This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi All,

I am trying to decide my next action and could use some advice. I am wondering what is the feeling about whether it is important to do the full Haacke Protocol testing or if the doppler ultrasound is enough. For the full testing I would go to the clinic in San Diego and pay $2900 out of pocket. Alternatively, I could fly to Toronto (from Los Angeles - I am a Canadian) and pay $300 at the Dixie Ray clinic for the doppler ultrasound.

Another choice would be to wait until something happens in here in LA - this is not a terrible choice as my symptoms are well handled with diet/chiro/massage etc.

Any advice appreciated!

I'd hate for you to spend extra money but I would suggest the full testing (MRV / MRI)

Doppler does not always show everything, even when it is done by the protocol.

May I ask which clinic in San Diego is performing the full testing? You can PM me if you don't want to post right in the forum.

Hi 3 girls,

I respectfully disagree with ndwannabe. Many doctors including my neuro and vascular surgeon are saying that the MRV is a waste of time and money.

A well done color doppler ultrasound is your best bet. Just know that there is still a high rate of false negatives, and numbers that show lower pressure and reflux than what is found once they get in with the venogram.

Frustrating, I know, but for now it's the best we've got.

Best of luck, Nicole

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Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

The clinic in San Diego is called "The Hubbard Foundation". I just learned of them a day or two ago. They are only doing the testing, not the procedure. I understand that the doctor's own son was diagnosed with MS.

Thanks for the opinions.. keep them coming!

I just saw on the Hubbard Foundation website that the cost is actually $2500. I must have misheard the guy on the phone yesterday.

Usual disclaimers: not a doctor, not responsible, nothing authoritative. Just my own personal knowledge and opinion.

The gold standard is the venogram, invasive and usually used in this type of surgery. The doctor watches while dye is placed in your veins, on the display of a 'live' x-ray machine. The same machine will be used for stent placement, if done. The Doppler, very non-invasive, is now being called screening, but most expect that a problem will be found with Doppler and/or the MRV, bad enough to justify Liberation. They usually are found. But I'm sure even experienced Liberators will look at all test data you give them, and likely find it useful. I have not heard of a vascular surgeon saying they need them.

I think people in this field know, we are getting close to knowing all we need to know, about this disease from the patient's view, so tools and devices are being developed at this moment. More testing is needed to really get to the bottom of this phenomenon. Thus the emphasis on testing, from the researcher's view, and the tendency to leave the needs of the patient behind. The ideal thing has not been made yet: a machine that can measure 'flow' like the Doppler, with pressure, direction, velocity, composition (whether the blood is venous), with the ease of use of the venogram, and somehow 3D operation like the 3D Haacke MRV.

A consumer version of 3D for the movies is available now. Perhaps this technology can be used. But now we are really getting expensive, and disease prevalence of MS as it is currently known, may never justify it The SWI should ideally be used as well, or some other means of assessing iron deposition. Prof. Haacke is also the inventor of SWI, a type of MRI which can display brain iron deposits. This would be very useful for treating iron deposits, if they could be treated, by chelation for instance. They are likely to be a problem for progressive brain and spine damage. I'm sure there is a lot more to this story, but that is my understanding. Dr. Zivadinov has also published quite a bit on a virus which is thought to be involved in the immune attacks: Epstein-Barr, which is very common. All tools are useful for this research, but it is not necessarily aimed at treatments like the Liberation.

It's better to give than to receive
Except when it comes to free advice, I believe
-Bruce Cockburn, Tie Me At The Crossroads

OK, I admit it. I thought MRV *was* venography

I apparently was mistaken...

So I guess the proper term is "venography" and it's not the same as MRV, huh? This is what I was trying to "recommend"

Anyway, after hearing "nothing's wrong with your veins dear" from a non-CCSVI trained doctor who did a Doppler and the CT scan with a dye, I think I would go for a full test.


I suppose if the doctor knowledgeable in doing the Doppler per protocol can be found - this would be a good option. I, unfortunately, could not find one.

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I agree with ndwannabe - is there a difference between "MRV" and "venography"?

Thank you so much for your help.

not in principle, if you are not operating. i don't know what contrast is used in the MRV, but if there is one, it has to be put in your veins. Don't know what the differences are, but they make one more 'invasive' than the other. MRV is done by scanning you with an MRI machine. Venograpy is a moving X-ray.

Dake's MRV protocol on a lowly 1.5T machine was good enough to dx and treat 65 people, irrespective of the doppler results which were mostly negative.

65 people disagree that it is a "waste of time"....

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

nd - I'm in the same boat. I did an ultrasound but everything came clean. So I'm now scheduled to go at the hubbard foundation.

The problem with the venogram is that no doctor will do it (at least the ones ive talked to) without first a diagnosis of CCSVI. Although there is a minimal risk with it, it's still a risk most doctors won't take without further evidence of CCSVI/MS connection (regardless whether that's wrong or right, it's reality.) So before a venogram will even be considered, you need a CCSVI diagnosis.

On a side note, I wonder what's more risky, a venogram to confirm CCSVI or a lumbar puncture to confirm MS? My neuro insisted on an LP despite the fact I had numerous lesions. In hindsight I wonder if that was even necessary.

Here's a quick primer on the different types of angiography, you can subsitute the word venogram/venography for angio (ANGIO = arteries, VENO = veins)

Angiography uses one of three imaging technologies and, in some cases, a contrast material to produce pictures of major blood vessels throughout the body.

Angiography is performed using:

- x-rays with catheters
- computed tomography (CT)
- magnetic resonance imaging (MRI)

In catheter angiography, a thin plastic tube, called a catheter, is inserted into an artery through a small incision in the skin. Once the catheter is guided to the area being examined, a contrast material is injected through the tube and images are captured using a small dose of ionizing radiation (x-rays).

1eye is right, a venogram (meaning a catheter venogram) is the gold-standard for evaluating veins. It is done with a puncture in the femoral artery in the thigh, and a wire and/or balloon is threaded up to the veins in the neck. the doctor watches your veins under a "live" xray. The type of dye used for venography is very different from the type of dye used in MRVs.

xray venography uses and xray dye that could possibly result in a severe allergic reaction. MRVs use a type of contrast dye called gadolinium which has a much lower possibility of allergic reaction, although people with compromised kidney function should not have either type of dye. And unfortunately, they aren't interchangable!!

for more info: http://www.radiologyinfo.org/en/info.cfm?pg=angiocath

None of the two are risky. MS can not be confirmed (yet) by showing CCSVI. The clinical world does not accept CCSVI as link to MS at this moment.

A lumbal puncture can show several indications for MS, like protein and the presence of oligoclonal bands in the liquor. A lumbal puncture can cause a severe headache the next 3 - 5 days (I had one for 5 days).

A fine story about this is told here: http://www.suite101.com/blog/daisyelaine/diagnosing_ms

I completely disagree. While they are not VERY risky, there is still SOME risk. Keep in mind that in this discussion we are weighing the risk of doing procedures against NOT doing the procedures. Thus, there are certain risks with LP (including serious risks such as infections) which even if they are very low, like 1 in a million, the risk is still higher than 0.

I'm scheduled for may 20th at Montreal (doppler) but I would not be surprised if they detect nothing since I have a mostly benign MS course, after 6 years except little numbness in my tongue and absolutely no fatigue I guess I should not have CCSVI (unfortunately).

I'm eager to see...

Marc

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RR:2004 EDSS: 0 COPAXONE since 2009