DrSclafani answers some questions

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

Postby suzq77 » Fri Jul 30, 2010 7:11 am

Here's what he found on my MRV - my right sigmoid sinus (see this link; it's labeled "PARS SIGMOID": http://en.wikipedia.org/wiki/File:Gray488_blue.gif) is ALMOST COMPLETELY OCCLUDED - to the point where all of the blood is draining on the left side. He said it's something he can fix and while he's in there he'll also look at my upper left IJV and balloon again if needed.

He didn't see it on the venogram because he was only looking at my jugulars - the highest he went was right below it.


Dr. Scalfani's response:
i am not willing to accept that diagnosis based upon only an mrv. Flow phenomena may give that appearance.

*******************************************
I was the one who posted about my sigmoid sinus problem.

I spoke with my IR last night and he said the symposium was "wonderful" and "very informative". He was so glad he went and he found some new ways to treat.

The consensus: no one is treating intracranially right now. The shape of the sigmoid (like an "s") makes it very hard to have a rigid stent placed. But he still wants to have a look to see if what he saw on the venogram is actually there. He may treat it would with a low profile balloon, with a neuro IR as part of his team.

Additionally, he wants to go back in and look at my azygous, the valves at the base of each jugular and my left upper IJV which had appeared as though it'd just minimally restenosed on my follow up MRV.

So this will be within a few weeks. I remain ever-hopeful!

A thousand thank you's to Dr. S for hosting on Monday!
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Postby Nunzio » Fri Jul 30, 2010 9:09 am

drsclafani wrote:
costumenastional wrote:
drsclafani wrote:There is some controversy about whether ccsvi affects the dural sinuses. Sometimes it appears on MRV that the sinuses are narrowed or occluded. This needs to be clarified and understood. And stenosis of jugular veins is reported to be associated with dural sinus thrombosis, leading to mental confusion and memory problems, loss of balance, and fatigue that resolves after the thrombus is dissolved and the jugular stenosis is angioplastied.


Dear doctor Sclafani, could you share more with us about this matter?
Did you discuss about this in the symposium?

only very little

I do have the same problem in my transverse/sigmoid sinus;I think at one point you mentioned Dr. Zamboni saying that he thinks the jugular vein stenosis came first and dilating the vein helps the situation. Initially I thought the sinus thrombosis came first and the poor flow caused the jugular vein to be narrow but I know Dr. Zamboni is always right.
Thank you for sharing your knowledge with us
Last edited by Nunzio on Fri Jul 30, 2010 12:02 pm, edited 1 time in total.
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all Cece's questions....

Postby Cece » Fri Jul 30, 2010 10:15 am

drsclafani wrote:But was IVUS done? how many views?

I think, that you ask this question, it shows your own belief that IVUS adds useful information; you've got me convinced as well. But if people here want to be treated by a doctor using IVUS, it is still true that nobody is using IVUS? How did the gathered doctors respond to your speech on IVUS?

Lately with the emergence of so many more docs on the field, they all have different strategies. I know of a doc doing unilateral ballooning, so if both jugulars need ballooning, he schedules them for different days. (This is quite cautious?) I know of Dr. Sinan's seemingly brilliant strategy, where he balloons aggressively in the azygous and uses larger sized balloons...I asked before what you thought of that one, but maybe it is too early or impolite to be asked to evaluate other docs' strategies?

I have been working my way through some of girlgeek's videos. Fantastic stuff. Some things that caught my attention:
* You saying "Shame on us" for not following up on old old research showing the venous/MS connection. Great speech.
* None of the speakers were subsidized? Not even their travel expenses covered? If you are able to do this next year, will this change?
* What did you think of the question asked to Dr. Salvi, I believe, about diabetes (?) research from the 90s that showed that when blood flow was cut off to nerves, their functioning decreased and when it was restored, it improved? This is relevant to what is being found with immediate improvements in CCSVI, isn't it?
* Dr. Haacke talked about that since arteries bring in blood at high speeds and it leaves in the veins at low speeds, you need about four times as many veins as you do arteries. Not sure if I got that exactly right. Is he right about this and does this support the argument that veins are much more important than previously thought?
* If carotid stenting testing was originally done with less-than-optimal techniques and therefore not proven as strongly as it later was, how did this affect the implementation of carotid stenting? Did it still get put into practice fairly quickly or was it slower than it could have been? We might've talked about this before, I can't fully remember.

I have more, but maybe that is enough for now.... :wink:

Glad you're back, can't thank you enough for what you're doing to move CCSVI forward for all of us.
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Postby Nunzio » Fri Jul 30, 2010 1:49 pm

Image
This is a picture from my MRV with a view from the top.
The top of the image shows my left sinus and the bottom shows the right one which is considerably smaller.
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Postby Nunzio » Fri Jul 30, 2010 2:00 pm

Image
This is a view from the front again showing my right sinus and jugular vein smaller than my left sinus and jugular vein.
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Postby Nunzio » Fri Jul 30, 2010 3:02 pm

Now I am going to show more of a lateral view.
It shows that just after the right jugular vein exit the skull, the main trunk is blocked and not visible,and 2 collateral inserting almost at 90 degrees take over.Image

The next one is a more lateral view:Image

and then a side view:
The question for Dr. Sclafani is if he can give us his interpretation and if he think there is hope in dilating the right jugular vein.
Thanks againImage
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Postby drsclafani » Fri Jul 30, 2010 8:22 pm

suzq77 wrote:
Here's what he found on my MRV - my right sigmoid sinus (see this link; it's labeled "PARS SIGMOID": http://en.wikipedia.org/wiki/File:Gray488_blue.gif) is ALMOST COMPLETELY OCCLUDED - to the point where all of the blood is draining on the left side. He said it's something he can fix and while he's in there he'll also look at my upper left IJV and balloon again if needed.

He didn't see it on the venogram because he was only looking at my jugulars - the highest he went was right below it.


Dr. Scalfani's response:
i am not willing to accept that diagnosis based upon only an mrv. Flow phenomena may give that appearance.

*******************************************
I was the one who posted about my sigmoid sinus problem.

I spoke with my IR last night and he said the symposium was "wonderful" and "very informative". He was so glad he went and he found some new ways to treat.

The consensus: no one is treating intracranially right now. The shape of the sigmoid (like an "s") makes it very hard to have a rigid stent placed. But he still wants to have a look to see if what he saw on the venogram is actually there. He may treat it would with a low profile balloon, with a neuro IR as part of his team.

Additionally, he wants to go back in and look at my azygous, the valves at the base of each jugular and my left upper IJV which had appeared as though it'd just minimally restenosed on my follow up MRV.

So this will be within a few weeks. I remain ever-hopeful!

A thousand thank you's to Dr. S for hosting on Monday!


The IRs are quickly catching up to the patient's understanding of CCSVI!
But you have had a head start :D :D
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Re: all Cece's questions....

Postby drsclafani » Fri Jul 30, 2010 9:30 pm

Cece wrote:
drsclafani wrote:But was IVUS done? how many views?

I think, that you ask this question, it shows your own belief that IVUS adds useful information; you've got me convinced as well. But if people here want to be treated by a doctor using IVUS, it is still true that nobody is using IVUS? How did the gathered doctors respond to your speech on IVUS?


IVUS is not reimbursed by insurers and the catheter is quite expensive (about $650). The IVUS unit is also expensive. These costs have to be absorbed by someone. Let me ask you this: if you had to pay for the catheter as an extra, would you pay it?

Lately with the emergence of so many more docs on the field, they all have different strategies. I know of a doc doing unilateral ballooning, so if both jugulars need ballooning, he schedules them for different days. (This is quite cautious?)

this is quite proposterous!

I know of Dr. Sinan's seemingly brilliant strategy, where he balloons aggressively in the azygous and uses larger sized balloons...I asked before what you thought of that one, but maybe it is too early or impolite to be asked to evaluate other docs' strategies?


Tariq has not yet shown outcomes using those large diameters of dilatation. He did show, however, that the vein could tolerate those diameters . It was very helpful to see that the frontier.

I have been working my way through some of girlgeek's videos. Fantastic stuff. Some things that caught my attention:

The SUNY videographer is taking a long time. I hope that we can get the entire conference on internet asap.

* You saying "Shame on us" for not following up on old old research showing the venous/MS connection. Great speech.

Shame on all of us. Lots of MSers missed it too. But its old stuff. Now let's drop the shame and preoccupation with blame and anger, and focus on the next phase of discovery. A hell of a lot to do. I am so looking forward to treating again.

* None of the speakers were subsidized? Not even their travel expenses covered? If you are able to do this next year, will this change?


Absolutely nothing. Dr Petrov volunteered to come from bulgaria. arrived on sunday night, returned on monday night. Dr. Siskin drove from albany starting at 5am monday, returned after dinner to albany at 10pm.
Isnt that amazing. Such great altruism was just demonstrated!. Brings tears to my eyes.

NOT ONE DOLLAR FROM PHARMA OR CATHETER COMPANIES, OR ANGIO OR ULTRASOUND EQUIPMENT MANUFACTURERS.

I cannot afford this every year. The next one will require an entry fee of some form and we will surely have to fund some transportation as we bring more people together.

* What did you think of the question asked to Dr. Salvi, I believe, about diabetes (?) research from the 90s that showed that when blood flow was cut off to nerves, their functioning decreased and when it was restored, it improved? This is relevant to what is being found with immediate improvements in CCSVI, isn't it?


i am going to have to review the videotape before i make comments on that one.

* Dr. Haacke talked about that since arteries bring in blood at high speeds and it leaves in the veins at low speeds, you need about four times as many veins as you do arteries. Not sure if I got that exactly right. Is he right about this and does this support the argument that veins are much more important than previously thought?


what goes in must come out. if it goes in faster than it comes out, then there need to be more vessels taking it out, or they have to be of bigger cross sectional diameter ....its like you kitchen faucet: it enters the sink really fast, but it goes out slower....thus the larger drain


* If carotid stenting testing was originally done with less-than-optimal techniques and therefore not proven as strongly as it later was, how did this affect the implementation of carotid stenting? Did it still get put into practice fairly quickly or was it slower than it could have been? We might've talked about this before, I can't fully remember.


we have spoken about this. The original carotid stenting that was approved by CMS required that a vascular surgeon certify that the patient was not a candidate for surgery. Carotid stenting was relegated to secondary status of limited use because the initial trials showed that percutaneous stenting had more risks than open surgery. Some of the initial trials compard surgery done by experts against stenting done by people who had done as few as four cases. self defeating prophesy.

Now, as the next generation of trials is done comparing experienced operators of both methods, stenting is shown to have fewer complications.

Sound familiar? Lets wait on the RCTs

I have more, but maybe that is enough for now.... :wink:

Glad you're back, can't thank you enough for what you're doing to move CCSVI forward for all of us.


you aint seen nothin yet
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Postby PCakes » Fri Jul 30, 2010 9:41 pm

Cece wrote:
drsclafani wrote:yes, i have thought about it too. this would make a good novel, perhaps even a movie. cece, interested?

Maybe George Clooney as 'Sal Sclafani'?


:)


hmm.. genius intellect..easy on the eyes.. razor sharp wit.. Robin Williams..!
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Postby drsclafani » Fri Jul 30, 2010 9:42 pm

Nunzio wrote:Image
This is a picture from my MRV with a view from the top.
The top of the image shows my left sinus and the bottom shows the right one which is considerably smaller.


Bring it on nunzio

dilate the jugulars and then see if flow improves in the sinuses
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Re: all Cece's questions....

Postby Cece » Fri Jul 30, 2010 9:46 pm

drsclafani wrote:IVUS is not reimbursed by insurers and the catheter is quite expensive (about $650). The IVUS unit is also expensive. These costs have to be absorbed by someone. Let me ask you this: if you had to pay for the catheter as an extra, would you pay it?

Good question, had to think about it, but yes. If I trusted my doctor and during the procedure he said it was necessary, yes. Because I have read that for the people for whom it catches something that was going to be missed, it is priceless.

edited to add: if we are talking about just the $650 for the catheter, then yes, absolutely, even planned from the beginning. My first reponse was for if I was covering the ivus and the catheter, then maybe I'd want to wait to see if it seemed necessary while things were underway.
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Re: all Cece's questions....

Postby hope410 » Fri Jul 30, 2010 10:59 pm

drsclafani wrote:IVUS is not reimbursed by insurers and the catheter is quite expensive (about $650). The IVUS unit is also expensive. These costs have to be absorbed by someone. Let me ask you this: if you had to pay for the catheter as an extra, would you pay it?


Yes, I would pay for it, no question, you've convinced me of its utility. I would want to leave no stone unturned, at least to the extent of available knowledge. If NOT using IVUS might mean missing something, I would want it used, and I would be more than willing to pay for it. Can I ASK my doctor to use it even if it's not a part of his/her normal practice?

After all, if we ALL start having it used, maybe the extra demand for it might drop the price per unit down a bit? :)
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Postby Algis » Fri Jul 30, 2010 11:24 pm

Ditto (Hope)
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Postby newfie-girl » Sat Jul 31, 2010 6:07 am

Count me in, when it comes to your health, leave no stone on turned. :wink:
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Postby HappyPoet » Sat Jul 31, 2010 6:46 am

Hello Dr. Sclafani,

drsclafani wrote:
HappyPoet wrote:Congratulations, Dr. S! Overwhelming successes are everywhere:

Endovascular Today "CCSVI A new paradigm and therapy for multiple sclerosis"
Inaugural SUNY Downstate CCSVI Symposium
CCSVI Alliance
International Society of Neurovascular Disease
First Honorary Inductee into Chinese Society of Interventional Radiology

It seems I owe you a question. :wink:
~HP

yet it is still bittersweet. I will not be happy until i can treat patients again.

This is one of the many reasons we love you.


Here is the question I owe you:

drsclafani wrote:
Cece wrote:Lately with the emergence of so many more docs on the field, they all have different strategies. I know of a doc doing unilateral ballooning, so if both jugulars need ballooning, he schedules them for different days. (This is quite cautious?)

this is quite proposterous!

Now I'm quite terrified! Can you please be more specific?
Thank you.

~HP
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