DrSclafani answers some questions

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

Postby drsclafani » Wed Jul 28, 2010 7:06 pm

ACE wrote:Saint Louis a Venogram, does not look inside the head or Brain, it goes through the Femoral vein up through the heart the right atrium the Asygos
then into each Jugular vein......nothing to do with the head or Brain....Dr Haacke has written a program to measure Iron deposits in the Brain via an MRI and SWI ....perhaps this is confusing you.


That is not quite accurate, ace. actually we can opacify and see the dural sinuses which are channels that drain the blood of the brain and pass it on, out of the skull into the jugular and vertebral veins.

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.
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Postby girlgeek33 » Wed Jul 28, 2010 7:44 pm

Dr S, any issues with your university or the Doctors with online posting of the Symposium video I took?
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Postby bestadmom » Wed Jul 28, 2010 7:51 pm

I vote for John Travolta, although since Dr. S is my rock star, it might have to be Mick Jagger.
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Re: Risks?

Postby drsclafani » Wed Jul 28, 2010 8:03 pm

msrelly wrote:First - thank you Dr. Sclafani for being such a patient, generous and willing teacher and advocate. All of us who have been touched by MS will be forever in your debt.

My close friend is ready/willing/able to have another balloon procedure done if he restenoses. I’m a worry wart (my ex had an angio—it didn’t go well……) about stuff going wrong, but also about the radiation from multiple procedures. Is there any risk to having more than one procedure, either from radiation or from having a wire travel through your veins over and over? How many times can he have this done?

gratefully,
msrelly


There is risk to everything in life. Driving a car, taking a bus, climbing a latter, answering a doorbell. We choose to take those risks when the potential benefit of our actions or circumstances are greater than the likelihood of risk. So while there is risk of radiation, and risk of injury while wires travel through your veins, those risks are very small. Certainly the potential for benefit makes taking that risk worthwhile.

How many times? There are veins that we treat every three months in patients with kidney failure. We do not yet know how often patients will need reangioplasty after liberation. [/b]
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Re: Rebuttal to Annals of Neurology Article?

Postby drsclafani » Wed Jul 28, 2010 8:10 pm

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
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Postby drsclafani » Wed Jul 28, 2010 8:15 pm

girlgeek33 wrote:Great letter Dr. Sclafani and it was a great event!!!

What are your thoughts for adding a west coast event so that more Doctors can be reached?


i think it is a great idea. We just need to have some champions come forward.
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Postby welshman » Wed Jul 28, 2010 8:16 pm

Dr S, glad to read from your message to Dr Zamboni that the Symposium was what seems to be a huge success. I know you've reiterated many times that knowledge and expertise are truly needed by anyone setting themselves up to treat the CCSVI condition; the fact that your symposium was attended by (presumably) physicians from Mexico and Costa Rico, might you be changing your opinion with the knowledge that these physicians do want to learn more about the testing and treatment ? Obviously right now the Clinics in those Countries that have been established have a much less waiting time for treatment, and travel is certainly easier from North America vs going to Poland, Bulgaria or India. I know you won't want to give an opinion on the ability of physicians you don't know, but the fact they attended your Symposium to learn more must be promising for improved treatment outside N.America.
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Postby Algis » Wed Jul 28, 2010 8:20 pm

Doctor: if you stop by Taipei; give me a ring we'll go out for dinner :D
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Postby selkie » Wed Jul 28, 2010 8:46 pm

Dear Dr. Sclafani,

I read with great interest your comments and also your letter to Dr. Zamboni after Monday's symposium.

I have had zero luck getting my neurologist to take interest in CCSVI and he says, quote, "nothing much will come of it".

I've printed out for him the original research paper published by Dr. Zamboni et al in Dec 2008 (which he never read) and also the article from Endovascular Today called "CCSVI: A New Paradigm and Therapy for Multiple Sclerosis" by you et al (which I haven't sent him yet).

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?

I tried to get him to watch the original CTV-5 interview with Dr. Zamboni, which he refused.

I want him to read these things so that he may refer me to one of the experienced IRs in the hope that my insurance will reimburse me partially for the expense of seeking treatment as this will be a financial hardship on me (I'm on SSDI), as it will be on many people.

If he refuses to help me, I'm going to send copies of everything and a letter stating that he has declined to refer me to my PCP, the medical clinic they are part of, and my insurance company (I have an HMO through my husband's employer).

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

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

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

Is there any other printed material I can access online to convince him?

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?

I am in Hawaii and to the best of my ability to find out, no IR is familiar with CCSVI to test or treat it, so I must be referred out of state as far as I know.

Thank you for taking the time to answer these questions.

selkie
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WOW

Postby ACE » Wed Jul 28, 2010 9:03 pm

Wow thanks Doc I did not know that about the Dural sinuses.......makes sense though....thanks
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Postby HappyPoet » Wed Jul 28, 2010 11:52 pm

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
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Cerebral venous sinus thrombosis

Postby PointsNorth » Wed Jul 28, 2010 11:56 pm

Cerebral venous sinus thrombosis (WIKI) worth a read

http://en.wikipedia.org/wiki/Cerebral_venous_sinus_thrombosis

Epidemiology
Cerebral venous sinus thrombosis is rare, with an estimated 3-4 cases per million annual incidence in adults. While it may occur in all age groups, it is most common in the third decade. 75% are female.
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Postby HappyPoet » Thu Jul 29, 2010 12:04 am

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

See Cece, I told you!
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Postby costumenastional » Thu Jul 29, 2010 5:35 am

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?
Is dural sinus the same as sigmoid sinus???

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

Is checking out the sinuses something vascular doctors plan to consolidate in the standard procedure when treating CCSVI in order to learn more?
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Postby lucky125 » Thu Jul 29, 2010 6:01 am

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
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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