I'm back from BNAC and I have CCSVI !!!

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

Postby pegmegrund » Sat May 22, 2010 2:37 pm

Rose2 wrote:pegmegrund,
I guess the same questions as for ozark.
what tests did they do? No venography? Can you see the status of the Azygos? Will they track you also as you find treatment for your CCSVI.?
Do they make any treatment recommendations? refer for treatment?
Just wondering.
Thanks, Rose ')


Hi Rose,

I think OC might have answered some of these questions...

I've wanted to pursue a local option for a while now. I now know that I have issues with the veins, so I can continue that with a bit more proof. I don't have a specific doctor lined up, but do have a few IRs in my area I've been communicating with.

My outcome is a bit different from OCs. I have an abnormal valve and slight stenosis on the right (this is from the Doppler). I also have deep cerebral vein reflux. That means I meet two of the criteria for CCSVI. However, the MRV is negative... so the stenosis doesn't show, and there are no obvious collaterals like I've seen in the MRV images of some. folks.

I suspect that I have azygous involvement, or possibly other issues causing the reflux, but the azygous is difficult to image on MRV... I've been told and read that the heart and lungs get in the way of a clear image of that on MRV.

So, I know that I have CCSVI, but don't know for sure what the main cause is...

BNAC is recommending a cautious approach. They are not referring or recommending treatment at this time. I knew going in that it was diagnostics only, and I'm glad to have contributed to their research. The results of this diagnostic testing will also be published.

Pam
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Postby Rose2 » Sat May 22, 2010 3:58 pm

pegmegrund,
ok. I am understanding more now. Does Buffalo discount the importance of diagnosis of the Azygos or just say they can't see it? I believe it is true that Venography is the standard for good diagnosis of the Azygos so wondering why they don't include this if getting good diagnostic info for CCSVI relating to MS is the point of their study.
I am not trying to be difficult, I am just curious about the testing.
thanks,
Rose ;)
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Postby MS_mama » Sat May 22, 2010 4:13 pm

good for you, OC... glad you finally got your scans. It will probably make it a lot easier to find someone to treat you... wish you the best!
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby ozarkcanoer » Sat May 22, 2010 5:19 pm

Venography is invasive !! Buffalo is using non-invasive testing only. They want to do large-scale studies like the CTEVD study and there is no way they could easily and cheaply do venography on this many people. Remember that BNAC has no funding other than what they are trying to raise on their own. They have no funding from the NMSS and no funding (as far as I know) from the NIH. BNAC needs our help. Those of us who can afford the BNAC CCSVI testing program are also advancing the science. To me it is a win/win situation. Now I know I have two abnormalities in my jugular veins. That is a whole lot more than I knew before.

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Postby Rose2 » Sat May 22, 2010 7:13 pm

Ozark,
True! True! I just didn't understand what their scope was. Treatment will probably use venography and they can look at that time.
Glad to know you got problems!! Congrats! Rose
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Images

Postby prairie » Sun May 23, 2010 10:11 am

<content moved to new message with images shown in-line>


prairie
Last edited by prairie on Sun May 23, 2010 12:39 pm, edited 3 times in total.
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Postby pegmegrund » Sun May 23, 2010 11:42 am

Rose2 wrote:I believe it is true that Venography is the standard for good diagnosis of the Azygos so wondering why they don't include this if getting good diagnostic info for CCSVI relating to MS is the point of their study.
I am not trying to be difficult, I am just curious about the testing.
thanks,
Rose ;)


Hey Rose,

I'm a bit late replying... OC answered above...

I don't think you're being difficult. I appreciate the question, and it is valid in my case. The issues causing reflux and CCSVI and iron deposition aren't completely clear from the neck MRI/MRV and Doppler. It is possible that I do have an issue in the azygous or elsewhere...


Prairie - thanks for the images. We were looking at mine this morning on the big screen tv. Quite fascinating!
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Re: Images

Postby Donnchadh » Sun May 23, 2010 11:56 am

prairie wrote:Click on the links below to see two images from OzarkCanoer's testing at BNAC.

Here's the MRV image showing the stenosis found high up in the right IJV.

And here is the doppler ultrasound image of a flap found in the left IJV.

prarie


Very impressive imaging. The presence of extensive network of collateral veins is also indicative of CCSVI-doesn't tell you where the problem is exactly but clearly proves there is one.

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images

Postby prairie » Sun May 23, 2010 12:37 pm

Here's OzarkCanoer's MRV image showing the stenosis found high up in the right IJV.

Image

The color mapped version of the image.

Image

And here is the doppler ultrasound image of a flap found in the left IJV.

Image


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Postby ozarkcanoer » Sun May 23, 2010 5:21 pm

I'm bumping this because my husband added pictures from the MRV and the doppler ultrasound showing my CCSVI venous malformations.

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Postby hannakat » Tue May 25, 2010 9:46 pm

I have a question.... When Buffalo put out the offer for self pay testing, I signed up and have recently been contacted about it. However, I have since gotten on the list for Dr. S. I'm not sure if I should go to Buffalo at this point since I will hopefully have all the tests when he is up and running.

My question is, for those of you who are and will be going to Buffalo for the tests, do you plan on trying to locate a local doctor to follow through with the procedure?

Thanks for any insight given!
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Postby ozarkcanoer » Wed May 26, 2010 6:36 am

hannacat, I am trying to go local. There could be problems with stents, restenosis, etc. I feel much more comfortable being 15 minutest away from my medical school.

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Postby Billmeik » Wed May 26, 2010 7:02 am

if you are rrms go with simka

Buffalo is not only going to charge 40% of people for negatives that simka wouldnt return they are using mrv which zamboni recently pointed out as a very bad way to do the imaging.
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Postby ozarkcanoer » Wed May 26, 2010 9:35 am

I'm sorry to have to say this but people are coming to conclusions about the research at BNAC that aren't true. BNAC now has one of the Easote doppler ultrasound machines that they didn't have for their first 500. I didn't waste my money. My pictures from BNAC show that I have CCSVI. Take a look at them. I believe the science has to play out and that is what BNAC is doing. At the risk of being repetitive... BNAC is the only site in the world who is performing blinded studies of CCSVI. It will be their results that will convince the academics. BNAC is in debt because they decided to embark on this research without funding. We must support BNAC.

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Postby Cece » Wed May 26, 2010 10:34 am

Billmeik wrote:if you are rrms go with simka.

Not Dr. Siskin or Dr. Sclafani?

I am rrms. I am concerned that whatever ccsvi I have will get missed.

In some ways it's moot, Simka's not a possibility for me, so it's Siskin or Sclafani...
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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