DrSclafani answers some questions

[NHE]

The title of this thread is "Dr. Sclafani answers some questions." Let's keep the discussion focused on questions for Dr. Sclafani.

I started this thread because i saw some misinformation regarding CCSVI and its treatment being shared by two patients. I felt compelled to set the record straight and this led to an outpouring of expressions of interest and curiosity. I found myself answering questions on many threads and was getting lost. Thus i created DrSclafani answers some questions where patients and their caregivers could share concerns and questions and hopefully find some answers.

NHE

[Lyon]

..

[WeWillBeatMS]

Dr Sclafani,

Three questions:
#1)So in addition to the backflow of blood going back into the brain, is there blood that also leaks out of the veins? Maybe I misunderstood.

actually that theory remains only a theory. there are other components thgat have arisen, such as dysfunctional drainage of csf.
theories are interesting, but the bottom linle is much much more. ARe patientss improved based upon angioplasty.

Also in the interview you say that you are skeptical, and although I can't hear the interviewer's question, I believe you were saying that you were skeptical about treating CCSVI. #2)Do you still feel skeptical today?

I am no longer skeptical that something happens after angioplsty. it is not in all patients but sufficient numbers improve after angioplasty.

#3)Lastly, how many patients had you treated at the time of that interview? and how many today?

OK so the last question was kind of a two for one.

Thanks,

WeWillBeatMS

at the time of the interview i had treated about 30. I have now treated more than 150 patients now treat more than than ten patients per week. and my colleagues at aac have treated more than 600.

i still think that we do not have universal agreement on technique, but i am very comfortable with what i do now.

Dr Sclafani,

Thank you for answering my questions.
I also want to thank Mrs. Sclafani who has sacrificed much of her time with you because of your love and dedication to people with CCSVI and/or MS.

Your decision to wrap up your career by serving pwCCSVI & pwMS is a noble one. You and all the other MDs, chiropractors, nurses, PhDs, cheerleaders, etc here in TIMS are truly meeting the definition of "doctor" by taking the time to educate the patient here.

I'm looking forward to meeting you and introducing you to my lovely wife and my not so lovely veins on June 11th in Brooklyn.

WeWillBeatMS

[WeWillBeatMS]

I forgot to mention the DOs and ODs in my list of doctors and I also wanted to put the definition of the word Doctor: The word is originally an agentive noun of the Latin verb docēre (Latin pronunciation: [dɔk'e:rɛ], 'to teach'). Most of us know this but just as a reminder because we've all met with so many doctors who don't take any time to teach us and even treat us like a nuisance and idiots for asking questions. Thank you for teaching us Dr S.

Also, you clearly have the most experience performing the ango on pwCCSVI since you've done 150 of the 600 procedures within AAC. Do you speak with these other doctors at AAC to compare techniques and comment on cases? I have a cousin in Chicago who's husband has MS, do you know how many procedures Dr Angelo Makros has done?

WeWillBeatMS

[HappyPoet]

Lyon, when you disrespect Dr. Sclafani, I take it personally, very personally, and I sent PMs to both moderators asking for your post to be removed and for your banishment from TIMS.

Asher, when you disrespect Dr. Sclafani, I take it personally, very personally, and I sent PMs to both moderators asking for your posts to be removed.

[Kleiner]

Asher/Lyon,

No one here is demanding you to take the advice or benefit from the education that Dr. Sclafani is providing on this thread. If you find it offensive or "illegal" in any way just stay away.

Clearly, with over 500,000 views, this thread is helping people out there. People who cannot get this kind of education or assistance from their own doctors and most definitely people who do not want to wade through your nonsense to get some good information.

Dr. Sclafani does not need to do this but he does and certainly does not deserve to vilified for his efforts.

[WeWillBeatMS]

Dr Sclafani,

Three questions:
#1)So in addition to the backflow of blood going back into the brain, is there blood that also leaks out of the veins? Maybe I misunderstood.

actually that theory remains only a theory.

Is there a name for this theory? LVS, leaky vein syndrome?

WeWillBeatMS

[drsclafani]

Thread saved 10:07 AM EST
I'm officially asking to be put in contact with a thisisms Administrator because I'm convinced we have some legal issues involved here.
Bob

The title of this thread is "Dr. Sclafani answers some questions." Let's keep the discussion focused on questions for Dr. Sclafani.

I started this thread because i saw some misinformation regarding CCSVI and its treatment being shared by two patients. I felt compelled to set the record straight and this led to an outpouring of expressions of interest and curiosity. I found myself answering questions on many threads and was getting lost. Thus i created DrSclafani answers some questions where patients and their caregivers could share concerns and questions and hopefully find some answers.

NHE

This site does not offer medical advice. All treatment decisions should always be made with the full consent of your physician.

i am in full agreement with this quote. One should not take anything stated on this website as fact, but as opinion. One should always seek personal medical advice as part of a consultation with a physician.

My intent here is to provide my opinions and understandings of a very complex issue. My goal is to educate patients, caregivers and health care providers. I do not intend to solicit patients by doing this.

[Cece]

Also, you clearly have the most experience performing the ango on pwCCSVI since you've done 150 of the 600 procedures within AAC.

I think Dr. Sullivan in Atlanta and Dr. Ponec out in California have the lion's share of the other 450 out of 600. Can't remember the names of the other doctors with Dr. Ponec.

[drsclafani]

Lyon, when you disrespect Dr. Sclafani, I take it personally, very personally, and I sent PMs to both moderators asking for your post to be removed and for your banishment from TIMS.

Asher, when you disrespect Dr. Sclafani, I take it personally, very personally, and I sent PMs to both moderators asking for your posts to be removed.

hp

thanks very much for the support....but lets not respond in kind.

asher had a valid question, perhaps not phrased to our liking but let it be, let it be.

[drsclafani]

Asher/Lyon,

No one here is demanding you to take the advice or benefit from the education that Dr. Sclafani is providing on this thread. If you find it offensive or "illegal" in any way just stay away.

Clearly, with over 500,000 views, this thread is helping people out there. People who cannot get this kind of education or assistance from their own doctors and most definitely people who do not want to wade through your nonsense to get some good information.

Dr. Sclafani does not need to do this but he does and certainly does not deserve to vilified for his efforts.

thanks very much for the support....but lets not respond in kind.

asher had a valid question, perhaps not phrased to our liking but let it be. As long as its a question and not a taunt, i will answer it.

[Cece]

Is there a name for this theory? LVS, leaky vein syndrome?

Ever since Dr. Sclafani used the term 'diapedesis' (meaning leaky veins), I liked it because it sounds more scientific. It could be the Diapedesis in CCSVI in MS theory. Longish and clumsy but accurate.

I am still exploring this idea of imaging the dural sinuses as they are what leads into the jugular veins. i do have trepidation about it but have made some important discoveries. I will be discussing one on this wee'ks case of the week which should be posted tomorrow.

Of course I am very curious about what you are finding....

You have your neurologist hammer, but what do we send to the budding neurointerventionalist? ;)

If a patient did not want you imaging their sinuses this way, would you perform the procedure without going into their sinuses?

Would it be safer to do this if a patient were sedated, so they wouldn't move? Do the neurointerventionalists sedate their patients before working in the sinuses?

[hwebb]

I'm very interested to read anything written on "leaky veins". Myself, I know my veins have never been as robust after the onset of MS symptoms (even after angioplasty improved the flow).

Since getting MS symptoms, I have had to be very careful of what I eat as many things I used to eat now stir my veins up (I thought possibly I had "leaky gut" syndrome...there a lot of papers written linking leaky gut with neurological problems). A cup of peppermint tea makes veins throughout my head feel uncomfortably tight.

And since the onset of MS symptoms, any minor infection causes my veins to feel "raw", and I can feel my jugulars pulsate. Is the infective agent attacking the endothelial lining of my veins? Is it attacking the valves? What's going on?

Helen

[Cece]

*sigh* If Dr. Sclafani is treating three patients all day long today, I bet we're not getting the teaching example just yet.

Hwebb, here's a quote from Dr. Sclafani's Endovascular Today article:

Zamboni proposes that CCSVI has a role in the pathogenesis of MS. He suggests that resistance to cerebrospinal venous outflow causes vicarious redistribution through small collateral veins that cannot handle high flow.10 He also suggests that tight endothelial junctions widen to allow diapedesis of red blood cells, T cells, and other immune cells into the brain, resulting in inflammation and hemosiderosis that is reminiscent of what is seen with venous insufficiency of the lower extremities. This is supported by iron deposition as seen on susceptibility-weighted magnetic resonance imaging (SW-MRI), which reveals that the inflammatory MS plaques always surround a central venous structure. MRI shows that the central vein and surrounding plaque have abnormal quantities of iron. Pathologically, the basement membranes of these deep veins are thickened, and hemosiderin deposits are present in the wall of and adjacent to the deep cortical veins. T cells and macrophages violating the blood-brain barrier provide a working explanation for the autoimmune cascade that result in demyelination and the neurological manifestations associated with MS.

www.thisisms.com/ftopicp-129679.html#129679
www.thisisms.com/ftopicp-106901.html#106901
I would think Dr. Zamboni's "The Big Idea" paper and Joan's notes on Facebook would be good resources too. There was recently a discussion about gluten leading to leaky veins.

[drsclafani]

Also, you clearly have the most experience performing the ango on pwCCSVI since you've done 150 of the 600 procedures within AAC.

I think Dr. Sullivan in Atlanta and Dr. Ponec out in California have the lion's share of the other 450 out of 600. Can't remember the names of the other doctors with Dr. Ponec.

I dont know the breakdown, but i do communicate with these guys. I am not sure who has done the most procedures but we all have good experience now.

Drs Sullivan and Ponec have joined me in an executive council of AAC for CCSVI. We have begun to create structure to that title, such as quality assurance, risk analysis and complication review. Drs Sullivan and Ponec will be present at my NY Symposium.