This Is MS Multiple Sclerosis Community: Knowledge & Support

I pulled a couple of Court's MRV pics, was curious if they look as strange to you as they do to me. from a side angle you can see a clear pancaked section, on both sides, and from a front angle there are corresponding dark areas. There also seems to be a whole lot going on there, what look like collateral veins but I just don't know for sure what I'm looking at. Anyone have an interpretation for me?

Hi Johnnymac,

Thanks for reminding of Courtney's name. "Your beautiful wife" is very fitting, but I was afraid it might seem facile.

The MRV pics - sure look like stenosis high in the jugulars to me. That dark "band" at what seems like a crimp, indicates very little blood passing through (to my untrained eye). The gadolinium contrast lights up the blood-flow, and that should be bright-white all the way through, in my understanding. All of that other looks like collaterals. My own, worthless hunch, is that Courtney has azygous involvement too.

Could you try sending pictures (or the DVD) to Simka, or Zamboni, or Dake, or Sclafani, for a 2nd, 3d, 4th opinion?

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My name is not really Johnson. MSed up since 1993

I see the pancaked areas as being in the range of Atlas and C1--and would explore getting Atlas and C1 checked by chiropractor to see if rotated--if they are, easy (but only with a chiro trained for this) to un-rotate these crucial neck bones. Once in alignment, the impingement on the veins stops.
http://www.youtube.com/watch?v=2Ae5CHyS ... re=related
this video details what I am talking about, but an experienced chiro can do the manipulations that the machine does in video.
I had it done, and immediate relief and immediate leaps for the better in every paradigm.

I believe it may be a twist

I hate to rain on anybody's parade, but I'd like to reiterate some things that I've stated before on other threads.

According to the radiologists at the National Institutes of Health, MRV technology is notoriously unreliable, and is seriously prone to artifacting and false positives when looking at venous flow. They actually refuse to use MRV for blood flow diagnostic purposes at all, no ifs, ands or buts.

Dr. Sclafani, who did my liberation procedure, has also commented that the MRV's that his patients have brought him have borne very little resemblance to what he's actually finding when he performs a catheter venogram on the patient.

Furthermore, Zamboni and Simka have stated that stenosis seen high up in the jugulars is often false, and is usually only relevant if there is stenosis lower in the vessel.

My original CT venogram showed a very high stenosis in my left internal jugular, but when Dr. Sclafani actually went in and examined the area he found it to be quite normal. Of course, he also found stenosis that the CT venogram did not pick up lower in my right internal jugular, which is further proof that the imaging techniques currently being used to try to identify CCSVI are seriously lacking.

Dr. Sclafani is actively trying to find an imaging technique that he can use to follow up on the patients he performs his procedures on, but has so far been frustrated in that effort. As of now, though, I believe his thoughts are that the only way to actually see what is going on in the CNS venous system is to get a catheter in there.

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Marc
www.wheelchairkamikaze.com

Hey Marc, I definitely haven't forgot what you've said about MRV reliability. Here are measurements from both jugulars on an ultrasound (actually from the lower neck area). The frustration on my part right now is our IR doesn't want to move forward with a venogram. I think these images (MRV and Ultrasound) show enough evidence to warrant going in and really checking things out properly, but we're stuck at this point on getting a venogram done.


Left IJV normal:

Left IJV w/Valsalva


Right IJV Normal:

Right IJV w/Valsalva

What Marc said about Sclafani saying mrv doppler unreliability is exactly what he said to me. He told me veins looked like crap on the mrv but when he looked with the ivus from inside they looked completely different albeit still like"crap" Babara

Just to hammer this one home..when Dr. Dake looked at my MRV he saw one definate and one possible stenosis. When he got in there he ended up finding three areas. (And my EDSS is very low)
You need to find an IR with some cajones. Good luck, I know you won't give up.

Also, I noticed that Dallas has roughly 19 IR's wheras Houston has 33 and San Antonio has 27. That's a lot of doors to knock on, but you might just get a better reception.
Heather

Thanks for sharing, Johnny....the pics are incredible. As I'm sure you realize they are part of a very complex story.

Venography is the only way. Once inside, Dr. Dake confirmed Jeff's high pinching of the jugular veins. His lower jugulars, valves and azygos were perfect. Jeff had 2 following venographies to clean up restenosis in the high area, and they showed the same reality. EVERYONE is different. Which finally explains why every MS patient presents with different disabilities, lesion loads, and progression.

Dr. Dake did not just treat high jugulars, and I am becoming really tired of this mythology being perpetuated online. He treated many different forms of stenosis. It just happens that Jeff went first. And Dr. Zamboni confirmed with me and Dr. Dake in the month between Jeff's MRV and venography that he had patients who had presented as Jeff did (with high jugular stenosis and LOTS of brain lesions- Jeff had over 20), but he did not find a way to treat them which lasted. Jeff and I are thankful that Dr. Dake treated him. He is awake and not progressing and we take a day at a time. There is not one pattern of CCSVI. High jugular blockage can present on its own (due to outside muscular or bone impingement) without lower venous involvement. The consistent is the fact that only once inside, with the catheter in the veins, can the areas of stenosis be located and repaired.

Doppler, echo-doppler, transcranial doppler, MRV are only indicators. They can be good indicators, but they are not precise. Everyone is different. I will say this again. And I thank Dr. Dake for treating my husband.

I am extremely uncomfortable with patients and doctors making diagnoses online. I have always said, if at all possible- go local and visit a doctor you trust, who will take the time necessary to deal with your specific case.

Court may have lower venous involvement, but that will only be clear once the venography is done. Wishing you both the best and some answers, Johnny.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Thank you Cheer.
I too only had high jugular blockages. These were seen on my MRV, so in my case it was correct. No lower stenosis for me. My improvements have been life changing. I am 5+ months out and I'm enjoying all of my new energy and strength!

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Dr. Sclafani is rather direct in saying how he views this:

What I am getting from Dr. Sclafani's thread is that if a person has been diagnosed with MS, that person can be assumed to have CCSVI, and a venogram is the best intervention -- go right to it.

So the issue is -- can you just go straight to a venogram? Do you need any other test (MRV, doppler,) first?

That certainly would save us some time and some tests.

Going straight to venogram is not the way the doctors work. The vengram is the definitive test and although it is minimally invasive, it is still invasive and is not a simple diagnostic test. It comes with risks. There needs to be at least some suspicion of ccsvi.

Keep knocking on doors with Court's mrv and you'll probably find an ir willing to take it to the next step. It will pique someone's curiousity. Mine piqued Dr. Sclafani's enough for him to dive into this. My venogram from Buffalo was nothing like my mrv, by the way.

It would be a real paradigm shift to be able to just go straight to the venogram, wouldn't it!

Best luck to Courtney getting a doctor to work with you on addressing the issues.