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girlgeek33
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PostPosted: Wed Jun 16, 2010 4:46 pm 
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Cece wrote:
I am also once again holding my breath for IRB news. I do this a lot, around here. ;)


Ditto, Dr. S. any update on what is happening with your IRB process for approval? Will they get back to you soon or wait another month, until next meeting to make a decision?
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Cece
 Post subject: Re: Baloon Angioplasty
PostPosted: Wed Jun 16, 2010 5:06 pm 
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Opera wrote:
Dear Dr Scaflani,

Of the patients you have treated for CCSVI, did you have any who showed improvements only after several weeks?

I underwent the procedure about three weeks ago but have not experienced any improvements to the symptoms. It is possible I have restenosed. I have scheduled a follow-up doppler for next week.

With best wishes

A Big Fan

This doesn't fully answer your question but it's what he's said in the past about post-procedure improvements. I figure if I repost this, it might spare him having to repeat himself when he answers your question. Hopefully he will have more to add to this! And I hesitate to add: maybe the concern should be not restenosis, but possible undertreatment/missed stenosis in the first place?
drsclafani wrote:
Rosegirl wrote:
So can you shed any light on post-procedure changes in patients' conditions?

Gratefully!


So far PPMS has shown little change. Those patient was already chaired and limited improvement was expected. it is too early to say whether progression is slowing or stopped, of course.

both RRMS and SPMS have shown a variety of scenatios, ranging from spasticity abating before completing ths test, only to recur shortly there after.
there has been acute relapse, but the associated development of optic neuritis turned out to be chronic sinusitis. There was the man who walk hugged to finaicial clearnace who run up and down stairs the next m orning, only to lose those amazing effects in the first three weeks. There are those who had minimal changes to begin with who then wanted to go o rehab because they felt like they could do it.
Frequently there is mproved warmth and reduction in numbness in the extremities

but it is all too soon. Some of the earlier cases are waiting to come back for a second treatment becuase i am better now than when i started tiong this.

There have been all "normal" azygous veins,until i discovered a better way to image them. now they are mostly abnormal....ralph waldo emerson said it, among others....."people see what they are prepared to see'

So the anecdotes will remain that way for now. the trial will be more rigorous

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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soapdiva884
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PostPosted: Wed Jun 16, 2010 7:56 pm 
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Breath holding happening here in NY too!!!!! (for IRB approval) Love the article and congrats Dr. Sclafani, you are very much loved here.
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drsclafani
PostPosted: Wed Jun 16, 2010 9:36 pm 
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Rokkit wrote:
drsclafani wrote:
How can evaluating the lumbar veins be helpful? it is helpful in explaining the disease. at the current time, there is no solution to the lumbar vein narrowings (hypoplasia). But it can explain the disease. It appears that lumbar hypoplasia is associated with PPMS.

Needless to say, this is an extremely encouraging avenue to explore. I am missing the bulbocavernosus reflex which almost certainly indicates an as-yet unseen lesion in my S2-S4 spine. My venogram which didn't reveal anything suspicious in the lumbar area was done from the right side. Whether anything can be done about it or not, I'd sure like to know what's what down there.


that is exactly what robbi said patients would say.....that would want to know
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drsclafani
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PostPosted: Wed Jun 16, 2010 9:47 pm 
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MS_mama wrote:
Dr S--

Can you tell us a little bit more about the possible risks of the procedure? I am concerned about what I am hearing from patients that they improve temporarily but then when they worsen, they worsen to a point worse than pre-procedure. Plus some patients are remarking that they start progressing faster than before. That makes me wonder if, as I had asked before, if this is related to the procedure causing the veins to become hyper-reactive.

I am also concerned about a couple of reports of people developing new symptoms immediately post-procedure. Have you seen this?


I have seen a variety of situations

no change

dramatic improvement lasting a few weeks
dramatic improvements that are sustained

exacerbation happening at the time of liberation
exacerbation after liberation

slight improvement that gradually increases in improvement
sustained progressive improvement

In other words, i have seen no pattern, nor have i become clear about long term effects. Afterall, my patients are about 3-4 months out from the procedure. it is too early to tell, and unfortunately there is too little information out there


Quote:
And lastly, if i may inquire about the potential relevance of the lumbar veins---so if I understand you correctly, hypoplasia of these veins may be associated with spinal lesions?and is there any possible connection between may-thurner and MS?


Yes, it is likely that spinal lesions are associated with lumbar vein hypoplasia. May thurner, renal vein obstruction and other abdominal venous problems may make ccsvi worse. But i would not think that there is a greal association btween M-T syndrome and ccsvi
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drsclafani
 Post subject: Re: Baloon Angioplasty
PostPosted: Wed Jun 16, 2010 9:54 pm 
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Opera wrote:
Dear Dr Scaflani,

Of the patients you have treated for CCSVI, did you have any who showed improvements only after several weeks?

I underwent the procedure about three weeks ago but have not experienced any improvements to the symptoms. It is possible I have restenosed. I have scheduled a follow-up doppler for next week.

With best wishes

A Big Fan


i dont recall anyone who had NO positive effects very early who then got improvements later. I have had patients who had modest improvements like the new onset of sweating in a patient who slowly got stronger. Perhaps this might be related to improved physical therapy
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drsclafani
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PostPosted: Wed Jun 16, 2010 10:02 pm 
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mshusband wrote:
Dr. Sclafani ... what role do you suspect the inferior vena cava could play in issues in the legs?

i do not think that the inferior vena cava plays a role in ccsvi unless the usualy suspected veins are involved. Then alterations of flow within other structures can make it worse.

Quote:
Could a blockage there cause the real issues in the spinal area? Since an obstruction therein would cause more blood to flow through the lumbar veins and the azygous/hemi-azygous? Wouldn't the added pressure on those veins likley cause more issues?


a blockage in these other veins may make ccsvi worse, but i do not think that they will inddependently cause ccsvi.

and remember this is not about pressure. it is about flow volume

Quote:
Are there any veins that you can't get into? If no ... why not just check all the critical veins?

there are very few veins. but there are hundreds of them so where do we stop. ACtually i think the full ferrara protocol is pretty inclusive..

Quote:
I wonder ... also because my wife rarely gets her period regularly (sorry to anyone who had to read that who was unprepared) ... since the IVC drains the gonadal vein ... could it be there is an issue therein?

Just thinking out loud.


the gonadal vein really does not have much to do with menstrual hemorrahge.
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drsclafani
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PostPosted: Wed Jun 16, 2010 10:05 pm 
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fogdweller wrote:
Dr. S., without getting too graphic, during the past 3 months I have experienced significant bowl disfunction (not constipation exactly. rather infrequent and difficult movements. the muscels dont seem to work right. Opps, I just got too graphic.)

I have had PPMS for 35 years, but the last 5 have seen more progression than the previous 30. Is the current thinking that CCSVI get worse over time, or is it just an accumulation of damage as a result of VI that has always been there?


The current thinking is that we need more research to understand fully what is ms and what is ccsvi

as your disease progressive there are brain lesions that get worse. and the atrophy of the brain gets worse and other effects. With less brain reserve, i would guess that symptoms would get worse
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drsclafani
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PostPosted: Wed Jun 16, 2010 10:17 pm 
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girlgeek33 wrote:
Cece wrote:
I am also once again holding my breath for IRB news. I do this a lot, around here. ;)


Ditto, Dr. S. any update on what is happening with your IRB process for approval? Will they get back to you soon or wait another month, until next meeting to make a decision?


Ok
they had some reservations but did not make a decision. they want to speak to a neurologist and to a neuroradiologist, neither of whom are likely to know as much about ccsvi as I do.

the IRB brought up two publications that concerned them. One was the german article stating that there is no good correlation between ccsvi and ms. i have to be able to rebut this paper so i looked for it. but it is in a german journal. I went to the journal webpage and bought the article.

Mind you, i have only two years of high school german, and i only got a B. But the article seems less than convincing. Does everyone know that the authors imaged only 10 patients with MS and 7 patients with no evieence of ms.

they did not find a correlation but it was not statistically significant in proving their point. it was offensive to paolo Z and robert Z.

the other paper was pure opinion. not fact.

if they want to harrass me, then let them but we shall see on monday when another emergency meeting of the IRB is being scheduled.

BTW, if you are tortured by this, join the club
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drsclafani
 Post subject: RESEARCH IDEA
PostPosted: Wed Jun 16, 2010 10:27 pm 
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Over the past couple of months, a number of patients have sent me CDs containing MRvenograms, ultrasounds and venograms, along with interpretations.

I have viewed many with dismay

I would say in general that the majority of the tests have been poor, inaccurate, inaccurately reported, and displayed in a substandard or incorrect way.

For example, ultrasounds that do not confrom to the ferrara recommendations and protocols.
for example a venogram of a normal left vertebral vein was reported as thrombosis of the jugular vein

So i had an idea to do a study of the state of the imaging now.

i would define with paolo, an acceptable image set for each test.

then review studies that are volunteered by patients to see what the standard are

would people be willing to participate in this trial.
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Algis
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PostPosted: Wed Jun 16, 2010 10:31 pm 
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Quote:
would people be willing to participate in this trial.


Anytime Doctor; but I'm not in the US :( Many others will pop up both hands raised I am sure :)
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Trish317
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PostPosted: Wed Jun 16, 2010 10:35 pm 
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drsclafani wrote:
girlgeek33 wrote:
Cece wrote:
I am also once again holding my breath for IRB news. I do this a lot, around here. ;)


Ditto, Dr. S. any update on what is happening with your IRB process for approval? Will they get back to you soon or wait another month, until next meeting to make a decision?


Ok
they had some reservations but did not make a decision. they want to speak to a neurologist and to a neuroradiologist, neither of whom are likely to know as much about ccsvi as I do.

the IRB brought up two publications that concerned them. One was the german article stating that there is no good correlation between ccsvi and ms. i have to be able to rebut this paper so i looked for it. but it is in a german journal. I went to the journal webpage and bought the article.

Mind you, i have only two years of high school german, and i only got a B. But the article seems less than convincing. Does everyone know that the authors imaged only 10 patients with MS and 7 patients with no evieence of ms.

they did not find a correlation but it was not statistically significant in proving their point. it was offensive to paolo Z and robert Z.

the other paper was pure opinion. not fact.

if they want to harrass me, then let them but we shall see on monday when another emergency meeting of the IRB is being scheduled.

BTW, if you are tortured by this, join the club


Hi Dr. S,

Cheerleader has been evaluating the German paper on this thread in the General Forum....
http://www.thisisms.com/ftopict-12259.html

And this one in the CCSVI forum....
http://www.thisisms.com/ftopic-12225-45 ... rasc-.html

As usual, her research and evaluation are spot on.
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cheerleader
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PostPosted: Wed Jun 16, 2010 10:35 pm 
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Dr. Sclafani--I have the German paper translated, as it was published in the Annals of Neurology. PM me with your e-mail and it's yours, or you can get it yourself-
No cerebro-cervical venous congestion in patients with multiple sclerosis
(73 characters)
Florian Doepp, MD1; Friedemann Paul, MD1,2; José M. Valdueza, MD3; Klaus
Schmierer, PhD4,5*; and Stephan J Schreiber, MD1*
http://www3.interscience.wiley.com/jour ... 6/abstract


I've been going thru it with a fine toothed comb. I can find a few discrepancies with the Zamboni protocol regarding loci of the transducer and valsalva/IJVVI as opposed to true venous reflux, and their method of measuring blood volume was quite convoluted....but I know you'll find many more. Good luck...I'm sure Dr. Zamboni will be making a full reply to this paper.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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Cece
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PostPosted: Wed Jun 16, 2010 10:44 pm 
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drsclafani wrote:
if they want to harrass me, then let them but we shall see on monday when another emergency meeting of the IRB is being scheduled.

BTW, if you are tortured by this, join the club

I appreciate that they're holding emergency IRB meetings, that is better than waiting a full month.

But, yeah...I'd go for some quick water-boarding if it'd make an approval come faster.

Hang in there, DrS. :)

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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drsclafani
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PostPosted: Wed Jun 16, 2010 10:49 pm 
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Trish317 wrote:
drsclafani wrote:
girlgeek33 wrote:
Cece wrote:
I am also once again holding my breath for IRB news. I do this a lot, around here. ;)


Ditto, Dr. S. any update on what is happening with your IRB process for approval? Will they get back to you soon or wait another month, until next meeting to make a decision?


Ok
they had some reservations but did not make a decision. they want to speak to a neurologist and to a neuroradiologist, neither of whom are likely to know as much about ccsvi as I do.

the IRB brought up two publications that concerned them. One was the german article stating that there is no good correlation between ccsvi and ms. i have to be able to rebut this paper so i looked for it. but it is in a german journal. I went to the journal webpage and bought the article.

Mind you, i have only two years of high school german, and i only got a B. But the article seems less than convincing. Does everyone know that the authors imaged only 10 patients with MS and 7 patients with no evieence of ms.

they did not find a correlation but it was not statistically significant in proving their point. it was offensive to paolo Z and robert Z.

the other paper was pure opinion. not fact.

if they want to harrass me, then let them but we shall see on monday when another emergency meeting of the IRB is being scheduled.

BTW, if you are tortured by this, join the club


Hi Dr. S,

Cheerleader has been evaluating the German paper on this thread in the General Forum....
http://www.thisisms.com/ftopict-12259.html

And this one in the CCSVI forum....
http://www.thisisms.com/ftopic-12225-45 ... rasc-.html

As usual, her research and evaluation are spot on.


this was helpful to me.

the reason dr zamboni wants the study done in inspiration is to activate the thoracic pump and increase blood flow through the jugular veins. it is the overwhelming of the outflow volume that leads to the reflux in ccsvi.

and how did she get the paper in english?

i paid $34. to get a copy in german :cry:
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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