DrSclafani answers some questions

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

Postby THEGREEKFROMTHED » Thu Jul 29, 2010 5:04 am

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'?

Congratulations on your induction into the Chinese Society of IR. And on a successful symposium.

We have talked about registries before, but it has been awhile: what use do you see in a registry and in registry studies?

:)

I WAS THINKING MORE LIKE RICARDO MONTEBALN the epitome of continental elegance, charm and grace on film
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Re: Rebuttal to Annals of Neurology Article?

Postby MS_HOPE » Thu Jul 29, 2010 8:17 am

Thank you, Dr. Sclafani. this is wonderful news, and just what selkie and others need to show their neurologists. Can't wait to see the article!

drsclafani wrote:
MS_HOPE wrote:Dr. Sclafani, congratulations and thank you for the wonderful symposium!! You are a gem.
I just reread the Omar Khan (and 10 other docs'!) "Point of View" article on CCSVI and MS in the March Annals of Neurology, and I'm steaming anew. But I have a better understanding of WHY so many neurologists are closed-minded to CCSVI. THIS article is probably ALL they've read about CCSVI - yikes!

So, my question (finally!): Are there any plans that you know of for the CCSVI docs to rebut that opinion article, point by point, in that same magazine? Seems like the perfect first job for the new International Society for Neurovascular Disease (may have that name wrong)!!


The answer is yes. I believe it will be published soon.

Also, is there a way to put more of the human face into or alongside this type of article? Include case reports and anecdotes? More details on actual physical, cognitive, emotional improvements?

No, i think that a direct rebuttal of the points made is what is needed.

Lastly, I’d certainly like to see an opinion to the contrary of the neurologists’ conclusion that “invasive endovascular procedures … should be discouraged until there is conclusive evidence to justify their indication in MS”.

Is help on the way?? (To recap: Plan for rebuttal piece? Include quality-of-life data or anecdotes? Conclude that treatment is appropriate NOW in certain cases? (benefit/risk assessment)?


kill them with facts and we win
CCSVI:  Making Sense of MS
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Unilateral disease

Postby concernedwife » Thu Jul 29, 2010 12:37 pm

Dr. Scalfani:
My husband had an MRV last week which was read as normal. We were lucky enough to be able to follow that with a venogram. The right jugular and azygous were read as normal. The left jugular however was read as compressed (by an external structure measuring 3-4 cm). The radiologist balloned it, but the position went back to roughly the same since the compression was still there.
My question is:
1. How significant do you think unilateral compression/stenosis is and how aggressively should we seek treatment?
2. What are possible structures to be causing this type of compression? Nothing "abnormal" was seen on MRV. Could it be the sternocleidomastoid and can that be debulked?
Thank you.
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Postby drsclafani » Thu Jul 29, 2010 7:49 pm

selkie wrote:Dear Dr. Sclafani,


My question is, while I plan to print out the program for him also of attending physicians of Monday's symposium and your letter that you posted here (if that's okay with you), will there be published transcripts of Monday's symposium which I may also be able to print out at a later date to send him?

when the university videographer finishes the processing, i will attempt to post this symposium on line.

Is there any added information or printed material you would recommend sending my neurologist (and other physicians)?

there was article, whose reference escapes me (countdown til someone finds it) about the failure of DMDs to improve outcomes.

And again, will the symposium be transcribed on the internet at a later date?


i think it is vital that the speakers write a manuscript about their lectures. We need to get as much in medical press as possible.

Is it okay if I send him the letter you wrote to Dr. Zamboni?

i would be careful about that. I would be concerned about putting stuff like that out there. it wouldnt impress me.

Oh yes, I also intend to remind him that dialysis patients have been receiving venograms & ballooning of collapsed veins for years, however I don't know what the names of those veins are?

basilic vein cephalic vein, axillary vein, subclavian vein, superior vena cava , brachiocephalic vein, internal jugular vein


Thank you for taking the time to answer these questions.

selkie[/quote]
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Postby drsclafani » Thu Jul 29, 2010 7:53 pm

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.
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Postby bestadmom » Thu Jul 29, 2010 7:56 pm

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program with list of doctors?

Postby suzq77 » Thu Jul 29, 2010 8:11 pm

When was the list of doctor's that attended published? Some of the doctors may not be treating yet and others may be treating patients with discretion and may not want their names published...

Just a thought.
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Re: program with list of doctors?

Postby girlgeek33 » Thu Jul 29, 2010 8:28 pm

suzq77 wrote:When was the list of doctor's that attended published? Some of the doctors may not be treating yet and others may be treating patients with discretion and may not want their names published...

Just a thought.


I believe the doctors speaking is what was published. There is nothing published on the attendees listening to speakers, doctors or otherwise...

:)
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Postby drsclafani » Thu Jul 29, 2010 8:33 pm

First of all, i wanted to tell you how happy i am that you returned. I have been feeling very bad about my grouchy response to your expression of art.

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

Is dural sinus the same as sigmoid sinus???

The dura is the outer lining of the brain. it splits along some edges and forms channels where blood flows out of the brain tissue. There are many dural sinuses, the sigmoid sinus, straight sinus, transverse sinus, petrosal sinuses, cavernous sinus and others. These connect to a variety of beins, including the internal jugular vein

At least one of the patients that post in TiMS has been already found to have a completely stenosed (not clotted) sigmoid sinus. Her doctor told her that he would definitely stent it.

http://www.thisisms.com/ftopicp-123861-.html#123861


as i read this
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.


i am not willing to accept that diagnosis based upon only an mrv. Flow phenomena may give that appearance.

Is checking out the sinuses something vascular doctors plan to consolidate in the standard procedure when treating CCSVI in order to learn more?


I dont think so. catheterizing that area has risks and can be challenging, depending upon the size of the bony canal...Besides most of the lesions causing ccsvi are located low down in the neck near the confluens with the subclavian vein
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Postby drsclafani » Thu Jul 29, 2010 8:46 pm

lucky125 wrote:Hi Doc,

This is my first post, although I have read every single page of this thread.

I have a friend with Type I diabetes AND MS. She became legally blind about 6 months ago from MS, not the diabetes.

I was at the conference and remember one doctor talking about veins in the eye. I wish I could recall exactly who spoke about it, and what he said. I immediately thought of my friend as he was speaking.

Question: Would her diabetes be a contraindication for the procedure? And can you remind me who it was that spoke of veins in the eye?

Thanks for a most educational day! I feel like an expert venogram reader now!

Nicole


Ouch, now the IRs are going to be worried they will lose their jobs too!

Diabetes is a risk, but not a contraindication to the procedure. The presence of diabetes increases the risk of renal damage from the xray dye. It is not a high risk unless the patient also has pre-existing kidney disease.

i believe it was dr salvi who talked about this topic
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Postby drsclafani » Thu Jul 29, 2010 8:59 pm

THEGREEKFROMTHED wrote:
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'?

Congratulations on your induction into the Chinese Society of IR. And on a successful symposium.

We have talked about registries before, but it has been awhile: what use do you see in a registry and in registry studies?

:)

I WAS THINKING MORE LIKE RICARDO MONTEBALN the epitome of continental elegance, charm and grace on film


is that a question?
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Re: Unilateral disease

Postby drsclafani » Thu Jul 29, 2010 9:06 pm

concernedwife wrote:Dr. Scalfani:
My husband had an MRV last week which was read as normal. We were lucky enough to be able to follow that with a venogram. The right jugular and azygous were read as normal. The left jugular however was read as compressed (by an external structure measuring 3-4 cm). The radiologist balloned it, but the position went back to roughly the same since the compression was still there.
My question is:
1. How significant do you think unilateral compression/stenosis is and how aggressively should we seek treatment?
2. What are possible structures to be causing this type of compression? Nothing "abnormal" was seen on MRV. Could it be the sternocleidomastoid and can that be debulked?
Thank you.


I always assume that there is more than i can see. those just starting, more likely to miss things.
It is a familiar story, the group probably knows it by heart now.....the narrowing that was seen, was probably the impression of the carotid artery. it is usually a physiological narrowing caused by obstruction to flow further down. ..of course there are real narrowings there, including a muscle compression. But was IVUS done? how many views? was full strength contrast media used or diluted.

We should all assume there is more than meets the eye because the eye is not prepared to see everything.

I do not know where the impression that MRV is the standard came from? did your husband get a ultrasound ala zamboni?
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Re: program with list of doctors?

Postby drsclafani » Thu Jul 29, 2010 9:08 pm

suzq77 wrote:When was the list of doctor's that attended published? Some of the doctors may not be treating yet and others may be treating patients with discretion and may not want their names published...

Just a thought.


that list was not and will not be published.

not everyone wants to be an open book like i am
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Postby LauraV » Fri Jul 30, 2010 4:15 am

Dr. Sclafani,

Was it a paper or an article that you were referring to about the efficacy of DMDs aka CRAB drugs? This paper by Ashton Embry PhD says it very well. He cites three independent studies that show that DMDs have no effect on MS progression.

http://tinyurl.com/25jrtmk

Laura
And my vote is for Robert DeNiro.
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Postby drsclafani » Fri Jul 30, 2010 5:43 am

LauraV wrote:Dr. Sclafani,

Was it a paper or an article that you were referring to about the efficacy of DMDs aka CRAB drugs? This paper by Ashton Embry PhD says it very well. He cites three independent studies that show that DMDs have no effect on MS progression.

http://tinyurl.com/25jrtmk

Laura
And my vote is for Robert DeNiro.


thank you, i think it is the last two papers he refers to, one of which is not in print yet
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