DrSclafani answers some questions

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

Postby jr5646 » Sun Jun 13, 2010 5:39 pm

drsclafani wrote:
Cece wrote:CureorBust, they do inflate at lower pressures when using a cutting balloon compared to a regular one, so: good question!! Maybe? The advantage of the cutting balloon comes later, when it appears to have less restenosis.

Lower pressure and less force during dilation = more likely to close immediately?

i do not think so
but remember these cutting balloons were not designed for veins. so we do not know everything about their use


No question, I promise - just a comment.. and a huge thank you too for hanging in there and going to bat for us. The presentation in Italy was great... :D

Anyway, since I have two children I was "forced" to cut the umbilical cord when they were born.. Freaked me out, btw.. The female Dr. insisted, even though I hesitated... and said since I caused this, I had to contribute something other than ..... well, you know what.. hahaha

Anyway, I was handed a pair of surgical sissors that were extremely sharp and had to use all my might to make the cut.. multiple cuts.. I'm not sure if the arteries and veins have the same thickness, but I could not imagine a cutting baloon having enough force to cut thru., but then again I could be wrong.. A quick search - the umblical cord is comprised of two arteries and one vein.. very very tough stuff.. kind of a rubbery consistency..

Just thought I'd throw that out there in case folks were worried about that "cutting" balloon.
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Postby lucky125 » Sun Jun 13, 2010 5:55 pm

Dr. S,

Welcome home! We missed you!

I saw my neuro, Dr. Tornatore on Friday. He is even more convinced of the role that the azygos plays in my walking and balance problems. What a rare and wise neuro, huh?

He thinks that the physical problems caused by a blocked azygos are strikingly similar to a cervical dural fistula. I tried to get him to explain it in plain speak, but it was way over my head. It was something about a lack of capillaries connecting the vein and artery along the spine, and identical symptoms to MS in the legs after the fix?

You speak plain English so well. Do you think that there are similarities?

His bottom line: get it fixed wherever you can!

Nicole
Last edited by lucky125 on Mon Jun 14, 2010 4:22 am, edited 1 time in total.
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 drsclafani » Sun Jun 13, 2010 6:01 pm

NZer1 wrote:Sorry to break the rules DR. Thought this was of interest to all.
http://www.facebook.com/pages/CCSVI-in- ... 0796282297
From the Hubbard Foundation

Arlene Pellar Hubbard Hi Angela,
As of last Thursday's IRB approval we can now do "one stop."
This is what you can do. Here are the steps:
1: fax or email a prescription/referral from your doctor (fax # 858 444-3599 or email hubbardfoundation@gmail.org)
2:take the CCSVI tests at AFI in San Diego. Our next available date is in July.
...3: if positive, have the catheter angiography/angioplasty the next day.
4: return to AFI for follow up testing the day after the angioplasty.
Costs:

The charges will be $2,500 for testing, $5,000-$6,000 for the IR and
$22,000 for the hospital. We do not know how much your insurance will
cover (our insurance for our son Devin covered all but $1,000 of the
hospital bill). We also know that the hospital will give a 40% discount
for patients paying cash within 30 days.
Hope this helps,
Arlene


arlene
is there a question here?

but now that you bring up cost, that is way too high, especially if repeat procedures will be needed periodically.

I will not announce a price on here and i wish others would not. that is a matter of private discussion

we need to get this cost out of the statosphere
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Re: I decided in December to have stents put in.

Postby drsclafani » Sun Jun 13, 2010 6:03 pm

larmo wrote:
drsclafani wrote:
larmo wrote:I decided in December to have stents put in. The odds of me getting restenosis will be greatly diminished.


larry
where is the proof of that.


I'm just guessing but from the hundreds of anecdotal posts I've read the restenosis didn't occur when stents were used. Seems like common sense to me to go with what works not what works mostly.


anecdotes do not count
let them publish, ie let them have their work overseen by a review board

but larry you can stick your neck out any way you want 8)
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Postby drsclafani » Sun Jun 13, 2010 6:06 pm

OK
I AM DONE SPEAKING FOR TONITE. I WILL BEGIN MY DISCUSSIONS OF MY VISIT WITH PAOLO TOMORROW

THE DOCTOR IS NOW OPEN TO READ NEW QUESTIONS :arrow:
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Postby fogdweller » Sun Jun 13, 2010 6:12 pm

drsclafani wrote:
fogdweller wrote:[ There are still a lot of Dr.'s apparently doing the surgery under the radar, and that is why a lot of us are frustrated that there aren't more courageous doctors and facilities doing the procedure.

ne addendum: After publication and approval by some important scientific group, the procedure might become "standard of care" so that every competent surgeon is supposed to try to apply this procedure. And that is not always based on huge studies. For example, inducing hypothermia in cardiac arrest patents became the standard of care after a study of only 56 patients.

in the past that was the case, but as our society has become "evidence based" things do not often become standard of care without proof.

you might call these doctors flying under the radar courageous, but i am becoming disenamoured with many of them who are just doing the procedure without intention of going to any form of trial. we owe it to society to document procedures and publish the results


Welcome back!! we missed you. It sounds as though you got lots of good information and made many important and helpful professional relationships. Your speech at the conference was wonderful. (I'll bet everbody who regularly reads this thread watched it.)

I fully agree with you about gathering data and documenting procedures, and doing as many good studies as quickly as we can. I have participated in a few studies, some of which I knew in advance provided no possible benefit for me personally.

And I agree with the obligation to provide as much scientific proof as we can, especially for insurance coverage and government coverage. However, some of us are getting older, beginning to progress more quickly, may not qualify for studies, and waiting another 3-5 years for the scientific proof to be developed is frustrating. I guess "under the radar" was a poor choce of words, but I still think someone ought to be offerering treatment and hospitals seem to shut down anyone who tries as soon as it becomes known that that is what they are doing. I also know not all highlly skilled practicioners are interested in publishing, they just like to practice their profession.

By the way, the results of that 56 patient study on cooling after cardiac arrest was statistically significant compared to historic outcomes. I am not a statistician but I think those were the groups compared...cooled vs. historic.
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Postby Cece » Sun Jun 13, 2010 6:30 pm

jr5646 wrote:Anyway, since I have two children I was "forced" to cut the umbilical cord when they were born.


Your job sounds easier... ;)

I think the cutting balloon is rather analagous to an episiotomy? As I understand it, the vein when it stretches will end up tearing some (microscopically) anyway. The cutting balloon puts the indents in place so that it's a nice controlled tear/cut.

DrS, all my questions are about the hints you've dropped of things you've learned and will share tomorrow...can't wait to read more, welcome back!
"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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gnite.

Postby 1eye » Sun Jun 13, 2010 6:37 pm

gnite.

i'm trying to thumb though davinci's notebooks.

see any leonardoes while you were there?
"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 NZer1 » Sun Jun 13, 2010 6:42 pm

One concern would be true for many of us. If it is going to take 3? years to get through the red tape, so to say and have more quality outlets for treatment, when will you retire? :lol:
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Re: gnite.

Postby drsclafani » Sun Jun 13, 2010 7:06 pm

1eye wrote:gnite.

i'm trying to thumb though davinci's notebooks.

see any leonardoes while you were there?


oneye get the first question.
no leonardos but walked into an alleyway in bologna into a courtyard, up the stairs, paintings from the sixteenth and seventeenth century, most of which would be prominently viewed in museums around the states.

the place just oozes culture
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Postby drsclafani » Sun Jun 13, 2010 7:11 pm

NZer1 wrote:One concern would be true for many of us. If it is going to take 3? years to get through the red tape, so to say and have more quality outlets for treatment, when will you retire? :lol:


retirement is off my vocabulary.. They will have to fire me or bury me :lol:

i see my role in the future in helping to define quality, education, credentialing, standarization, things like that. but before i get to that i have a lot of procedures to do, to have the experience to influence those standards

it will be interesting
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Postby drsclafani » Sun Jun 13, 2010 7:14 pm

fogdweller wrote:By the way, the results of that 56 patient study on cooling after cardiac arrest was statistically significant compared to historic outcomes. I am not a statistician but I think those were the groups compared...cooled vs. historic.


level 3 evidence, i believe.

wouldnt cut the mustard in the modern era
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Postby soapdiva884 » Sun Jun 13, 2010 7:23 pm

Did I miss it??? Has the IRB been approved?? I have been trying to catch up on all of the threads I have missed. Was away for some major surgery. Can someone clue me in please and ty?
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Postby Moom9335 » Sun Jun 13, 2010 7:35 pm

Dr. Sclafani,

Is it worthwhile, in your mind, to possibly repeat the procedure ( in the future) on some of your patients who had no improvements the first time? Do you think your discussions with Dr. Zamboni have added information that might improve their response to the procedure? And, in your collaborations in Italy, was there still agreement that the type of MS, when there is stenosis, definitely dictated the degree of improvement after the procedure?

Again, sincere gratitude for your expertise and caring involvement in our sad world of MS.
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Postby Stacemeh » Sun Jun 13, 2010 7:40 pm

Hey Dr. Sclafani,

No questions, I promise.

Welcome back and thank you so much for all you do.

:D :D :D :D :D
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