DrSclafani answers some questions

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

Postby Inge67 » Fri Mar 26, 2010 5:58 am

Dear Doc,

Here's another skeptic remark from a neurologist. He explains the the reason why they do not feel comfortable in advising patients to have the liberation treatment:

"Because we are talking dissipating veins (is that the correct translation? Draining veins?). This is an area that we do not know much about. There is a lot of knowledge about using arteries and also about ballooning these arteries. Thats is a simple procedure and there is a lot of experience in it.

On the other hand, there is less experience in ballooning dissipating veins and no knowledge on what the effects in the long run will be."

My question is simple: is this true? Do we know less about dissipating veins and ballooning them? Is that really a different ballgame?
I am looking for facts to reply with.

Thanks very much for you expert opinion.

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DrSclafani answers some questions

Postby petebou » Fri Mar 26, 2010 7:07 am

Good day,

More and more of us MSers are going abroad to get treatment. What is the typical follow-up procedure after angioplasty, so we can educate our doctors after our trip overseas ?
RRMS diagnosed '92; both IJVs ballooned and stent in azygos March 31st in Katowice, Poland.
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Postby SoberSandy » Fri Mar 26, 2010 7:27 am

Dr. Sclafani: Thank you for your precious time and thoughtful answers.
Given your vast medical/vascular knowledge and experience, in your personal and professional opinion, to what extent (in percentage) do you believe CCSVI is the cause of MS?
Would you agree to updating, by posting here, your opinion, (occasionally) as it may change, (strengthen/weaken) as time (with increasing knowledge and experience) goes on?
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Postby costumenastional » Fri Mar 26, 2010 7:36 am

Sandy, even though i totally understand your question i d like to say one thing if i may: it is not fair to ask Dr Sclafani questions related to MS. He obviously thinks that there is a link, this is why he is here, but at this point it would be a bit difficult for him to pinpoint the exact interaction between the two conditions.
Forgive me for getting in the middle and i hope Dr Sclafani will prove me wrong :)
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Postby JohnAm » Fri Mar 26, 2010 7:41 am

Dr Sclafani,

I read you first posts on the other tread and was flabbergasted when I realize who you were.

Thanks so much for communicating with us, I am learning a great deal!

A natural leader interacting with us - lucky we are indeed.

Last edited by JohnAm on Fri Mar 26, 2010 8:05 am, edited 1 time in total.
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Postby Cece » Fri Mar 26, 2010 7:49 am

Dr. Sclafani, have you treated anyone yet who is in the early stages of m.s.? If so did you find the CCSVI to not be as bad as those in worse shape with the m.s. (or with higher EDSS scores)?
"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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Postby Liber8 » Fri Mar 26, 2010 7:51 am

Dr Sclafani,

What is the number of MS patients you have looked for CCSVI in and what is the number you have found have CCSVI ? How many of these do you perform in a week?

Thought you could use a couple easy ones.
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Postby eve » Fri Mar 26, 2010 8:00 am

Dear Dr Sclafani,

Thank you for all your effort here, I've read this thread with much interest.

I have come across an interesting phenonema whilst holding my breath. I posted it here under this thread : http://www.thisisms.com/ftopict-10832.html

In short I found that my right jugular would swell up immediately when holding my breath. My healthy relatives did not have this. So I posted it on the Dutch CCSVI forum and a number of people reported back they had the same, but not their friends/family.

Now I posted it here too and I've made a short youtube clip to show what exactly happens. Some members here have found they have this too.

Can you please have a look at my clip (only 30seconds) and share your thoughts - and is it indeed my right internal jugular? It would be much appreciated.

dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Dr. Sclafani

Postby Moom9335 » Fri Mar 26, 2010 9:40 am

It appears that the people who have had continued remission of symptoms are primarily the ones who were stented. Any thoughts??
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Postby Cece » Fri Mar 26, 2010 10:07 am

drsclafani wrote:I have already begun the process of stimulating pediatricians and ophthalmogy into this topic

Thank you for this...my kids are young but I am perhaps overvigilant in looking for m.s./ccsvi symptoms in them...I had such symptoms myself at a very young age. The thought of laying down that fear and having this be preventable for them is almost too much, it is so good.
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Postby matchoo » Fri Mar 26, 2010 11:08 am

Most Excellent Dr Sclafani! I am on the list to see u but just when is not known. I may like to wait till next year so I can use my medical spending account to the hilt. I have insurance but that seems to be more a blockade then a drive thru visit. I have MedCost. Who knows how they will cover this if at all. Doing quite well with LDN, ALA iv and a host of other remedies. I also do the inclined bed but am doing so good initially I cant tell how good its working. I tell u 22 doses of Tysabri cant compare to LDN for me. I felt its effect in 2 weeks for sure. I can drink as much coffee as I want to no effect on my MS. I love coffee. Now to the questions. Cumadin scares me and I ask why must it be cumadin. How about what Simka uses in Poland which needs no doctor intervention and can be self administered, I hear it is safer but what do I know? I also question everything here since this country is an Oligarchy of big pharma. My next question is other than donating blood is there another avenue of iron chelation? Oh and one more, if covered by insurance by 50%, is the total price still 10K no matter what? What about repeat need for ballooning if recollapse of vein happens ? is that included? I think I know the answer but hey we have a great board here and lets throw it out there. I take MK-7 or k2 as MK-7 derived from natto for cardiac and artery health, fish oils too! Are both of those blood thinners? There is a warning on back of MK-7 to not take if on anticoagulant drugs such as warfarin or other medications.
Thanks for all the answers and participation. Your saving me a trip to Poland. I look forward to the train ride there from NC. Should be fun. Hope my dribble in understandable.

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Postby Cece » Fri Mar 26, 2010 11:11 am

Is it Coumadin? I thought it might be Plavix.
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Postby dlb » Fri Mar 26, 2010 11:28 am

Dr Sclafani,

Thanks for your continued help & support to us all.
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Postby Opera » Fri Mar 26, 2010 1:40 pm

Dear Dr Sclafani,

As an 18 month old I underwent a heart operation for the closure of an ASD. It was a simple straightforward operation. I am now in my mid twenties.

Do you think that this will prevent me from undergoing balloon angioplasty of the internal jugulars?

Would appreciate your thoughts
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Postby drsclafani » Fri Mar 26, 2010 8:47 pm

I emailed Euromedics to find out what they were made from and they replied saying that they were made from Cobalt.

I think that I am allergic to Nickel but am not 100% sure, can you advise me as to what to be asking? Maybe I need a blood test to see what it is exactly that I am allergic to, if so I can ask my GP?

i am sorry, this is not my expertise. I suggest that you speak with your allergist first to get some advice.
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