This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.prnewswire.com/news-releases ... 03122.html

Ok we're not going to catch up with Japan with those numbers (annual 9% growth), but it's still a good thing to see more IVUS units getting into the operating rooms of more doctors. With any luck some of those doctors will be CCSVI doctors.

adding costs to the already " pricey " CCSVI treatments , might not be the direction to be going. Lower costs and reduced risk of injury .... are my desire.

Ivus sounds interesting enough ... but .... I'm not convinced of it's value. What does it do ? Illustrate the shape of the internal vein ? Round , oval , square

One of the Laws of Hydraulics is that regardless of whatever size and shape a vessel is .... the pressure [ Pressure = resistance to flow ] remains equal.

CCSVI is founded on FLOW .

Show me how to measure bloodFLOW.... INTO the brain ... and then .... OUT of the brain , and then you have something.

MrSuccess

Mr. Success,

If you haven't already seen this, you might find this video helps explain the usefulness of IVUS. I thought it a compelling argument.
http://www.youtube.com/watch?v=4FbBk3L- ... 9&index=15

i am not sure of all the techie stuff of IVUS but


travel to NY - $500
hotel costs - $1100
CCSVI procedure - $10,000
using IVUS to verify with 100% certainty that the doctor in Germany did not do any damage during my wife's first procedure - priceless.

HUGE LOL!

Mine too. Along with thorough and durable treatment. And proper follow-up care.
My long-term desire is for the researchers to get CCSVI accepted as mainstream, not alternative, treatment. Then it can be covered more easily under insurance and especially for Canadians. The priciness of the procedure shuts out so many people. IVUS adds to the cost of the procedure directly (IVUS catheters are used and disposed, at about $500 each if I recall correctly; the actual IVUS equipment is about $100,000 but that can be reused and may already be present at the hospital or clinic). It also adds to the cost indirectly: more time spent with IVUS means more doctor time spent, more nurse time, more building time, fewer patients can be scheduled.

But if reduced risk of injury is the desire, as it should be, we have some research showing this:
http://www.ccsvicare.org/outreach_update03.html

To flip that, you can have an approximate 99% chance of no complications if IVUS is used, versus an approximate 84% of no complications if IVUS is not used. And complications carry a high risk: these veins can be lost permanently.

When the balloon is inflated, the vein rounds out to accommodate the balloon, so it might seem that it's not necessary to know the shape of the vein, but it is necessary to know the CSA .... Cross Sectional Area .... anyway the idea is that you choose the size of the balloon based on the CSA. Too small of a balloon might be ineffective. Too large of a balloon risks vein injury. The goldilocks just-right size of balloon is large enough to create a hopefully durable opening of the vein but not cause injury.

The problem with the venogram used in CCSVI procedures is that you don't get a three-dimensional view of the vein, so you don't know if it's squashed (because veins can be easily squashed) so it might appear to be a big vein but it's squashed and is smaller inside than it appears from the straight-on view, or it appears to be a small vein but it's squashed in a different direction and is actually a bigger vein. Without the precise measurements from IVUS, it is hard to achieve the just-right balloon size.

CCSVI was founded on flow which is why Dr. Zamboni called it an insufficiency, but there has been more recent ideas that it is more of a hypertension than an insufficiency. It may be that these outflow obstructions affect the incoming flow by a small degree, but that the big effect is the creation of focal points of elevated pressure within the capillaries. These focal points of hypertension cause all sorts of mischief. And then when talking flow we also have to talk about cerebrospinal fluid flow.

jeez that's a long response.
CCSVI is fascinating to me. Because of my personal improvements and also because of the hope I have that this will benefit others on a large scale as it has benefited me. I hate the controversy. I just want CCSVI researched. If the use of IVUS means better results, then I want IVUS used in the research, and used clinically as we all rush off to have it done without waiting for the research.

thanks for the link Anonymoose [ great name ] to the IVUS discussion with DrS.

I listened to a portion of it . Very Interesting , I look forward to listening to the balance.

At the front end of the IVUS discussion [ If I heard it right ] DrS speaks of his talking with Dr Zamboni , then upon returning home , wondered if a certain piece of medical equipment at his disposal [ IVUS ] could be helpful in his CCSVI research.

As I understand it , this equipment was sitting unused for quite some time ..........

So a FAIR question to ask is this : If this equipment is so helpful .... why was it in a cupboard gathering dust for so long ? Not even used in other medical conditions ?

I'm NOT suggesting anything bad here. It appears to be more or less a question of " ability to use and understand " the new technology .

This problem now seems to be slowly ...... overcome.


MrSuccess

Hi CeCe and a belated HNY . Another great post. I like your style ,kid.

It is now 2013 . Dr.Zamboni's CCSVI theory is now 5 years out. So we certainly have no shortage of things to discuss. We have read the good , the bad and the ugly . So everyone can indeed ..... think as they may ....

For the record : MrSuccess is absolutely 100 % entrenched in his support for Dr Zamboni's discovery of CCSVI and it's link to MS. This is NOT as a result of viewing things through ' rose colored glasses' . As many have come to experience ..... MrSuccess does not suffer fools gladly ........

Now YEAR 5 of CCSVI ..... we can see the growth and wealth of information at our disposal. We see the great medical devices coming on line , helping our CCSVI pioneer medical professionals become the hero's , we know they are. BloodFlow neck collars .... IVUS ...... UPRIGHT MRI's ..... MRV's .... fMRI's ..... and on and on ..... and on.

This is jaw dropping . To come so far ..... so fast ....... I am awe struck.

It also appears CCSVI has it's opponents . Let's call them Neurologists.

I see them this way. Picture them sitting and playing the card game , Solitare. They seem stuck. They look and look , but seem stumped. Another person walks up to them and looks at the cards . ' Put the black 5 on the red six ' suggests the new eyes.

Instead of saying , ' Thanks .... I couldn't see it ' ...... the reply is often hostile. Who are YOU to tell me how to play this game !

As we know ...... we have some BIG ego's at play in the MS world. Not to mention $$$$$$ to be made or LOST.


MrSuccess

A good question for Dr. Sclafani's thread

My thought is that emergency gunshot wounds or other trauma care interventions are a time-is-of-the-essence situation?
Still even in other medical departments, IVUS is not in widespread use. The problem is that insurance does not reimburse for IVUS. In Japan, IVUS is reimbursed, and usage rates of IVUS among doctors is high.

I like your style too, MrSuccess.

It was hardly gathering dust. Firstly the artery guys were hogging it, and secondly at 900 dollars a pop, they did not leave them lying around for people to "experiment" on what they could find with them on a whim probably all waiting for confirmed medical studies proving the expense was worth it.

Actually the reason IVUS wasnt used was because it is used most frequently for coronary artery arteriography and we did not do that in my lab. Secondly, we did not do much arterial angioplasty because our patients were predominantly diabetic hypertensive underprivileged african americans who develop small vessel disease that is not amenable to IVUS, thirdly i became chairman and had little time to explore and fourthly my junior colleagues just were not interested in exploring

cece is right in trauma intervention, my first area of research and expertise, time is of the essence and there was little need for this device in treating such patients. it was on the way back from Ferrara that it became clear that correct sizing of the vein was going to be very important.
cece is also correct that size is extremely important, nay, critical to correct angioplasty. Selecting the balloon size on venography is like telling the exact height of a actor in a cinema or TV. Different size screens will either minify or magnify size and thus lead to erroneous estimations. IVUS is accurate in sizing down a tenth of a square millimeter, far more accurate than needed but certainly far better than fluoroscopy.

we all know that the vast majority of lesions in ccsvi in PwMS are intraluminal and about 25% of abnormalities cannot be recognized by the secondary signs seen on venography, so if you want to maximize the detection of lesions and you want to optimize treatment of CCSVI, then you need IVUS

Finally, the prices quoted are incorrect since the acquisition of american access care by fresenius vascular care

The base price is much lower than mentioned, IVUS is unbundled for those who cannot afford it, IVUS needs be done once in most situations, my prices include a 90 day costless treatment of complications requiring endovascular management, and to my knowledge, my prices for subsequent treatments are lower than first treatments and, likely, lower than other treating doctors

I am a bit embarrassed to discuss costs here, and did not mention price here that but I thought it was unfair to leave such an impression on line.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com