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well said EJC.

I agree with all you have said . But wish to add .......

Since Dr. Zamboni has brought his discovery to our attention ....
CCSVI at times .... seems out of control .

I sense Dr. Zamboni is aware and frustrated with this situation.

To remind All : Dr. Zamboni HAS NOT proclaimed CCSVI as the cause nor cure for MS . It is the Media and Overzealous pwMS that are making that premature prediction .

What Dr. Zamboni HAS discovered - is - a vast majority of pwMS .. have vein blockage in the pathway from the head to the heart.

Upon opening up the restricted bloodflow .... SOME .... of his patients reported improvements in their MS symptoms .

Dr. Zamboni thought this to be worthy of further investigation..... and invited his fellow medical professionals to try and duplicate his clinical discovery ..... using his methods .

And we now have numerous medical professionals accepting his challenge. They are reporting interesting outcomes .

This in turn ..... leads to more investigation ..... by more medical teams with the ability to do so.

A collaboration of information .... is slowly being tallied .

It looks like 2011 .... will be a good year .




Mr. Success

patientx wrote:

There are an infinite number of patients with an infinite number of stages of MS, attending an ever increasing number of centres offering procedures that vary in sublte ways.

So straight away you have thousands of possible variables of what may or may not work....
The thing is, right now, no one actually knows who's going to do this right ans who isn't. So it's all a bit of a stab in the dark.

And yet Dr. Zamboni, in no uncertain terms, found cerebro venous insufficiency in 100% of the patients he examined, looking at only 3 veins; that ultrasound was 100% sensitive for detecting CCSVI; that all of the patients he treated saw improvements, at least until they re-stenosed. So, there doesn't seem there need to be any variables, and it's not really a stab in the dark - just do what Zamboni did.

Unfortunately Dr Zamboni can't be all places all of the time. treating everyone......therefore we have human error and human variables.

EJC - for some unexplained reason .... PX is throwing some pixie dust over this thread .

To explain and enlighten :

Professor Zamboni does NOT work alone . He heads up a team . You can research the names on his CCSVI paper . ONE of Dr. Zamboni's colleagues is the NEUROLOGIST .... Dr. Silvi .

It is assumed that Dr. Silvi was responsible for providing Dr. Zamboni with the 65 MS patients ..... to partake in Dr. Zamboni's study .

I suppose Dr. Silvi could have passed off one or two of the 65 test subjects as having clinical MS ..... when they in fact did not ......

Regardless ...... at that point in time ...... Dr. Zamboni , Dr. Silvi ....and the rest of the research team ........ produced a remarkable study document ...... that has opened up a new avenue of research.

So .... yes ..... ALL of the Zamboni 65 had MS . ......100%.....

But how many had CCSVI ? THAT was the unknown .



Nice Try PX.






Mr. Success

CCSVIhusband wrote: Don't give up Asher ... or others. Don't get discouraged ... this IS going to pan out ... it's just going to take a little longer than most would like. Doctors don't risk careers for things they truly don't believe and see ... a lot of doctors are going into CCSVI for a reason (they see it and make the connections MEDICALLY between x and y (x being CCSVI, y being "MS" lesions"), and those doctors are A LOT smarter than most people on this board).

Amen, don't throw in the towel just yet. That's the point here. Remember, we had one on here that threw in the towel after a negative venogram, she's long gone but hopefully is still hanging around reading, there was no IVUS in that instance, it *may* have shown that indeed there were issues that would not show up on the venogram. Sure, after UT and/or MRV and/or Venogram show negative (just addressing as a normal garden variety UT not a transcranial color doppler), I personally would not give up until there was an interrogation via IVUS, though I wish we could ALL have that as a first ditch or concomitantly and not "ruled out everything else let's give this a shot". Let alone if relying solely on UT as an includer/excluder when it comes to dx and treatment. Screening tools are just that, screening tools.

People pulling for other people because we know how this disease sucks for everyone, not because some beautiful sculpted paradigm has been crafted in our minds and we don't want it modified... Let the science fall where it may, that's too far off for most PWMS. For now, do what we can, how we can, with the tools and Dr.s and equipment that is available at the moment, with the understanding that even the best Dr.'s have a significant learning curve as the various pathologies come to light, even now after thousands are treated already...

Operator dependence, skill level, experience, capabilities running alongside dozens and dozens of presenting possibilities, lengths of disease course, lots of different veins affected, valves and the like, YMMV should end every discourse on this subject.

LR1234 wrote: All I know is that I don't feel MSy anymore. I don't think I am cured but feel like I am in a holding position. I have been the same for 5 months.

I believe the iodine contrast and saline fluids put through the system during the procedure might be the thing that is giving people an improvement in symptoms. I am not 100% sure why but I think they are having an affect that does eventually wear off.

I drink at least 2 litres of water a day drinking slowly throughout the day as I really think that helps with blood flow.
I also take thyroxine and keep my FT4 in the higher end of normal plus I take zinc/Vit d/Nattokinase. (plus the thinners)
I am so grateful that I feel so much better than I have done in 2 years. I was relapsing constantly and that has definitely stopped.

LR---You've really been through it, but I think you are onto something very, very important. I recently wrote a thread of hypovolemia, or low blood volume due to dehydration and inactivity (pwMS often have this condition)...we can't expect veins to remain open and flowing if the blood volume isn't there. Dr. Dake was adamant with Jeff about hydration and cutting back on coffee. The endothelial health program, with nattokinase, bromelain, quercetin, curcumin and other fibrin and coagulation regulators has helped, too. This has got to be part of everyone's aftercare.

http://www.thisisms.com/ftopict-15073-hypovolemia.html
take care,
cheer

MrSuccess wrote:EJC - for some unexplained reason .... PX is throwing some pixie dust over this thread .

To explain and enlighten :

Professor Zamboni does NOT work alone . He heads up a team . You can research the names on his CCSVI paper . ONE of Dr. Zamboni's colleagues is the NEUROLOGIST .... Dr. Silvi .

It is assumed that Dr. Silvi was responsible for providing Dr. Zamboni with the 65 MS patients ..... to partake in Dr. Zamboni's study .

I suppose Dr. Silvi could have passed off one or two of the 65 test subjects as having clinical MS ..... when they in fact did not ......

Regardless ...... at that point in time ...... Dr. Zamboni , Dr. Silvi ....and the rest of the research team ........ produced a remarkable study document ...... that has opened up a new avenue of research.

So .... yes ..... ALL of the Zamboni 65 had MS . ......100%.....

But how many had CCSVI ? THAT was the unknown .



Nice Try PX.






Mr. Success

Zamboni looked at five different criteria for abnormal flow in these veins. Dr. Zamboni found that all of the people with MS (100%) had at least two of these criteria, but the healthy people did not. He suggested that this leads to a cerebrospinal venous insufficiency (CCSVI) and that CCSVI causes MS.


Sometimes it seems that the people who are the biggest advocates of CCSVI know the least about the previous studies.

scorpion wrote:

drsclafani wrote:

scorpion wrote:Ok so everyone wants a skeptic thread so we do not ruin the "tone" of the forum and now if you saw no improvements you are relegated to the "Pklittle" thread??? That means the only new threads that will appear on here are ones where the liberation procedure was perceived to have worked and threads that discuss why CCSVI is the real deal?

yes, i agree with scorpion's opinion but not his "drama" about conspiracy. It is right that asher hold on to his thread; the man has earned it.

You have got to be joking.

Don't think he was joking!

patientx wrote:

There are an infinite number of patients with an infinite number of stages of MS, attending an ever increasing number of centres offering procedures that vary in sublte ways.

So straight away you have thousands of possible variables of what may or may not work....
The thing is, right now, no one actually knows who's going to do this right ans who isn't. So it's all a bit of a stab in the dark.

And yet Dr. Zamboni, in no uncertain terms, found cerebro venous insufficiency in 100% of the patients he examined, looking at only 3 veins; that ultrasound was 100% sensitive for detecting CCSVI; that all of the patients he treated saw improvements, at least until they re-stenosed. So, there doesn't seem there need to be any variables, and it's not really a stab in the dark - just do what Zamboni did.

Dr zamboni never reported that all patients saw improvements. in fact there was no statistically significant improvement in the cohorts of patients with spms and ppms, although some of the patients in those groups did experience improvement in quality of life

I am grateful for the open discussion and sharing of information and experiences on this site. I think great strides have been made in the last year.

For 13 years I have resisted DMDs and have yet to make a decision about the procedure. I guess if I had more disability and symptoms I wouldn't hesitate but for now I am taking a risk. I worry about making things worse. I'm trying to learn as much as I can and applaud all these brave PWMS here.

The efforts and tireless work of people like Dr Sclafani are very much appreciated. Thanks for sharing your expertise with us.

As we get further and further down the CCSVI trail .... the original facts and outcomes of the '' Zamboni 65 '' CCSVI study ..... are being either quickly forgotten ....... or deliberately misquoted.

Of all the past and present CCSVI material posted / published this is the most important ....... and is a MUST READ ..... to understand WHY and HOW .... we have arrived today ...... to where we are .

IF .... today is your first day of your CCSVI - MS journey ..... it is of the utmost importance ...... to read Professor Zamboni 's ORIGINAL study and results of the original 65 patients that undertook this historic discovery.



Mr. Success