This Is MS Multiple Sclerosis Community: Knowledge & Support

One thing that bears mentioning in the wake of the great W5 documentary is that many of us have had dopplers that were normal appearing to people trained in the regular way.

The w5 show seemed to represent the dopplers via the interview that was in the main airing that the dopplers are easy to do and we can all just go to any radiology lab and get the sonography done, which is not true.

Dr Zamboni says in the extended version that any interested radiologist should do the full testing on 100 normal people and only then look at a person with MS--he claims such a prepared person will then immediately see the blood flow issues in the MS patient. He is not claiming that a doc can look at an MS patient with sonography tomorrow and see what the Zamboni research is talking about.

I believe that if a person goes to a random testing facility and just has dopplers done by a person who has no such background but only the usual doppler background they will see what they think they always see, which is nothing unusual.

It will not help much if 80% of us get bad diagnositics and the word about that goes out that this is not panning out--when in reality it is a lack of skill and dedication to finding the abnormality.

You have to believe this is there and make an effort to find what he is talking about ..........

not be a person doing the dopplers in the usual way and interpreting them in the old paradigm and expecting to prove this is not a problem.

that just will not be helpful.

I happen to know of a neurologist who is questioning this work and this person claims that probably Zamboni and Dake are "over interpreting" the scans. In other words he says they are looking at insignificant stenosis and claiming it is important and treatable.

I think as patients we need to be a lot more concerned about under interpreting.... trying to claim that there is something there but it is not of any significance and it should be ignored so we can get back to our immune suppression strategies.

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Here's my own doppler story:

Joan started this thread in Dec of last year and I was interested immediately in the model. We all were trying to find people to do dopplers. The first person to get some done was Cure or bust, I hope he posts his experience.

I was the second person to get dopplers done at my local university. I convinced the head of vascular surgery at the University of Washington to do them for me based on the Zamboni research. He had his sonographer study the work and do the scans then he interpreted them.

They discovered turbulence of the vertebral veins and that was all. They were done with me--nothing deemed critically important was found by their standard though they acknowledged something was going on.

Then Jeff had very complete scans at Stanford which included MRV/MRI and coronal views of the neck on Dr Dake's orders. They also did dopplers. Jeff's dopplers were normal but the coronal views of the neck clearly showed severe narrowing of the jugulars, and the MRV showed very marked narrowing of the area as well as extensive collateral circulation, so they set up surgery.
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Joan asked Dr Dake if I could come to Stanford since I had dopplers showing something ,but no treatment available. Dake said Yes.

My MRV/MRI was identical to Jeff's My jugs were 80-90% blocked-mere slits when they should be the size of my thumb, half an inch in diameter. I, too, was set to have dopplers to see if we were seeing anything that way at Stanford.

Dr Dake carefully explained to the sonographer what we were looking for. She was VERY dismissive and claimed before we even started that blood goes up and down into the head all the time because it is a valveless system and it is meaningless. This whole idea was in her view absurd. Sure enough she said my dopplers were completely normal. She did not even see the vertebral vein turbulence that the UW did. I told her I'd already had an MRI MRV that morning and that I had severe stenosis at the angle of the jaw above where her transducer could scan and she said--I kid you not--that I could not have such a stenosis because if I did she would see turbulence and she did not so it could not be there.

There is no way a doppler interpretation is superior to a clear MRI MRV scan.

SO I just wanted to make sure that this information that those of us who have been here for the last year already know is fresh for the newbies because it is a vital piece to be aware of IMHO...

If we, as patients, are going to demand treatment we need to make sure that we demand good diagnostics that advance the work, not something that will bog it down with negative data that is incompletely and poorly done.

Imagine that "Somebody's" MS society says ''let's get Local Radiology to do scans on 20 people and see what we get...'' and what they get is nada. we can see that is just going to fuel the idea that this needs years of study, and we don't need that. We need conclusive data now that can't miss someone like myself with a false negative doppler when I really had severe stenosis.

We need to demand that these tests not just be done, but that they be done RIGHT!!!

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

herein lies the problem.

Perhaps having Certification in Doppler CCSVI testing , will solve this roadblock.

Let's hope the people at Jacob's can provide the expertice needed.

The hurdle to overcome ...as usual ... are lousy know-it-all attitudes as mrrhodes40 endured at Stanford ... of all places !!






Mr. Success

Yes, and I for one was glad to have advanced knowledge of said sonographer before going in, otherwise it would have been a "nothing to see here move on people" kind of feeling. I will say she was professional in her approach, and kept the naysaying to an absolute minimum and even then only when I prodded. It's just how us humans are, we see same veins every day for years, then bam, here comes someone saying they are different requiring surgical intervention, but look like the last 999 people you did.

But the main point here that you so eloquently stated, is that even the most experienced sonographers like her, "been doing this for years", and on thousands of patients, is not going to see what needs to be seen in the way it needs to be seen. This is what has bothered me the most about what is arguably the easiest , cheapest and least invasive method of covering the most people in the shortest amount of time. Argh!

Would sure like to know what Jacobs is doing different in their approach. Do we have anything hard on that??? We also need more advanced Ultrasound equipment like they have in Europe. That could also be a factor in the see/not see department when it comes to there vs here...

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

Dr Simka's paper explaining how to do the dopplers (link on research thread) is a resource but someone still took that to a sonographer and got the usual "normal " verdict, darn it! I suspect they did not try that hard to find the issue. It'd be great if we had something hard on the JNI difference!

We need a movie showing how to do dopplers correctly with the pitfalls outlined by the experienced person for the watcher.

At 9 grand for MRV MRI, and 500 bucks for a doppler it is a no brainer that the doppler skills need to be developed.

I believe that I read that JNI plans to train people how to do it correctly

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Word. I think I read somewhere that our UT equipment is basically junk next to the Euro variety, but even junk can be utilized to it's fullest. Don't need a 7 Tesla MRI, Dr. Dake uses 1.5 no problem. Would be nice to have 3's a 4's on every corner, but at least the 1.5's are do-able.

With all of our advances you would think we would have the latest and best ultrasound equipment all over the country.

Yes, we need to find out the JNI angle so we can bring that information locally, there has to be something we are missing here. Or it's right under our noses and just aren't digging hard enough lol.

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

I think the doctor who is doing doppler must know certain tricks.
Dr. Simka knows the special tricks.
I think it is a question of training of the tricks.
It looks so simple when Dr. Simka or Dr. Ludyga makes the doppler.
I am not that blind, I can also see it.
Slovak doctors do not want to believe me when I tell them that even doctors in the US have problems to do the doppler.

The training must be organised - I think.
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Interesting. I wonder if Dr Dake also over interpreted the big drop in pressure gradient across all of my stenoses when the stents went in.

I was going to ask about that very thing, glad you brought it up - Dake measures pressure gradients on each side of the stenoses, correct?

Do people have those numbers? There is a skeptical cardiologist posting in the Globe and Mail comments, who is convinced this theory is baloney because 1) it would take "eye popping" back pressure to damage the brain/BBB, and/or 2) Zamboni's research doesn't report on the simple pressure gradient testing.

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Was hoping to have some research/results to put out there for him. He's also a blogger who is going to feature CCSVI on his "Medical Myths" blog soon:

http://medicalmyths.wordpress.com/about/

Zap, I do think we have those numbers - - at least mine is in the report I got from Stanford. Some of us discussed it in another thread at one point also. I am having trouble finding the comment that the cardiologist made as there are so many thoughtfully dissing him now when you click on the link

I am wondering what he thinks constitutes "eye popping" back pressure?

And I also am wondering what GiCi has to say about this...

I will try and find that other thread or go back to my original report.

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diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri

Yes it does. I am so tired of these know alls who know nothing! This person is going to hold forth as an expert when he has made no effort to become familiar with the data? How absurd.

From the December '08 paper

Also based on what evidence does he say with certainty that it takes "eye popping pressure" to cause brain lesions? WHO SAYS? What research papers make that a fact? Geez....how depressing we knew these guys would come out of the woodwork but I am surprised a cardiologist feels that he is the one to judge and thus jump on the "squash it!" bandwagon. Man!

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

My pressure numbers were in the letter Dr Dake sent my PCP. The numbers are 6, 5 and 4 for the 3 stents (I don't remember the unit of measure right now). I also posted that info in the tracking thread. I don't have any idea if those numbers represent "eye popping" pressure or not.

mrhodes... I can see YOUR eyes popping, LOLOL

ozark

There there was a Czech doctor in the room observing my doppler investigation when I was there and it seemed like they were doing some training. I'd love to know what exactly they saw if anything.

Thanks for bringing this subject up again, Marie.
I think it bears repeating, since there will be many neuros and pharma companies coming forward to discredit this research, and doing cursory doppler tests is one way to do just that (not to give them any ideas, but let's be honest...they're getting ready, and we have to be, as well) This is why the MRVs, oxygenation tests, pressure numbers and SWI MRIs will be SO important in the future. The entire picture of CCSVI is undeniable.

It also bears repeating that the Zamboni protocol uses transcranial doppler technology, and Stanford and other diagnostic facilities are not set up to do that. Turbulance that might be missed on neck dopplers could be going on up ABOVE the stenosis, thru the jugular foramen and into the brain. The drainage below might look fine, but the damage from the stenosis is going on above what the neck dopplers can see.
Thanks, Marie. We're so lucky to have you here as a patient, and medical professional!
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