DrSclafani answers some questions

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

Postby girlgeek33 » Wed Jun 16, 2010 3:58 am

Good morning Dr. Sclafani, you made the Philly Inquirer:

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Postby patientx » Wed Jun 16, 2010 4:38 am

magoo wrote:Thanks patientx :D


No problem
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Postby bestadmom » Wed Jun 16, 2010 5:51 am

GG33, thx for posting this article. This is the most positive one I've read in the US and with the large circulation of the paper, it's a huge step forward in getting the word out about CCSVI and treating it.
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Postby lucky125 » Wed Jun 16, 2010 6:03 am

bestadmom wrote:GG33, thx for posting this article. This is the most positive one I've read in the US and with the large circulation of the paper, it's a huge step forward in getting the word out about CCSVI and treating it.


I totally agree! I am about to send the author an email thanking her for her great work!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby mshusband » Wed Jun 16, 2010 6:46 am

Dr. Sclafani ... what role do you suspect the inferior vena cava could play in issues in the legs?

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?

Or am I completely off base?

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

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.
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Postby girlgeek33 » Wed Jun 16, 2010 7:18 am

lucky125 wrote:
bestadmom wrote:GG33, thx for posting this article. This is the most positive one I've read in the US and with the large circulation of the paper, it's a huge step forward in getting the word out about CCSVI and treating it.


I totally agree! I am about to send the author an email thanking her for her great work!


And the best news of all, the article starts on the front page of the paper!!!!
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Postby HappyPoet » Wed Jun 16, 2010 7:37 am

girlgeek33 wrote:And the best news of all, the article starts on the front page of the paper!!!!

Fantastic!!!! This could be the big break we've all been waiting for regarding the U.S. news media covering CCSVI. I wonder if any west coast papers will pick up the story.

EDIT: Marie McCullough, Senior Medical Writer: mmccullough@phillynews.com
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Postby magoo » Wed Jun 16, 2010 7:53 am

Girlgeek, you have just made my day!!!!
Congrats to the doctors and patients :D
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby fogdweller » Wed Jun 16, 2010 9:34 am

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?
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Postby coin » Wed Jun 16, 2010 10:00 am

girl geek...exellent and I just send this article to a geman paper to show them how they could do it as well.-)))lets keep our fingers crossed...best coin
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Postby Cece » Wed Jun 16, 2010 10:08 am

a quote from the article wrote:Still, as patients travel to India, Bulgaria, Poland, and other countries for angioplasty, they may underestimate the skill and savvy it requires.

"I did my first MS patient at the end of last year. It didn't work out too well," said Salvatore Sclafani, chair of radiology at SUNY Downstate Medical Center in Brooklyn. "The anatomy was much more complicated than I expected. I did the balloon, but she developed a [blood clot]. I sent her home on anticoagulants and said, 'I'll try again after I get more experience.' "

Since then, he's done about 20 patients - a few with "miraculous" results - and become beloved for contributing to an online MS forum.

Indeed, when he was ordered a few months ago to stop doing the procedure outside of a clinical trial, "there was an outpouring of grief, and of compassion for me," he said. "Then they got angry. So we started to dialogue about the trials and what we want to learn from them. Now they're participating in the development of the research.

"I was ready to retire," added Sclafani, 63. "But this has touched me. Now my practice will be all MS."
"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 girlgeek33 » Wed Jun 16, 2010 10:23 am

Cece wrote:"I was ready to retire," added Sclafani, 63. "But this has touched me. Now my practice will be all MS."
[/quote]

And to us, you have touched us Dr. S. Truly proving you are our rock star!!! :)

Very happy to be a part of this article. I know the reporter, the photographer and the hospital PR person were very touched seeing Nasha and I when we first got to see each other that day. We became friends, along with Janet & Felise, also in the article. But Nasha and I scheduled our appts the same day so we could get lunch together. We didn't get to see one another until I joined the interview meeting. Big smiles and hugs and all in the room were touched. See what all of this has done for everyone!? How can some be so completely cold hearted when it comes to this. It doesn't get more human than this!!!

Sorry, I know off topic... ;)
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Postby 1eye » Wed Jun 16, 2010 1:33 pm

re: infections; I have been on Amantidine since 1999 or so. The main thing I know, about what this drug does for me (besides stop me from yawning constantly), is that I think it's antiviral properties really prevent colds and flu. I used to get them regularly. Since Amantadine, I don't get more than a rare sniffle which sometimes blooms into a cold. Last winter, the H1N1 attacked our family, but we had been inoculated. Plus we had had the summer, weaker version in summer 09. That was the worst it got for me, and it was no worse than a head cold.

I get stress-triggered attacks, but it takes some fight-or-flight kind of stress which gets prolonged for some reason. One was the impending demise of the company I worked for, and the other was 911. That was interesting. The only real effect on me was that the sky was clearer, but the early hours, when nobody knew anything, were very scary. It seemed for a while, the more we knew, the worse it got.

I should say got, because I don't expect any more. Though I have had 1 in the last 3 years, the neuros seem to agree. The graph is like a ramp superimposed on a sawtooth wave, and eventually the sawteeth disappear because the ramp gets higher than the saw. Good. Fewer nasty surprises.

But if there are more buidings attacked, I won't be betting on not having another one. I never was convinced about the different types of MS. While they may make generalizations easier, I think the groupings don't do much for treatment. They are really actuarial designations. CCSVI is likely to have started before birth, and everyone is different, like fingerprints. I know, I'm just another anecdote.

Hope all is well, Dr. Sclafani...
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby SaintLouis » Wed Jun 16, 2010 1:56 pm

Hi Dr. S. -

I'm wondering if blood drainng out of the brain/skull is blocked or slowed, does this cause an increase in pressure of CSF in the brain since somehow CSF is absorbed back in the blood?

Could that be why many of MS'ers symptoms parallel those of people with increased intracranial pressure to some degree - even if it is just a slight constant pressure increase? And why opening up those veins relieves some of those common symptoms?

Thanks.
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Postby Cece » Wed Jun 16, 2010 4:34 pm

Here is Zamboni's research paper on cerebrospinal fluid, if it helps...
http://www.fondazionehilarescere.org/pdf/VHISS-CSF.pdf

I am curious too about what happens when the inferior or superior vena cava get blocked...my guess is that since they are bigger the blockage causes a more immediate problem and doesn't get to go on for decades the way the smaller veins' blockages do?

I am also once again holding my breath for IRB news. I do this a lot, around here. ;)
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