I don't know whether he made any effort to analyze the pictures but I intend to take my CD to a vascular technician after Christmas to get an opinion. Ultimately though, as a entirely new skill, I would have to say that if I were to get a NEGATIVE result, I would still end up wanting Dr Simka, Dake or Zamboni to be the one to say that! Happy Holidays1 Brynn

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41 years old, dx 1998, current EDSS 6.5

Here's a helpful primer , lots of good info.


See all the various veins and arteries identified?
http://www.tosinfo.com/mri/images/mra_ad.html

Note on some of the identifiers just off top of head, add more if you like.

XJ=External jugulars
CC=Common carotids
J=Internal jugulars
BRV= brachiocephalic vein
SVC= Superior vena cava, where the internal jugulars meet and "dump" before returning to the heart.

Mark.

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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

jenf - that's great! Good luck to you, can't wait to hear the results. Could you tell me how you went about finding a 3d machine? What lingo do you use when you call? Is it as simple as asking if they have a 3d machine and that's it?

THANK YOU!

I will soon begin a quest to find one in the midwest.

Hi SaintLouis,
Yes, I just asked if they had a 3d machine... They were obviously a little confused and kept asking if I meant 3T. Not sure what the differences are; I have NO medical background what-so-ever! But, once I explained what I was looking for, they assured me that they have what I was looking for. I made an appointment the NYU prior to reading that they have the latest equipment. Wasn't sure if I should keep the appointment or just go to my local hospital, but after reading posts on TIMS, I'll definitely keep this one. I'll let you know what happens!!

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Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..