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CaptBoo wrote:Cece, where did you get that 2% number?
drsclafani wrote:
ozarkcanoer wrote:...
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
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.
drsclafani wrote:
That will require considerable study and review. We are not there yet.
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
Iteresting thing is that, according to Buffalo study, we can diagnose cerebrospinal outflow obstructions on every fourth healty pearson - it's a huge number of people. How come that they don't have any cerebrospinal outflow obstruction symptoms?
M.
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,
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.
drsclafani wrote:
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
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.
I have recently had my balloon angioplasty of the RIJV and LIJV with one of the valves being abnormal. Azygos was noted as ok.
One of the notations in the findings documentation is that the lumbar vein is abnormal due to being enlarged. Is there any explanation that goes along with this type of finding? The doctor said this is rare.
Dr. Sclafani, Do you have an opinion on dissolvable stents? There's a thread you may have seen about dissolvable stents on trial in Europe (developed by Abbott Labs).
I realize the biodegradable stents won't be available for a while (if they make it thru trials) but I'm curious what you think. Also, did you have any more thoughts on my venography images (a recent pm). Thanks for all your help with this.
Dr. S. Hope you can start getting the needed "approvals" so we can have the advantage of your expertise in treating our CCSVI !
My ?: Will being on the original waiting list be the starting point for treatment?...and...will that tx be in Brooklyn?
Thanks for being around during our struggle!
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?
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?
Not to answer for Dr. Sclafani, but I think the opposite is true regarding your point #1.
ozarkcanoer wrote: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
When one looks at the unpublished data on venography, one sees abnormoal veins in almost all patients. The doppler underestimates or at best approximates the findings of catheter venography.
But we need to increase experience and baseline appearance of veins on doppler because we cannot do venography every three months.
drsclafani wrote:i am just going to try to use larger balloons, longer and m ore frequent dilatations and fractionated heparin or heparin like material.
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?
cece
if one dilates progressively, rather than one larger balloon, then the chance of rupture is reduced. Dr. Sinan is not having ruptures. Sometimes small extravasations, but not ruptures.
cutting balloons dont really cut, they indent the vein and they increase the effective pressure generated on the wall. I wil be using cutting balloons as well as other techniques to the same thing nonetheless, i do intend to use cutting aka scoring balloons , anything to improve the effective dilatation.
I just do not like the idea of stents at this point.
bluesky63 wrote: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.
Possibly, its just that their persistence in using stents to optimize diameter seems more striking that other colleagues
there is no going back from stents. Metalmania needs to be overcome until there is evidence
Malden wrote:
Iteresting thing is that, according to Buffalo study, we can diagnose cerebrospinal outflow obstructions on every fourth healty pearson - it's a huge number of people. How come that they don't have any cerebrospinal outflow obstruction symptoms?
M.
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,
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.
Thaqt is possible.....but ccsvi was defined as having two findings on doppler ultrasound because there was not enough statistic difference between MSers and healthy patients using only one doppler finding. It required two findings. True, true but unrelated.
I anticipate that the buffalo data will get closer to zamboni data with more experience...but remember the gold standard shows overwhelming anatomic correllation
drsclafani wrote:
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
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.
well, that is great news and gives opportunity for hope
