DrSclafani answers some questions

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

Postby Cece » Fri Jun 11, 2010 7:33 am

mshusband wrote:I'm sorry, I know we all love Dr. Sclafani's thread as evidenced by it not leaving the first page in months now ... but can't we keep it to asking him questions and not a discussion page? He is very gracious to come here and help anyone with questions regarding CCSVI and further our knowledge ...

But I feel he will have to wade through pages and pages of information now to find a question and something could be missed that someone could find very important.

Please, let's keep this thread to its intended topic.

Respectfully ...

You know, I was 8O when I realized no one had posted between my 3 posts on the page before...then I was looking to see if I could delete one and combine it with the others, but my third one was the only one that could be deleted and that was the only really relevant one...then I let it go and went to bed.

DrS has weighed in on this before, once to say that we should take the lead on the discussion (about trials) while he'd been busy for a bit...going so far as to call it "Dr Sclafani asks some questions"...and once to say he encouraged discussion within reason...but it is a valid point that questions may get missed.

Maybe the answer is not to limit the discusion (except within reason) but to repost the questions if they are missed? It is unusual for him to be gone this long...

I've run out of questions to ask...he's covered a lot of ground here...and I never have an MRV image of my own to post! Total jealous.
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Postby magoo » Fri Jun 11, 2010 7:42 am

mshusband wrote:I'm sorry, I know we all love Dr. Sclafani's thread as evidenced by it not leaving the first page in months now ... but can't we keep it to asking him questions and not a discussion page? He is very gracious to come here and help anyone with questions regarding CCSVI and further our knowledge ...

But I feel he will have to wade through pages and pages of information now to find a question and something could be missed that someone could find very important.

Please, let's keep this thread to its intended topic.

Respectfully ...


DITTO.
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 Needled » Fri Jun 11, 2010 8:35 am

Maybe the answer is not to limit the discusion (except within reason) but to repost the questions if they are missed? It is unusual for him to be gone this long...

Cece, I think we all know what he's been doing this week and why he hasn't been posting.
This is not directed at anyone, but can we PLEASE keep the chatter down so Dr. S. can actually find and answer actual questions? Re-posting them is not the answer. THOUGHTFUL discussion is great and what we're here for, but even more important is hearing what the good doctor himself has to say, not reposting people's questions or answering questions for him. The chatter is getting out of hand...my opinion only. I don't mean to offend anyone and sorry if I did.
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Postby pklittle » Fri Jun 11, 2010 11:59 am

magoo wrote:
mshusband wrote:I'm sorry, I know we all love Dr. Sclafani's thread as evidenced by it not leaving the first page in months now ... but can't we keep it to asking him questions and not a discussion page? He is very gracious to come here and help anyone with questions regarding CCSVI and further our knowledge ...

But I feel he will have to wade through pages and pages of information now to find a question and something could be missed that someone could find very important.

Please, let's keep this thread to its intended topic.

Respectfully ...


DITTO.


Double ditto. :)
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Postby Cece » Fri Jun 11, 2010 3:05 pm

:(
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CCSVI #1 in Portugal. Some questions.

Postby mike70 » Fri Jun 11, 2010 6:00 pm

Dear Dr. Sclafani,

In about two weeks I believe I'll be the first patient to be treated here in Portugal. My Dr is a very experienced Phd Interventional Radiologist who has already done me a venography and found out that both my jugulars and azygos have stenosis. I've read a lot about this procedure and I believe that I'm well informed. But I still have doubts concerning the use of stents. He said that he will use one on my left jugular (is almost blocked) and perform ballooning on the right and azygos. I've never ever found anything about ballooning the azygos, but I know that is one of the veins Dr Zamboni points as problematic. Can you please enlighten me about the azygos ballooning.

Thank you very much
Last edited by mike70 on Sat Jun 12, 2010 4:51 am, edited 1 time in total.
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Postby HappyPoet » Fri Jun 11, 2010 7:18 pm

.
Everyone should read again our good doctor's first post on this thread, which is his thread:
drsclafani wrote:...Thus i created DrSclafani answers some questions where patients and their caregivers could share concerns and questions and hopefully find some answers.

Dr. Sclafani believes in compassion as he said on 3/26/10 to someone who complained about other people's posts:
drsclafani wrote:i would suggest that it means that someone feels very passionate about the topic
keep the focus but be compassionate of others who write here

~Poet
.
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Postby drsclafani » Fri Jun 11, 2010 7:38 pm

mshusband wrote:I'm sorry, I know we all love Dr. Sclafani's thread as evidenced by it not leaving the first page in months now ... but can't we keep it to asking him questions and not a discussion page? He is very gracious to come here and help anyone with questions regarding CCSVI and further our knowledge ...

But I feel he will have to wade through pages and pages of information now to find a question and something could be missed that someone could find very important.

Please, let's keep this thread to its intended topic.

Respectfully ...
its almost six am and I am on a line at airport. I will go thru most important questions of week and respond to them. And about 1000 emails on sunday. If your question isn't answered. Ask it again after tuesday. I will announce irb as soon as I know the update
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Postby drsclafani » Fri Jun 11, 2010 7:51 pm

mshusband wrote:I'm sorry, I know we all love Dr. Sclafani's thread as evidenced by it not leaving the first page in months now ... but can't we keep it to asking him questions and not a discussion page? He is very gracious to come here and help anyone with questions regarding CCSVI and further our knowledge ...

But I feel he will have to wade through pages and pages of information now to find a question and something could be missed that someone could find very important.

Please, let's keep this thread to its intended topic.

Respectfully ...
its almost six am and I am on a line at airport. I will go thru most important questions of week and respond to them. And about 1000 emails on sunday. If your question isn't answered. Ask it again after tuesday. I will announce irb as soon as I know the update
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Re: CCSVI #1 in Portugal. Some questions.

Postby girlgeek33 » Fri Jun 11, 2010 9:02 pm

mike70 wrote:Dear Dr. Sclafani,

In about two weeks I believe I'll be the first patient to be treated here in Portugal. My Dr is a very experienced Phd Interventional Radiologist who has already done me a venography and found out that both my jugulars and azygos have stenosis. I've read a lot about this procedure and I believe that I'm well informed. But I still have doubts concerning the use of stents. He said that he will use one on my left jugular (is almost blocked) and perform ballooning on the right and azygos. I've never ever found anything about ballooning the azygos, but I know that is one of the veins Dr Zamboni points as problematic. Can you please en light me about the azygos balloning.

Thank you very much


So great to hear that Portugal is jumping on the Liberation Express! ;) Azygous has been covered on here. Quite a few people that have been talking about the Liberation have had teh azygous ballooned. From what I've been reading, it seems that it is easier for the azygous to balloon and not have restenosis. Someone recently posted about it and Zamboni's findings were about 3% of the azygous veins ballooned reverted and had restenosis.
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Postby girlgeek33 » Fri Jun 11, 2010 9:04 pm

drsclafani wrote:its almost six am and I am on a line at airport. I will go thru most important questions of week and respond to them. And about 1000 emails on sunday. If your question isn't answered. Ask it again after tuesday. I will announce irb as soon as I know the update


Don't forget to get some well deserved rest!

Have any thoughts on the NMSS grants awarded for studies that only perform testing? No funds granted for treatment in North America! And the funds are for the next 2 years!
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Postby IbRiz » Sat Jun 12, 2010 5:12 am

Hi Dr Sclafani

This cutting balloon you are sometimes using - is it not risky to use? I mean - what if you perforate the vein - could the patient not risk bleeding out?

Over here (EU) we have a certain german dr, who peforms the CCSVI procedure. He has however expressed concerns about perforating the vein, causing the patient to bleed to death!

Thanks - Christian
RRMS Dx'd 2009
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Postby Cece » Sat Jun 12, 2010 7:20 am

IbRiz wrote:This cutting balloon you are sometimes using - is it not risky to use?

drsclafani wrote:Today I learned something new in my treatments. I thought i would share.

I have been concerned about incomplete dilatation of the veins when using venous angioplasty, expecially when i think the problem is incompletely opening valves. Sometimes even with very large balloons, i have been dissatisfied with the amount of widening i achieve.

Today I added a cutting ballloon to my amamentarium of tools for use in liberation. This balloon has some sharp edges of metal attached to the balloon. When the balloon is opened, the metal presses into the tissues. it creates a indentation. After creating the creasing of the vein or valve, I then went to my usual 14 millimeter high pressure balloon and the vein dilated so easily and smoothly. it was like buttah! and created a very large venous confluens.

Is this a consistent benefit? Is there any new risk? Will this reduce recurrent stenosis?

time will tell but I got really excited about this one.
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Postby Nunzio » Sat Jun 12, 2010 11:33 am

This is a youtube video in English and Italian from somebody well known to us
http://www.youtube.com/watch?v=cw1DtRsOTbk
enjoy
but is only audio
this is part 2
http://www.youtube.com/watch?v=l9pUA-j6bWw&feature=related
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Postby blossom » Sat Jun 12, 2010 12:14 pm

dear dr. sclafani, i have never posted you before. i just have to tell you how much i appreciate you communicating with us. you never quit amazing me with intelligence, compassion and patience and a lot of good old common sence-which i have not come across with many of the doctors in my long rocky road of ms. it has been a trail of tears for many of us and by doctors like you stepping up-- hopefully that trail of tears will become a trail of just bad memories and will be filled with smiles. medicine has come a long way but unfortunatly common sence has somehow been put to the side at times. but you and others are changing that. i hope to soon meet you and you can help this old BLOSSOM bloom again. THANK YOU AND MAY THE WIND ALWAYS BE AT YOUR BACK.
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