DrSclafani answers some questions

[CCSVIhusband]

Well, that's only sort of true.

In the initial treatment, it was only the azygous and the iliac (MT) treated.

During your procedure it was only the jugulars treated. - no azygous and no iliac.

So, there is some potential for confounding variables ... but not due to the jugular veins being treated at the same time as the azygous ever.

perhaps you are right. only way to tell would be to see the outcome of stenting an inconstant azygous stenosis AFTER everything that was more obvious was treated at a prior treatment to see if it really made a difference.

Again, I don't want to question a doctor's expertise ... I am by no means trying to.

I just have read a lot of results, take MathD's for example who was treated by you in late April (and just posted today in the Patient Tracking Sticky Thread).

He (MathD) had his azygous and iliac (MT) treated by you it seems ... and he's very happy with his results - as well as a jugular (maybe he'll read this and post for himself - or maybe you're unaware he posted, or his results, so take a look).

But one common thing I notice across this and the Facebook threads is a LOT of people who have the "WOW" results, seem to have their azygous treated, and opened up - stent or no stent. Again, see Rose2 who posts here only occasionally anymore, who had a stent, and went from a 6.5 EDSS to a 0.0 EDSS. I'd say that's "WOW". I could give several more examples ...

So, I've always just wondered if there's more to the "phasic narrowings" than is being accounted for at this time. Maybe not even just those types of narrowings, just the azygous in general. And I understand the azygous is the tricker, and maybe more unknown of the two.

I think it's important to plant that seed of doubt in a doctor's mind - to make those powerful brains think a bit ... and I mean no malice by doing so, maybe you'll start to think about it a little more and become a better practitioner in doing so, which is better for everyone.

[Cece]

It is important not to treat unnecessarily; there are a few people who have clotted or scarred in their azygous and lost that vein. (I only know of two.) Both suffered a worsening in their MS and mobility. This would be a particularly tragic consequence if it was a physiological or unnecessary area that had been treated.

That said, I would be divided on what to do if I possessed that particular azygous. I suppose I would wait out a few years while the doctors continued learning, if I had the freedom to wait. This might also allow for better stents to come to market.

[CCSVIhusband]

It is important not to treat unnecessarily; there are a few people who have clotted or scarred in their azygous and lost that vein. (I only know of two.) Both suffered a worsening in their MS and mobility. This would be a particularly tragic consequence if it was a physiological or unnecessary area that had been treated.

That said, I would be divided on what to do if I possessed that particular azygous. I suppose I would wait out a few years while the doctors continued learning, if I had the freedom to wait. This might also allow for better stents to come to market.

But how do you know it's unnecessary when so little is known about it? MAYBE it's unnecessary, but MAYBE it's the be-all, end-all. I understand caution ... believe me. But what if that caution is unjustified.

You're really just giving a bit of lip-service ... which I understand. But what IF CCSVI is never a success - to the degree it COULD be, because this vein was under-treated all along through clinical studies because of what is being thought to be non-impressive, really should have been viewed as a "OH NO, THAT'S NOT GOOD"?

In talking to many IRs, they really don't know what the azygous vein looks like before they got into CCSVI. So what if seeing this phasic-type narrowing in a CCSVIer may seem common because that's the only time they've been in that vein. BUT, what if, in MY azygous vein it doesn't open and close depending on breath or position, it stays open and pumps? Without the opening and closing, there's no reflux whatsoever in mine, but in a CCSVI azygous opening and closing phasic-type narrowing, there ALWAYS is, at least a little bit, with each breath it would seem. Right? And isn't it reflux, thus sheer stress, that's already been established as a bad thing?

Like I said, you just don't know ...

[1eye]

It is important not to treat unnecessarily; there are a few people who have clotted or scarred in their azygous and lost that vein. (I only know of two.) Both suffered a worsening in their MS and mobility. This would be a particularly tragic consequence if it was a physiological or unnecessary area that had been treated.

That said, I would be divided on what to do if I possessed that particular azygous. I suppose I would wait out a few years while the doctors continued learning, if I had the freedom to wait. This might also allow for better stents to come to market.

That seems to solidify the suspicion that the azygos is a key player in disability. Just as it may take a longer time in more cases to have this trouble, perhaps we should spend longer seeking mechanism and a friendlier treatment. I certainly am not saying our CCSVI doctors are not treating with loving care -- exactly the opposite. But the issue of disability being a tougher nut to crack means the nutcracker must be of the finest we can find, and maybe we have to invent a new kind.

I've been sampling "Seeing Further The Story of Science and the Royal Society" edited by Bill Bryson. It seems we could use a little of Bragg's X-Ray vision right now (he was a pioneer in x-ray crystallography, which is how we know what massive structures like organic chemicals actually look like at the atomic level). Good bedtime reading for insomniacs.

"Wow" results are the ones that give us disabled the most hope. While I don't want to be misled, and I know age limits my recovery, I do note that nobody accusing me of desperation actually has to look every day at a paralyzed limb that has forsaken them after 40+ years of friendship. I will grasp at whatever straws and elevator-cables I want to, thank you very much.

[Cece]

But what IF CCSVI is never a success - to the degree it COULD be, because this vein was under-treated all along through clinical studies because of what is being thought to be non-impressive, really should have been viewed as a "OH NO, THAT'S NOT GOOD"?

I worry more about clinical studies conducted by IRs who have not had a good number of CCSVI procedures under their belt. There is that learning curve. Also studies done by IRs who do not use best practices, even if we do not know what best practices are at this time. What to do about a phasic narrowing might fall into this category, along with a hundred different things from duration of inflation to anticoagulants to how long to push on the entry point after the procedure.

In talking to many IRs, they really don't know what the azygous vein looks like before they got into CCSVI. So what if seeing this phasic-type narrowing in a CCSVIer may seem common because that's the only time they've been in that vein. BUT, what if, in MY azygous vein it doesn't open and close depending on breath or position, it stays open and pumps? Without the opening and closing, there's no reflux whatsoever in mine, but in a CCSVI azygous opening and closing phasic-type narrowing, there ALWAYS is, at least a little bit, with each breath it would seem. Right? And isn't it reflux, thus sheer stress, that's already been established as a bad thing?

I meant what I said about being divided on what to do. Seeking out an IR to stent the azygous would be on the list of hard choices. Leaving it be would also be a hard choice. I do not envy such a situation....

Do you know if this phasic azygous for sure has reflux? This would have been seen on the venograms.

[jgalt2009]

Do you know if this phasic azygous for sure has reflux? This would have been seen on the venograms.

I am so out of my league here... but I thought that reflux was only a concern in veins that were proximal to brain matter (DCV's) and spinal cord (lumbar and vertebrals). Reflux in azygous may propagate to the v-plex, but that does not seem to be the concern. Am I misunderstanding something, or just wrong?

[pklittle]

truly occluded veins are a really challenging entity. Hard clot, limited accessibility, strong resistance to catheterization, loss of intimal integrity, poor outflow and poor inflow, uncorrected or unrecognized causes of thrombosis, hypercoagulability are some of the things that must be overcome.

i digress....just having a momentary nightmare.....i will survive

Dr. Sclafani,
If a year has gone by since a vein has occluded, is it guaranteed that it is a hard clot? Does amount of time passed dictate the degree of density of the clot?
thanks
Pam

pam,
clot may proceed to fibrosis and stricture of the vein. or it may recanalize leaving a short channel of thrombus that is hard. How long the stenosis measures depends upon the anatomy of the collaterals. Clot propogates up and down the vessel until it comes to a point where flow maintains its patency. That is generally at vessel branch points that allow flow to continue. Remind me after the symposium and i will show you a case where thrombus is persistent only for a short distance where there was no flow. This made it easier to traverse the clotted segment and to recanalize the vessel.

How much of this can be determined by an ultrasound?

[CCSVIhusband]

I meant what I said about being divided on what to do. Seeking out an IR to stent the azygous would be on the list of hard choices. Leaving it be would also be a hard choice. I do not envy such a situation....

Do you know if this phasic azygous for sure has reflux? This would have been seen on the venograms.

it certainly was. Though the pictures are gone now ... if you recall that far (I do) ... you saw the flow of the contrast media back down the azygous instead of ascending.

And that back flow started right at the point of the phasic narrowing. Mind you it (the backflow) wasn't constant, because as is the nature of that particular narrowing, was that it opened upon DEEP breath (or DEEP exhale - not sure which), and flow was 'normal' then.

Like I said ... I just want to stimulate our good doctors thoughts on this matter ... (I don't contend I'm right, I just put my thoughts and learned readings out there) again, just based on results and reading others treatments and their results, and things like 1eye points out ... where disability certainly seems to in some way azygous related in terms of response to CCSVI liberation.

[Cece]

Did any other echogenic material show up in the azygous? I am thinking of when Dr. Sclafani has said that he has been seeing echogenic material but not knowing what to make of it, but has concluded it is webs and will now balloon those areas.

Was the renal vein checked?

What I remember is what an odd kink it was. I don't know the explanation for why it would kink in like that, just in one spot, in whatever stage of breathing that it was. Some weakness or collagen abnormality in the vein wall?

[Cece]

Rather than the testimonial method of patient participation at the NYC CCSVI Symposium Patient Day, I have chosen a round table discussion of the procedure with all panelists being patients and me being moderator.

If there are any questions outthere that readers would like to propose to the panelists, please state them here ...

thanks

sal sclafani, an equal opportunity doctor

this is ironic DrSclafani answers some questions asks for some questions and no one is there.

bumping this forward....

[flipflopper]

Dr S,

In the month of June you wrote "there are few procedures scheduled for the next couple of weeks for reasons i cannot explain. i will have some time to wonder why. perhaps everyone thinks that my waiting time is greater than it is."



I have been on your waiting list in the past but I have been thinking hard in the last 2 years when the right time to be treated would be (I also take the financial costs of the procedure under account and it is one of my reason for waiting a little longer). I have not had the chance to visit this site much in the last 5 months but I would love to know where your waiting list is at now. You don't happen to have space for an appointment next month do you ? I should probably e-mail Holly but I thought that perhaps others were wondering the same thing.


Thanks again for your time!

[pklittle]

Rather than the testimonial method of patient participation at the NYC CCSVI Symposium Patient Day, I have chosen a round table discussion of the procedure with all panelists being patients and me being moderator.

If there are any questions outthere that readers would like to propose to the panelists, please state them here ...

thanks

sal sclafani, an equal opportunity doctor

Dear equal opportunity doctor ,
So are you looking for patient-to-patient type questions, like asking about their particular procedures, experiences, results, etc?
Pam, an MS'er seeking an equal opportunity

*I added some questions in the other thread, as they might get lost in this one.

[bonzo1986]

Would it be possible to have a "normal" person volunteer be a guinea pig, and have their azygous vein looked at and see how it functions?

[drsclafani]

Dr S,

In the month of June you wrote "there are few procedures scheduled for the next couple of weeks for reasons i cannot explain. i will have some time to wonder why. perhaps everyone thinks that my waiting time is greater than it is."



I have been on your waiting list in the past but I have been thinking hard in the last 2 years when the right time to be treated would be (I also take the financial costs of the procedure under account and it is one of my reason for waiting a little longer). I have not had the chance to visit this site much in the last 5 months but I would love to know where your waiting list is at now. You don't happen to have space for an appointment next month do you ? I should probably e-mail Holly but I thought that perhaps others were wondering the same thing.


Thanks again for your time!

i am uncomfortable discussing my practice on this site. I have always tried to separate my practice from my caring for PwMS. Perhaps facebook is another way to address this.

but since you asked, it seems that there are many people who have assumed that it is the standard to have a long waiting list. I think that this is not true for me. I have an opening for tomorrow, for example.

But further discussion about this by me on this site is awkward and you can private message me if you like or email me at ccsviliberation@gmail.com

sorry for the intrusion. this site is for patients, not a doctor's practice.

S

[drsclafani]

Would it be possible to have a "normal" person volunteer be a guinea pig, and have their azygous vein looked at and see how it functions?

that would be a series of one. insufficient to draw conclusions.

AND I PREFER THE TERM "HEALTHY CONTROL" TO "NORMAL PERSON"

DON'T YOU?