This Is MS Multiple Sclerosis Knowledge & Support Community

mohzi wrote:Not of offend anyone, but it would serve all of us better to shoot the message and not the messenger.

Great point, Mohzi...like I said, I'm not a doppler person. I just research...and apologize to any who may think pharmaceutical sponsorships are not an important part of the dialogue.

Dr. Zamboni could answer this, so could Simka and many others using the doppler protocol. Let's hope they do!
cheer

"This study is not a placebo controlled trial."

this is real criticism not hysteria.

OK....I'll remove the posts.
nevermind
have a great day!

No Cheer-
PLEASE REPOST YOUR IMP INF THAT YOU UNWISELY REMOVED. WHY ARE YOU SUDDENLY BECOMING THIN-SKINNED?
we need this info--it is one more step in unravelling the intricacies of interpreting the info we get--clearly, we have to wade thru incredible biases of many of the professionals involved, and this is difficult to do alone; we need postings like the ones you deleted.
--and this is teaching us WHY we have to be careful, and then HOW to be careful--in making sure we ALWAYS become aware of possiblity of any hidden agenda (AND this hidden agenda search goes all ways, needs to be applied to those "revered" on this site also).

And thanks thisAlex for posting this! Hope you post also on Sclafani's thread--his take would be very important.

.

I agree. We gain more by being critical than with a Pollyanna attitude.

I'm just miffed that I missed reading Cheer's posts.

really I was going to start a thread on 'seeing the other 40%' that buffalo left out. They say they left it out because they didnt have sensitive enough instruments, but Im not sure. Maybe they dont see all the membrane and valve stuff because it is not there.

the most obvious criteria for an occluded vein is the absence of Doppler spectrum, which is not included in the 5 criterias.

I think this is the technique aimka used on me?

Really Im booked in poland june 8 so now is not a good time to disbelieve. Im trying to get a good placebo effect if nothing else.

reading the translated report was a challenge .... on top of understanding all the medical lingo .

I seriously doubt Dr. Zamboni and the other CCSVI experts have the time to answer each and every critic of his study. As the saying goes ....the bushes are full of them .

From day ONE ... Dr. Zamboni has invited the medical establishment to review his research findings .... and see if they can duplicate and validate his great discovery.

And that is exactly what is happening.

It is my understanding that numerous QUALIFIED MEDICAL PROFESSIONALS have travelled to Ferrara Italy to be trained in CCSVI investigation procedures.

Like many others .... I look for the science behind any claim . And with my limited medical knowledge ..... I accept Dr. Zamboni's research.

But more important .... so do many QUALIFIED MEDICAL PROFESSIONALS

The CCSVI discovery stands . As does the solution .

Other than this post ..... I would not waste one minute of time validating the opinion or qualifcations of some obscure person looking for their 15 minutes of fame.





Mr. Success






[/b]

Look, now they're going to come up with all kinds of circumstantial or other arguments by professionals who say all kinds of things. Dr. Zamboni used Doppler ultrasound as a screening tool. His surgeon and himself then used a catheter, and their eyeballs, to dilate some veins they could see on a screen. I expect to have my veins dilated one day (not too far in the future, I can always hope). If they don't look like CCSVI on the fluoroscope, I'll be interested. I may ask someone like Dr. Haacke, to do a complete imaging of all my neck veins, with 3d and across-the-neck MRI images. Nothing he does will show flow 'live', though. What I think is needed at this point is an inflow measurement to the brain, and an outflow measurement from the brain.

This does not require more sensitivity or less hand pressure. I think it requires a different kind of tool, that measures the volume of all blood going into the brain for a given interval, and the same for all blood returning from it. Through all veins in the neck, and all arteries in the neck. Probably most times this can be estimated from x-rays. I am kind of counting on it, but hey, I didn't take it in University, so what do I know?

Why this is important, is visible to me, on the x-rays posted here. Let's say we speculate, that the first MS attack coincides with collapse or drastic reduction in brain outflow (mine seemed to happen while I was asleep). A kink in a major vein has happened. (Jugulars collapse during the day and are used when you're lying down?) In our scenario, the next thing that happens is that the gene they just found, that's connected to 'MS' and also somehow, to new vein growth, kicks in. My postulation is that new vein growth starts happening and eventually some threshold is crossed in the other direction. That is, there is enough new vein growth to make up for the lost flow. I think this is why although attacks are often sudden, remissions can be slow. It takes time to grow new veins.

Following the story, for a few major attacks or a lot of minor ones, this can continue. But after some limit is reached, the regrowth just ain't happenin' no mo'. I would guess maybe since we're now not getting enough blood to the brain, and whatever made the kinks happen isn't stopping, maybe it's now hitting collateral veins. So as with MS, I guess we get worse, maybe more slowly, because collateral veins are small. Perhaps by now lots o' damage has been done.

So then maybe there are two options:

1. Replace all the drainage veins with a few plastic tubes like my brother had in his jugular for 45+ years. Not preferable, but probably plenty good for geezers like me.

2. Dilate the veins, with stenting if the kinks come back.

Do I have that wrong? I don't care if a bunch of people want to fight over drug dollars. Just not on my time. I have only so much left, you know?

The right to life includes consenting medical treatment. I want my freedom back. Pete Seeger, I've never asked you for anything, but your inspiration would sure come in handy about now.

Step By Step

Step by step the longest march can be won, can be won
Many stones can form an arch, singly none, singly none
And by uni0n what we will can be accomplished still
Drops of water turn a mill, singly none, singly none.

From Ruthie Gorton, from the preamble to the constitution
of the United Mineworkers of America

Thanks, Pete. Help me you stones and water-drops.

MrSuccess wrote:reading the translated report was a challenge .... on top of understanding all the medical lingo .

Hey Mr success,

could you please correct the report i have translated? english is not my nativ language. i'd appreciate that, thanks

I think theres always a need to learn new things, especially in CCSVI which was brought to the doctors by patients.

alex

thisisalex - thanks for the invite. Sadly , I do not know one single word of Hungarian .... other than goulash ..... which means ...mixed up ....all thrown together .... nothing specific .... ironic huh ?

I see you post from Hungary . As is your expert. Enough said.

Alex - pay attention - Dr. Zamboni has invited the worlds medical experts to review , study . and try to duplicate his amazing research in CCSVI.

One by one , QUALIFIED MEDICAL EXPERTS have joined Dr. Zamboni in CCSVI research ..... some have expanded on his techniques .....and have reported wonderful outcomes.

In this big world of ours .... some countries are considered to have superior medical systems . The people working within these systems have to qualify themselves to practice . The bar is set quite high. And we benefit from this high standard.

To name a few . France .... GB .... USA .....Canada ..... Australlia .... and so on ......

Not to insult you ....or any people from Hungary .... but it is my understanding that Hungarian medical professional creditionals are not
accepted in G8 countries . In order to practice medicine .... immigrant doctors must retrain to a higher standard.

And this includes your man.

Never heard of anyone flying the world to Budapest for special surgery ..... New York ...yes ... London...yes

Alex - focus on the research and studies of top notch medical professionals that work within established medical systems.

The other stuff is mere ..... goulash



Mr. Success




[/b]

.

MrSuccess wrote: Not to insult you ....or any people from Hungary .... but it is my understanding that Hungarian medical professional creditionals are not
accepted in G8 countries . In order to practice medicine .... immigrant doctors must retrain to a higher standard.

ahhhaha
Mr. Success, this place is not for talkin about Hungary or the hungarian doctors, but please try to imagine the world without the hungarian inventors:


this topic is over for me

I think i have found something. dr. Panczel uses numbers like:

Criteria Nr 1.
...
It is normal to find reflux for 0,22 - 0,78 sec in the IJV in a healthy person.
...

i researched these numbers and have found them in this paper (which paper is referenced by Zamboni itself)
http://www.ncbi.nlm.nih.gov/pubmed/1557 ... t=Abstract

During a pressure-controlled Valsalva maneuver, valve closure was monitored by color duplex. The duration and the peak velocity of retrograde flow were determined.

... later...

The duration of backward flow in competent valves was between 0.22 and 0.78 seconds

So, these numbers were measured during Valsalva maneuver, which is not true for Zamboni:

Flow was assessed during a short period of apnoea following a normal exhalation, and never in a forced condition such as the Valsalva manoeuvre (Zamboni)

http://jnnp.bmj.com/content/80/4/392.full

I think it is a problem, comparing number with and without Valsalva. What do you think?