DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby drsclafani » Sun May 16, 2010 8:12 pm

NZer1 wrote:Hi everyone.
Dr. S I have looked through the information on the test from SF 36.org
http://www.sf-36.org/tools/sf36.shtml
It is beyond me, although after looking to find an established test, it does appear that the literature gives it the closest detail for our purpose. They quote many fields that would be important for your study trial. There is if I understand correctly software that can analyse the data produced. I believe that it may not be subtle enough for the purpose though.
From what I can see there is data usable for normal controls, although I don't see or understand it myself, maybe its in the Manuel form of the program.
I am guessing that this would need to be trialed to assess whether it would fit the purpose and or could be modified to suit.
I am of the feeling that like so many other assessments it is relying on patient assessment to much without the subtlety of a external measurement that is transferable and repeatable with accuracy.
Maybe a starting point for design of something new though?


A couple of members of TIMS are working on creating an online versions of the survey with me. We will beta test it when its finished.

And guess who I will ask to help do the beta testing? :lol:
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Postby drsclafani » Sun May 16, 2010 8:28 pm

WEll, that was really an interesting week of discussions.

Many ideas on trials, lots of symptoms worthy of evaluating as part of trials, plenty of design ideas, some ethics, great positive activism!

Larmo was right. you are an army!

I noted that this week we exceeded 100,000 hits in two months. I guess the troops are loyal and ready for action.
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Postby astro » Sun May 16, 2010 9:19 pm

Hi, Dr. Sclafani,

First, I want to echo everyone’s appreciation for your work. Thank you for what you are doing!

I underwent a venogram and angio of my left and right IJV six weeks ago, and thought I’d share what I think are interesting results and ask a few questions.

My venogram was performed based on an ultrasound that indicated reflux of 1.3 seconds in my right IJV, but normal flow in my left. During the procedure, we were all very surprised when my venogram showed moderate blockage in my right (consistent with the ultrasound), but more severe blockage and an extensive network of collaterals in the left (contradicting the ultrasound).

Image

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The blockage on both sides was low, near my clavicle. If I could show you the animation, you could also see the reflux above my clavicle, including in the left IJV that had gone undetected. My right IJV was then ballooned and flow became normal. My left side blockage was ballooned in two places, and afterward the collaterals immediately disappeared.

However, a “secondary reflux” then appeared lower down, with dye shooting back up into my subclavian vein. You can see this in the “left after” picture. Strange, huh?

Since my procedure, I experienced a brief period of improvement of both cognitive and physical symptoms, but now only the cognitive improvements remain. My legs are in a decline. I am now trying to figure out why, and I hope you might be able to comment:

First, the venogram report indicated that my azygos appeared okay, but the images I have are much less conclusive (in my opinion) than the IJV images. So given your previous posting, I am suspicious that something may have been missed. Do you think it is more likely the azygos blockage was missed, or that my IJV restenosed?

Second, the “secondary reflux” which developed into the subclavian vein makes me wonder what is happening there. Since I still have reflux, do I still have blockage further down? Is this perhaps due to a valve issue? Does the subclavian relate directly to the azygos?

I feel very fortunate that I had the treatment, but my sense is that I still have an issue -- one which many of us might share -- that needs to be addressed.
Last edited by astro on Mon May 24, 2010 8:09 pm, edited 1 time in total.
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Postby girlgeek33 » Sun May 16, 2010 9:28 pm

drsclafani wrote:WEll, that was really an interesting week of discussions.

Many ideas on trials, lots of symptoms worthy of evaluating as part of trials, plenty of design ideas, some ethics, great positive activism!

Larmo was right. you are an army!

I noted that this week we exceeded 100,000 hits in two months. I guess the troops are loyal and ready for action.


We salute you as our general in this! Great knowing those also definite leaders, Joan & Michelle ( I think there are others but we haven't talked and I've only heard of others in passing, so I know you exist) Please don't let me forget our commander in chief, Dr. Paolo Zamboni, I am at your service, ready to report for duty, Where do you need me? lol
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Postby drsclafani » Sun May 16, 2010 10:01 pm

astro wrote:Hi, Dr. Sclafani,
First, the venogram report indicated that my azygos appeared okay, but the images I have are much less conclusive (in my opinion) than the IJV images. So given your previous posting, I am suspicious that something may have been missed. Do you think it is more likely the azygos blockage was missed, or that my IJV restenosed?

Second, the “secondary reflux” which developed into the subclavian vein makes me wonder what is happening there. Since I still have reflux, do I still have blockage further down? Is this perhaps due to a valve issue? Does the subclavian relate directly to the azygos?

I feel very fortunate that I had the treatment, but my sense is that I still have an issue -- one which many of us might share -- that needs to be addressed.


Nice images.
First, the narrowings are not high grade compared to many others i have seen. What is your EDSS?
I see a clear cut stuck valve on the left side. They are pesky sometimes, need cutting balloons and possibly will ultimately need stents. The reflux in the subclavian is physiological, depending upon the cardiac output, and the volume of contrast injected. The subclavian veins should not have valves there so reflux is not surprising and is seen often during these studies.

Zamboni says he is often seeing an abnormal asygous

Some of these pathologies are quite subtle

I find IVUS very helpful
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Postby Cece » Sun May 16, 2010 11:14 pm

If you were to treat all 575,000 MSers, at the pace of ten per week, it would take 1105 years. :)
"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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Postby costumenastional » Mon May 17, 2010 1:30 am

i couldnt resist :roll:

I WANT TO CLARIFY THAT DR SCLAFANI ONCE TOLD ME THAT PART OF THE CERVICAL SPINAL CORD DRAINS INTO THE JUGULAR VEINS VIA A COMPLICATED VASCULAR SYSTEM AND THAT WAS ALL.
WHAT I HAVE WRITTEN IN THE CAPTIONS IS ONLY MY OWN HYPOTHESIS AND NOTHING MORE THAN THAT.

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Dear Dr Sclafani, do you think that balloon dilation could fix such kind of malformation and hold? To my untrained eye it looks like the jugular vein has no obvious extend under the twisting...
I was ballooned down there alright, but i cant find any after images in my cds...
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Postby JOhnnybaby248 » Mon May 17, 2010 4:31 am

Dr S. The last thing I want to do is waste your time but I got to ask you to listen to this its a radio Interview with the great Dr. Freedmen the head of neurology I believe in Canada. Dr. Freedmen has to be the biggest Skeptic for CCSVI It is remarkable what kind of trash that comes out of his mouth in-regards to scanning,treatment, investigation, people dieing from treatment, and so on


The best part is he tries to explain what Drs in your field should be doing
Thats like a car Mechanic (DR Freedmen) trying to tell a Airplane Mechanic ( Dr. S) the best way to change the brakes on the plane.

He speaks about one person dying yet does not even mention the fact the Tysabri has killed well over 50 people giving them PML

So by all-means DR. S here is the link to the site with the audio link on the right hand side
http://www.am770chqr.com/Blogs/RobBreak ... D=10111605


Hey Dr. S thanks ahead of time for listen to it I am far from a Doctor but will give you this small piece of advice take small Deep breaths while listening to his rants haha Lol
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Postby Lyon » Mon May 17, 2010 4:55 am

.
Last edited by Lyon on Mon Nov 21, 2011 4:21 pm, edited 1 time in total.
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Any Volunteers?

Postby Squeakycat » Mon May 17, 2010 5:00 am

drsclafani wrote:A couple of members of TIMS are working on creating an online versions of the survey with me. We will beta test it when its finished.

And guess who I will ask to help do the beta testing? :lol:


We could use some proofreading help at this stage for the MS Quality of Life Index battery of questionnaires. If you PM me with an email address, I can send you an invitation that will give you access.

The MS QLI includes the Health Status SF-36, but it and several other of the questionnaires have been tailored specifically to people with MS.

Though no decisions have been made on whether to use this, it does have the merit of being an accepted, standard way to measure MS disability which will forestall any criticism that we are measuring the wrong things.

In addition, I have assembled all your suggestions for disabilities that we should be tracking, but saw a need to categorize them. I have done a first cut organization of the material in the form of a questionnaire and would appreciate feedback so we can then create a master inventory of MS impairments that can be noted pre-Liberation and tracked post-Liberation. Again, PM me with an email address and I'll send you an invitation giving you access to this questionnaire.

Finally, any spreadsheet gurus interested in proofing all the long and complicated scoring formulas associated with these questionnaires?
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Postby JOhnnybaby248 » Mon May 17, 2010 5:04 am

Lyon wrote:
JOhnnybaby248 wrote:He speaks about one person dying yet does not even mention the fact the Tysabri has killed well over 50 people giving them PML

Biogen: Total PML Cases At 49, Deaths At 11 As Of May 6

Read more: <shortened url>


Great Find You just proved my Point thanks....As of now 11 dead since progressive multifocal leukoencephalopathy, or PML in not curable Very Very said to say but the rest will follow May God be with them and all of us
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Postby RedfernTO » Mon May 17, 2010 5:27 am

I apologize if this has come up before. Wading through this entire thread is a bit overwhelming!

Has anyone heard/read anything re any contra-indications for CCSVI treatment? Are there any medical conditions that make either venograms or angioplasty high-risk or not possible? E.g. asthma, problems with venous flow in lower legs and feet, recovered cancer patient, diabetes, surgical implants, etc. Any specific allergies that are of concern? This is a collated list from several MSers, not all from one person!

I am sure many of use have had the thought - what if I finally get my turn and they exclude me because of "x" in my medical history.

Thanks!
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Postby CureOrBust » Mon May 17, 2010 5:49 am

drsclafani wrote:cece i hope to treat ten people a week. It might take me some time to get to that rate.
Pick up yout heels, I saw my guy (Prof Thompson) and he said he could knock off about three in a morning! "thats not a cutting balloon..."

drsclafani wrote:Zamboni says he is often seeing an abnormal asygous
ahhh... have we not learnt ya anything here? I thunk its spelt with a Z... :)
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Postby drsclafani » Mon May 17, 2010 6:30 am

CureOrBust wrote:
drsclafani wrote:cece i hope to treat ten people a week. It might take me some time to get to that rate.
Pick up yout heels, I saw my guy (Prof Thompson) and he said he could knock off about three in a morning! "thats not a cutting balloon..."

drsclafani wrote:Zamboni says he is often seeing an abnormal asygous
ahhh... have we not learnt ya anything here? I thunk its spelt with a Z... :)


but i also need time to run a department and a trauma division and eat and sleep, not that, as you can tell, i get very much of that!

I am pretty fast but it would take more than four hours to treat three patients at my hospital. my first procedure took three days ( do not ask), my next took four hours, my last procedure before shut down took 2hours 15 minutes. Almost all patients have three vein pathology and I perform IVUS and venography while KT does not do IVUS

Do i think that this can take an hour? probably down the line, perhaps by skipping the IVUS
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Postby girlgeek33 » Mon May 17, 2010 6:33 am

RedfernTO wrote:I apologize if this has come up before. Wading through this entire thread is a bit overwhelming!

Has anyone heard/read anything re any contra-indications for CCSVI treatment? Are there any medical conditions that make either venograms or angioplasty high-risk or not possible? E.g. asthma, problems with venous flow in lower legs and feet, recovered cancer patient, diabetes, surgical implants, etc. Any specific allergies that are of concern? This is a collated list from several MSers, not all from one person!

I am sure many of use have had the thought - what if I finally get my turn and they exclude me because of "x" in my medical history.

Thanks!


The only thing I have heard of from anyone being told they could not have the procedure is someone with a clotting disorder. Dr. S, is there anything they can do to go ahead with this in someone with clotting disorders?

I have also read about those with allergic reactions to the dye that is used, depending on how bad the reaction, they can use some meds in advance to avoid it. It may be that some extreme allergic reactions to the dye, may not allow someone to undergo the procedure since the dye is a must...

Hope this helps..
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