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I have been emailing a new doctor to do the testing/treatment for CCSVI,
- I was misdiagnosed as negative when i had a Catheter Venogram a few weeks ago

So as i have the DVD's showing the images/xray video of the ct venogram, i didnt see the point in having another venogram.

but i now realise he meant an MRV, which i think is different to a CT MRV

Could someone explain the difference between the two please

I am a little confused, or it may not be me

A "CT Venogram" is NOT a "Catheter venogram". A CT Venogram is basically a 3-D super duper X-Ray (non-invasive, but does involve a HIGH radiation dose), while a catheter is where they physically insert a device into you near your groin, and navigate up through your veins, and release dye and take X-Rays at their will.

When I have spoke to people (ie medical people involved in CCSVI), they say that the catheter investigation on the table is the best, and the CT is more reliable than an MRV (less operator dependent). However, the MRV does not involve any radiation; apart from the injected dye.

oh i thought CT was just an abbreviation of Catheter

So i didnt have a CT Veno, i had a Catheter Venogram

But with the images/dvd of the catheter venogram, what will a MRV show them thats clearer/different to the catheter veno i had?

where do they inject dye in a MRV?

Computed tomography (CT)

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

The catheter venogram http://www.webmd.com/a-to-z-guides/venogram is the interventional radiologists' "gold standard" for diagnosis.

If you have a negative from that, you are most likely negative. That is the best way to see what is going on inside your veins.

What makes you feel that test was negative?

There are people who have been mis diagnosed with the catheter veno, there have been people who have been negative until investigated via ivus. The "gold standard" is just a cute name, it's not God. It should be called "one of the gold standards" or something to the effect that it doesn't necessarily slam the door shut when negative.

Mark.

To get more to your question, the MRV is the dye put in you while you are in the MRI tube. A little longer than a normal MRI, you are sent in with an IV in your arm. At a certain point in the sequence the dye is injected, hopefully at the proper time, while the machine is taking the sequence and capturing your veins all lit up nice and pretty. It has it's limitations though. Make sure they have a decent protocol to run if they don't you can get them one.

And I've never heard of someone getting an MRV AFTER a venogram, but anything's possible these days.

CureIous wrote:There are people who have been mis diagnosed with the catheter veno, there have been people who have been negative until investigated via ivus. The "gold standard" is just a cute name, it's not God. It should be called "one of the gold standards" or something to the effect that it doesn't necessarily slam the door shut when negative.

Mark.

Interesting. I have not heard about others' negative by catheter venography and I have also not heard that the intravenous ultrasound catheter is better.

Granted, I have just been going by what folks like Dr. Scalfani and others have been saying. Dr. Scalfani has also called the catheter venography as the "gold standard", heck, I think the IR website calls it that. But I agree there is no one test for this and a combination is the best way to determine the truth.

I don't even fully trust my single MRV. I will see if I can find the truth when I visit my first IR this coming Thursday...only time and more tests will tell for sure.

gothicrosie wrote:

CureIous wrote:There are people who have been mis diagnosed with the catheter veno, there have been people who have been negative until investigated via ivus. The "gold standard" is just a cute name, it's not God. It should be called "one of the gold standards" or something to the effect that it doesn't necessarily slam the door shut when negative.

Mark.

Interesting. I have not heard about others' negative by catheter venography and I have also not heard that the intravenous ultrasound catheter is better.

Granted, I have just been going by what folks like Dr. Scalfani and others have been saying. Dr. Scalfani has also called the catheter venography as the "gold standard", heck, I think the IR website calls it that. But I agree there is no one test for this and a combination is the best way to determine the truth.

I don't even fully trust my single MRV. I will see if I can find the truth when I visit my first IR this coming Thursday...only time and more tests will tell for sure.

Yeah, it's a cute name, but misleading. Dr. Sclafani is all for IVUS in addition to veno. He said that too. Remember we are in unchartered waters here, taking medical terms out of the books isn't going to necessarily apply 100% since the condition is so variable. Dr. Sclafani himself missed something on veno until he adjusted his methods, if that had been a Dr. without the knowledge of the high variability of this disease it would have been stamped "gold standard said negative", so sorry and out the door you go.

My guess is what Adam had was a venogram. Dye plus xray, no catheter.

Yet another very very good reason to get as educated on this as you can before being tested or operated on.

Adam, did they lay you on the table and stick a catheter up your vein when taking the pictures? That's a catheter venography. If they just stuck you in a tube and took pictures with contrast, that's a CT.

One requires the operating room, the other requires a waiting room until the tube is clear, big difference.

Here's a good thread for everyone to bookmark, I linked the relevant page. Be sure to check out the video too. http://www.thisisms.com/ftopic-11712-da ... sc-15.html

MRV is a MRI of the veins. Not sure where the dye is injected, although I know I've read it somewhere around here.

gothicrosie wrote:What makes you feel that test was negative?

If I remember from another thread, adamt sent his images to Dr. Sclafani who saw some issues or stenoses there.

thank you very much for the replies,

i was on an operating table with a catheter inserted in my groin, it was definitly a catheter venogram

i was negative after a catheter/dye veno, but i showed dr sclafani my images and he said my 'narrowings are consistant with CCSVI, and that he didnt agree with my doctors diagnoses.

before the procedure i spoke to the dr about zamboni and she said she doesnt follow his protocols.

the new dr said he will be following dr Hacke's protocol in the MRV.
Is this ok? or shall i show him something else?

adamt wrote:thank you very much for the replies,

i was on an operating table with a catheter inserted in my groin, it was definitly a catheter venogram

i was negative after a catheter/dye veno, but i showed dr sclafani my images and he said my 'narrowings are consistant with CCSVI, and that he didnt agree with my doctors diagnoses.

before the procedure i spoke to the dr about zamboni and she said she doesnt follow his protocols.

the new dr said he will be following dr Hacke's protocol in the MRV.
Is this ok? or shall i show him something else?

Sounds good to me! I'm just sad because we have had people that were negative other tests including mrv's etc, that got the catheter veno like you, and have since left the site after being told that they failed the "gold standard" and didn't have ccsvi. While there are going to be people that are truly negative for all forms of CCSVI, presuming they've been tested properly with all available avenues by an expert hand, if it was me, I wouldnt' give up until every avenue had been thoroughly explored. I use my own right IJV as an example. 2 catheter venograms did NOT pick up the septum in my right IJV. Granted the left was pretty slam dunk and the collats and stenosis on the right were glaringly evident, so IVUS investigation wasn't really needed or warranted at the time. (remember this was last year and we know tons more now than then). When it was done this time around sure enough, Mr. Septum was flapping in the breeze, causing trouble. That alone would not be enough to cause major reflux and such, so that alone would not be seen as causal towards reflux into the brain and as a contributing factor to my MS, but it sure wasn't helping either. I can only imagine if someone had this on both sides, with no valve in place that was functioning, this could very well be missed and quite easily on the catheter venogram.

What a mess eh?

Just thought I'd report Dr. Sclafani's answer to the question regarding diagnosing options:

"the catheter venogram is the gold standard NOT the diamond or platinum standard, meaning things can be missed. Intravenous Ultrasound (IVUS) and other tests can augment the findings of catheter venography. Also, IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography."

This means there are a number of options out there to diagnose (MRV, venogram, doppler, IVUS) and a number of options to misdiagnose.

There are no absolutes here, we are on the bleeding edge of innovation and discovery with CCSVI.

Patience, understanding, and a willingness to try many different types of tests to find the truth are required.

gothicrosie wrote:Just thought I'd report Dr. Sclafani's answer to the question regarding diagnosing options:

"the catheter venogram is the gold standard NOT the diamond or platinum standard, meaning things can be missed. Intravenous Ultrasound (IVUS) and other tests can augment the findings of catheter venography. Also, IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography."

This means there are a number of options out there to diagnose (MRV, venogram, doppler, IVUS) and a number of options to misdiagnose.

There are no absolutes here, we are on the bleeding edge of innovation and discovery with CCSVI.

Patience, understanding, and a willingness to try many different types of tests to find the truth are required.

Bingo. I dont' want anyone walking away just because one or the other was neg. One is getting treated today, her first MRV was resoundly negative. The second was a coin flip as if anything was there. She didn't give up, and is getting treated tomorrow. Hope to be able to report more later on or she can come in and do it.

Also I think it helps to split up the tests into invasive and non-invasive. MRV's, well I guess the IV is invasive but no big deal. Ultrasound, non-invasive. IVUS, invasive in an operative setting. Venography, same thing.

We're back to the same place as we were last year, without transcranial doppler machines, and properly trained techs schooled in how to conduct the tests needed to detect ccsvi, (and I mean as being commonplace not that that doesn't exist) the screening part will be a patchwork quilt of varying degrees of success in getting scanned. My initial ultrasound was negative but that was early on and with an inferior machine.

Mark.

And to clarify one of my earlier comments (sometimes you reread your own stuff and it doesn't make sense), I don't think the IVUS in this application is used in absence of, or in place of a veno. As Dr. Sclafani says, "augment". That (my statement) kinda read like a one-or-the-other proposition which was not my intention. Unless someone knows of the use of IVUS "flying solo" but I doubt that happens in relation to CCSVI assessments.

My main "beef" is that for the most part, for the laypeople like us, when we hear "gold" in relation to the venography, we think "gold plated, unassailable, don't argue with it, it cannot be questioned, you're done, finished, try other avenues, sayonara". My argument is with the semantics involved. That's all. It saddens me to the core to think that there just may be a possibility that people who received negatives dropped out of the loop when they may, just may be positive after all, and have lost a lot of time in the process, if they ever even look at it again.

Mark