MRV in Chicago

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

Postby mrsilkykat » Wed Feb 24, 2010 6:42 pm

Magnolia,

It's natural to be excited and nervous. If you've done your homework thoroughly on the treatment and the doc and you are convinced he is the real deal, then you have done everything you can for yourself. Relax and focus on how good you are going to feel Wednesday.

We're pulling for you.

I'm still bewildered as to why it is so difficult to get this treatment and why it is so easy to get it! :?
Kat
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Postby Chicagoboy23 » Fri Feb 26, 2010 9:19 am

Hello All,

Well I have been in touch with my Radiologist about scaning other patients. He has said until he is able to provide the treatment, he would rather not do the MRV, for other patients. He has advised that a colleague at one of the teaching hospitals here in Chicago is interested in participating in a Clinical trial. He may be able to acquire some funding, but I do not know the status.
I am a bit saddened that he is not wanting to scan.....but it seems that is the rule with our 'experimental status' within the medical community.

As I said on another post the MS Society funding is not out until June/July so perhaps there can be some news in the Midwest.
I will continue to be diligent in finding helpful Professionals for this theory and treatment to Liberate the real MS Society that is suffering.
Stay tuned...

Mark
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Postby Cece » Fri Feb 26, 2010 11:53 am

Thanks for asking him, Chicagoboy23.
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Postby magnolia30l » Fri Feb 26, 2010 3:25 pm

mrsilkykat, I am confused also. I guess I will know more Tuesday. This guy didn't act like stenting was no big deal. ???
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Postby magnolia30l » Thu Mar 04, 2010 2:46 pm

Well guys, I had an angiogram Tuesday and I am confused, heartbroken, and just don't get it. It showed no stenosis in my jugulars in the brain. He only did my brain though. He said the blood flow was perfect in my jugulars. Even if a stenosis was in my neck, wouldn't the blood flow still be messed up in the brain too so he would've known that something was wrong somewhere??? Now, after more reading of Zamboni's paper, I read that 83% of his patients had stenosis an the azygos vein which is in your chest. Could I have it there and it just wasn't checked? The angiogram was not pleasant and I feel like it was for nothing. Now my MS specialist had already ordered an ultrasound of my neck which is scheduled for Monday that I was going to cancel. Now I am wondering if I should go. I even have a call into the doc to see if they will do the chest to. I don't know if I should go or not. What to do?
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Postby Cece » Thu Mar 04, 2010 8:14 pm

I would absolutely still do the ultrasound. It is worth it for the second opinion.
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Postby mrsilkykat » Thu Mar 04, 2010 8:32 pm

Magnolia, I agree. Get the ultrasound. Get whatever you can that isn't invasive. You can use the scans to take to other IR's & vascular docs.

Definitely try to get the azygous vein. It isn't always easy to image.

I looked back at your posts. I think you had an MRV but you don't say what showed up. What did it find?
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Postby magnolia30l » Fri Mar 05, 2010 8:18 am

yes mrsilky, i had an mrv first and the doc that did the angiogram said there were three places that he saw that looked narrow and that is why he did the sngiogram. he said the blood is moving really good through the jugulars. On to the azygos. Does anyone know exactly where that vein is? I know it is in the chest but does it go into the neck also?
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Postby Algis » Fri Mar 05, 2010 9:15 am

http://en.wikipedia.org/wiki/Azygous_vein

Never forget wikipedia; it's as useful as Google ;)

Hope this help :)
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Postby Donnchadh » Fri Mar 05, 2010 11:27 am

I have found an interventional radiologist in "northern Illinois" who is very interested in CCSVI and have scheduled a Doppler ultrasound for Monday 8 March using the CCSVI protocol. He has extensive experience as an interventional radiologist dealing with other types of diseases, but MS is new area. He has done lots of work on arteries, and varicose veins.

If we can locate the venous problems, he is willing to do the procedure to clear them using a balloon or inserting a stent. I am his second MS patient so everything is pushing the envelope. The ultrasound radiologist said he hasn't done an intercranial ultrasound for years since the widespread adoption of MRI's. He is studying the CCSVI protocol, and plans on following it. They are rather excited about this new field and agreed to explore it.

Cost is up in the air; I am hoping and praying Medicare will cover this!

The doctor requested that I do not release his name just yet as they trying to establish how to deal with a potential flood of new MS patients.

I am hoping they can locate the venous problems; no false negatives!

Donnchadh
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Postby Cece » Fri Mar 05, 2010 12:35 pm

well done Donnachadh!! Am I remembering right that you are progressive but not far along? That seems like the perfect timing to catch this.
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Postby berriesarenice » Fri Mar 05, 2010 3:32 pm

Congrats, Donnchadh! I look forward to hearing how it goes for you. My angiogram is on the 8th as well. We can compare notes monday evening :D
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Postby Donnchadh » Fri Mar 05, 2010 5:19 pm

Cece wrote:well done Donnchadh!! Am I remembering right that you are progressive but not far along? That seems like the perfect timing to catch this.


Well, I have been dealing with PPMS for twenty years now. The symptoms are catching up with me now....perfect time for the CCSVI theory to come along! I told him I would consider the procedure a success if it stopped the MS progression.

I will keep this updated. The doctor is hoping to set up a MS practice for the mid-west if this works out. I told him that if this works, he will be swamped with patients. He didn't know that MS'er's were flying out to Poland for treatment.

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Postby mrsilkykat » Fri Mar 05, 2010 6:11 pm

Magnolia,
I'm just back from a conference with the neuroradiologist at Stanford who oversaw my MRV. He worked with Dake on the stented MSers. I won't go into our conversation here-my IJVs are open on both sides except for some flattening at C6-7 and like yours, my blood is flowing normally--no slowed perfusion.

The azygous vein drains the trunk & flows upward into the vena cava along with the IJVs that drain the head. The azygous is difficult to image. Apparently, ultrasound cannot image it because it is in the chest behind bony structures. The wand from the ultrasound needs to be pressing against tissue to image.

MRV doesn't get it very well--he showed me how my azygous appears on the slices, then fades away--because as the blood reaches the level of the vena cava, the vein turns horizontal and travels in the same plane as the MRV slice, thereby becoming almost invisible.

He said the only accurate way to image the azygous is with venograms. In their experience, none of the patients they venogramed had azygous stenosis. He said he has never seen it. He and Dake do not know how Zamboni determined the azygous was involved in so many cases. I can't remember what their speculation is.

We talked a lot about how Dake and his team feel MRV is the way to go to image the veins, not ultrasound. The NMSS grant they have applied for is to double blind MRV imaging. We also talked about stenting & angio trials at Stanford.

I came away with more questions than I went in with. I feel like CCSVI is more complicated than I ever could have guessed. I am also more concerned for the future of CCSVI, at least in the U.S.
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Postby prairie » Sat Mar 06, 2010 10:11 am

Hope the diagnostic procedure finds something Donnchadh. Please keep us informed.
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