This Is MS Multiple Sclerosis Community: Knowledge & Support

[Trish317]

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

Awwww, I don't know..... ....but she posted right after I did that she'll send it to you.

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

[simone]

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.

I would gladly be willing to participate in any way possible.
My MRV was recently sent to you before I had the chance to send the report with it. I imagine you will find everyone to be as well.

[Stacemeh]

Speaking of papers...

Dr. Lorne Brandes (CTV News Canada, AKA W5) talked recently about something that maybe helpful.

http://healthblog.ctv.ca/post/CCSVI-tri ... stion.aspx

Quote from Dr. Brandes' health blog:
"On that basis, are we to believe that our most vital and, in many ways, most delicate organ, the brain, stands alone in being impervious to impaired venous drainage? Hard to imagine.

Indeed, a recently-published case report that included a literature review, summarizes what has been observed when one or both jugular veins in the neck are suddenly blocked off by a clot. They include increased intracranial (brain) pressure; headache; altered consciousness; lethargy; double vision; visual loss; and eye muscle (6th cranial nerve) weakness.

Do the symptoms sound familiar? They do to many patients with MS. Is it just coincidental that sudden jugular vein occlusion mimics many of the findings in MS? I truly doubt it."

http://journals.lww.com/neurosurgery/Ab ... se.36.aspx

[nono]

Dear dr.sclafani,

The Dutch MS centre , part of the university hospital of Amsterdam who claims to be one of the leading experts on MS knowledge in the world just presented there outcomes.
They tested 20 ms patients and 20 control , in a sort of blinded study.
(the MS lesions were removed from the pictures).
They only used MRV.

The outcome was : Stenoses are found just as frequent in MS patients as in healthy controls. So its not recommended to do the treatment because there is no evidence stenoses have anything to do with MS.

It was on Dutch television yesterday.
People are angry and frustrated because the neurologist responded to the results of treatment to be a placebo.

A wonderful Belgium doctor who does the treatment , responded in an open letter on the Dutch forum , his results :
81 patients treated

* 64 ballon-dilatatie
* 2 valvulotoom
* 8 cutting ballon
* 7 stenting
and no complications.
Most off the patients report improvements.
He questions the "statistical power " of the Dutch results on only 20 patients.

I question them to , MRV only is not sufficient to find CCSVI is it?
And didn't Zamboni had more criteria s for CCSVI , not just stenosis?

Hope this is of any help to you,


I was treated in Frankfurt by dr.Vogl 3 months ago and still enjoining the placebo effects everyday! (I can send the copy's of the CD's if you want also the reports but they are in German)

Nono
(from Holland so excuse my sometimes poor language)

[Sotiris]

[...]and how did she get the paper in english?

[...]

There are two different papers from different German authors that somehow dispute CCSVI theory. The one mentioned by Cheerleader is titled "No cerebro-cervical venous congestion in patients with multiple sclerosis", where they have tested 56 pwMS and 20 HC. They found no person with CCSVI and only one with a bi-directional flow in an IJV (only in the supine position).
The other one is titled "Chronic cerebrospinal venous insufficiency" and multiple sclerosis: critical analysis and first observation in an unselected cohort of MS patients, where they have tested only 10 pwMS. They found 2 persons with CCSVI.

Edited to correct an error about the findings of the first study (I had mentioned that they found one person with CCSVI)

[coin]

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.

My dear Dottore, well I was wondering wrt Doppler protocoll, I heard that Dr. Zamboni is not to much a fan of sending his protocoll, which is, as I understand still in the process of being updated and standardized, to interested doctors...since he would like to have the test dones "only " in studies ....and that would be a little obstacle to the practicinors who are interested but right now are not performing any studies but "pure testing and treatment"...do you think Prof. Z eventually will publish his final protocoll to all and openly?? And any ides already being more worked on for a kind of central registry for all "liberated" from Dr. Z, may be you discussed last week:-)) and cooool that your retirement is being layed off by you;-)))

[BBE]

I always wonder what knowledge of diagnosing CCSVI doctors like Dr. Simka, Dr. Bonn, Dr. Metha, Dr. Zivadinov, Dr. Vogl, Dr. Dake (to name a few) and many, many others involved around the world have. Did all of the doctors meet with Dr. Zamboni? (@ Dr. Scaflani: do you have any information if any of the doctors saw and learned from Zamboni diagnosing patients?/ Is his colleague Phd. Erica XY as good as Zamboni or even better?) Is it possible to be self-educated in this without ever speaking to Zamboni?
Even Zamboni has not his protocol ready, it is still being developed. Is he still learning new vein disorders he didn`t consider before or did he know about all of them in his pivotal (100% correlation) study? Can we consider Zamboni as the one who nows the most and the one who would find the most vein disorders?
I can understand when some doctors don`t find anything that it is probably because of lack of skills and experience. If that is the case and these doctors didn`t talk to Zamboni or anyone else with CCSVI experience what is the motivation of these doctors (self education and/or money only?)
Based on your experience, Dr. Scaflani, I would never like to be the first patient of an unexperienced doctor and pay for the procedure if it`s that complicated. On the other hand doctors like Dr. Bonn did only 3-4 patients and all of them feel better. Either is he experienced enough to find any disorders or the 4 patients did only have some basic disorders that are easy to find and treat.

Sorry if my thoughts are bit chaotic but I simply wanted to say that I see unbalance between A) doctors studying and learning everyday from each other and trying to find possible new or overlooked vein disorders and B) doctors performing liberations for money without any responsibility of the outcome.

[Rokkit]

would people be willing to participate in this trial.

I have before and after MRVs and a venogram you are welcome to any time.

[LR1234]

I also have seemingly normal MRV and CT scans but my venogram shows clear issues. If you need them, just let me know and I will send 'em over.
I haven't had an after MRV done yet though. Planning on getting that done this week.

[girlgeek33]

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.

Absolutely! Say when?!

[lucky125]

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.

I'm in! I already sent you my venogram, but I have the doctors report to go with it. I look forward to you instructing us where to send it all when you are ready to receive.
Just asking, but you are just one man, right? I hope you are taking care of yourself while you work so tirelessly to take care of us! Please kiss your wife and thank her for us. She is a saint, too, for loving and supporting you through this mission!

Nicole

[jr5646]

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.

Absolutely! Say when?!

Count me in too.. I just had the full workup at Buffalo (BNAC.net) MRI, MRV, Doppler, Reports etc.

Just tell me where to send them?

[ozarkcanoer]

Dr Sclafani,

Your study of the results of imaging is a good idea. I had MRI and MRV plus doppler ultrasound at BNAC. If you would like me to send you copies of the CDs and reports of the imaging I would be more than eager. Just let me know where to send them. BTW, I was diagnosed with 2 of the 5 Zambomi CCSVI parameters. Stenosis in right IJV at C1-C2 which was shown by both the MRV and the doppler. Plus NO delta CSA in the right IJV.

ozarkcanoer

[vivavie]

Your wish is my command!!!
Anything for you Doc! Just ask and you shall receive!

[jfhcrgvr]

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...would people be willing to participate in this trial.

Absolutely. We have sent CDs of my wife's MR study and a copy of the radiology report to Dr. Haacke and expect to hear from him shortly. The MRV report stated smooth proximal narrowing of the IJVs bilaterally. My wife has had MS for 30 years and has been SPMS for 18.

I was moved to tears (but then again, I cry for Hallmark greeting card commercials!) when I listened to your comments in Italy and heard you talk about deciding to postpone your retirement.

Our status: we met on Monday with my cardiologist, whom I introduced to CCSVI and who has read every paper and listened/watched every presentation I've forwarded to him. He's supportive, and agreed to confer with a local FSIR and go over the study images jointly. I gave him a copy of the '09 paper by Lee et. al. to give to the FSIR and requested that he discuss her case presentation exclusive of her MS diagnosis in order to have it viewed as a vascular problem for obvious reasons.

Later today I will find out if the FSIR will meet with us to discuss performing venography. If he is willing to proceed, may I provide your name and contact info to him so that he may benefit from your practical experience thus far?

Assuming she undergoes the procedure locally and it is successful, I will then offer to support him in any way possible on an IRB effort. I'm happy to provide my PM address through Cheerleader.

Many thanks.