This Is MS Multiple Sclerosis Community: Knowledge & Support

Cece, where did you get that 2% number?

I have said this from the beginning. There is no evidence that stents are ncecessary. Dr Zamboni, who has so far written the only study on this subject, recommended against stents

Four groups come to mind that have treated more than 200 patients each. Three use stents, one of them treats about half the patients with stents

one of these groups does not use stents routinely and has never placed a stent. Yet their restenosis rate at three months is2%. TWO PERCENT.

they are doing something right and i look forward to their publications

I will not stent

we can only speciulate about some of the reasons that healthy patients have doppler findings suggestive of ccsvi.

1. doppler is a screening test: the gold standard venography needs to be sone to prove whether the helathy patients actually had some visible probelm
2. healthy patients included relatives of patients....does that influence things
3. will the positive healthy patients develop MS,

We know from other diseases that mental confusion, headaches, lethargy and fatigue, and imbalance can result from cerebrospinal outflow obstructions that are not ms....but we have yet to learn how to teaase apart symptoms in MSers who have ccsvi

Dr. S.

I have ttwo questions:

1. If the jugulars collapse and the azygous drains the brain when the pt is lying down, would radiography of the jugulars when the pt is lying down appear to show a stenosed vessel?

2. If large balloons are used, would the additional "injury" make it more likely that the veins would heal shug, i.e. restenose?

I would be interested in your comments on my CCSVI case. I was imaged with MRI/MRV plus doppler ultrasound in May at BNAC. They discovered severe stenosis in my right IJV.

I was treated by Dr H in Baltimore on August 17 and he discovered stenosis in both my right IJV and my left IJV and a twist in my azygos. I received 2 stents up by my ear in both IJVs and was ballooned only in my azygos.

I sent my MRI/MRV imaging results (copies of my CDs from BNAC) to Dr Haacke last summer. Just this month (after my procedure) I received back from Dr Haacke another analysis of my veins using Dr Haacke's protocols and software. Dr Haacke discovered the stenosis in both my IJVs but (of course) he could not see my azygos.

So, I have had 3 different analyses of my veins from 3 different very experienced places (BNAC, Dr Haacke, Dr H in Baltimore). It worries me that the BNAC data are skewed to misdiagnose CCSVI. And it is the BNAC data that seems to have the greatest influence on neurologists. Plus it worries me that all the other CCSVI research sites that rely on imaging only are showing many false negatives !!!! How can we convince neurologists and researchers that interpreting images is so subjective? My own case is a perfect example of this.

ozarkcanoer

Dr. Sclafani, you have passed 1,000 posts!

An amazing milestone!

Thank you!

So the benefits to this are:
* reducing the rates of restenosis, possibly all the way down to 2% (!) which I would not have thought possible
* avoiding altogether the short-term and long-term problems that may be associated with stent usage

But the risks are:
* a chance of more tears in the vein due to the larger balloons or longer dilations
* as a result of the tearing, a greater risk of clots or vein regrowth to occur, with the ultimate risk being a clot breaking off or a vein growing closed (and this would be what the heparin-like material or fractionated heparin will be working to counter)

Did I miss anything?

Are you less likely to use a cutting balloon if you are now planning to use these larger balloons and longer dilations, because they increase the tearing and a cutting balloon also increases the amount of tearing?

It's also possible, of course, that something in the population of the people they are treating could be contributing to the higher success rate. Just to be thorough on considering all the factors.

Don't the other veins draining the cerebro-spinal area contribute so that it might be possible to have some obstruction, maybe even that seems significant, and yet have healthy circulation? Isn't this why Zamboni defined CCSVI as having at least two obstructions? Has blood transit time been measured in any group with obstruction but no symptoms? That would seem an important issue.

I would like to add optical processing. I was just liberated after 35 years of PPMS and truely expected no change except, hopefull, no further progression but almost immediately seemed to experience an increased ability to see without as much difficulty or confusion. Scanning grocery shelves for a specific product or watching what was going on in moving, weaving traffic became much easier and less stressful, although that was not an accuitiy issue. Ability to read eye charts had never been a problem. But a lot of seeing takes place in the optical nerve and within the brain, and so it is not surprising that better circulation seems to help.