This Is MS Multiple Sclerosis Knowledge & Support Community

Doctor;

Considering that each day is lost (assuming the relation CCSVI <=> MS) it is just common sense to have the catheter veno / and / fix now... If further progress are made; further analysis and technical will be deployed / developed / invented and this procedure is not (that is subjective opinion) risky. therefore we could be "updated" after this first intervention?

Thank you for your time,



(Sorry being such a pain)

Cece quoted

The results suggest that in MS the T4/T3 conversion might be reduced as seen in acute or chronic diseases

from "Thyroid function in multiple sclerosis"

Have had low thyroid for years--concurrrent with all the MS symptoms-- showed same as in this study--very low T3 in relation to T4--
But did also have chronic severe liver problems.

Thyroid extract gets bloods to correct levels, but still some of the symptoms were not relieved until started with Inclined Bed Therapy.

Understandable outrage at NMS society, but I think there are other threads for that. This thread is already 160 pgs, so lets lkeep it on topic. (This from one of the worst at that, I admit. )

Dr S, I only just started reading your Forum after listening to your Presentation in Italy. I've been reading daily topics on TiMS and have learned a lot about the disease and especially CCSVI from this site, but I've never had a question to ask. Having just gone through pretty much all of this Forum in the last couple of days, I suppose my only question would be - Are you the only Doctor on here ?? -- because some of the info and detail talked about here makes me glad I didn't have a dumb question to ask !!!!!!!
Anyway I still don't really have a question but only a thought that I'd like to share with you. I am involved in M.S. purely as an "in-law", my Wife is the MS'er: now if she wanted to get laser surgery on her eyes, or if she wanted a face-lift, if she wanted larger breasts or butt cheeks, or if she wanted to get rid of some belly fat (NONE OF WHICH SHE NEEDS TO DO I.M.H.O. !!!), she could do it. If however she wants to get badly collapsed / blocked / tangled veins in her neck fixed, well too bad, she can't because of some inane requirement that it be a proven and tested procedure. So for vanity, go ahead, for the sake of your quality of life, tough luck !!!!!
From reading this Forum, you have many, many people who need your assistance, my Wife being one of them, you appear a dedicated gentleman who wants to help the MS Community but are being denied the opportunity to do so by the "establishment" who have come up with some ludicrous excuses to put down your application for approval to do this work.
Might I suggest that you tell the "establishment" to go screw themselves, and set up your own "shop" to do this work - call it Sclafani Plumbing or (to be serious) The Sclafani Institute; I'm not even suggesting you want wealth, but have you ever thought how much you could bring in through something like this - say only half of one percent of North American MS sufferers came through your Clinic in a year, and lets say you (being charitable) charged $5.000 for imaging and treatment, you would be doing sales of nearly $12 MILLION. That would allow you to expand to treat more people bringing in more dollars to allow additional centers to be opened.
I know it has been suggested and I believe you even hinted that it was a possibility, but please REALLY CONSIDER IT, for the sake of all the Dr Sclafani Fan Club, for all the MS Sufferers in North America and from my perspective, most importantly for my Wife . Thanks Doctor.

welshman wrote: because some of the info and detail talked about here makes me glad I didn't have a dumb question to ask !!!!!!!

Back on June 14th:

drsclafani wrote:

Kirtap wrote:Hi,
Maybe a stupid question, but i will ask...

the only stupid question is one that one is doesnt ask.

Welcome to the thread, welshman.

Any comment on the class action suit against Dr. Hubbard?
http://ccsvi-ms.ning.com/profiles/blogs ... tle-begins

And... congrats on the 200,000; we love you Dr. S!!
AH

annhow wrote:Any comment on the class action suit against Dr. Hubbard?
http://ccsvi-ms.ning.com/profiles/blogs ... tle-begins

"We’ve just learned today that a Los Angeles class action law firm has prepared an action against my dad. The claim will be “snake oil treatment duping vulnerable patients."....

(unrelated to above)
Some people pillory DrS, others have higher praise:

Prof. Salvatore Sclafani got shot down by criminals. Here is his iconic thread at TIMS - Learn as much as you can... http://fb.me/DmJskK3K

Some think his name is Steven & he lives in New Jersey:

In New Jersey, Steven Sclafani was told to cancel all appointments for MS patients, even though he was performing a balloon angioplasty that is commonly used to treat other congenital vein abnormalities, and was not using stents.

<shortened url>

And some translate him into and out of Danish with relatively little wear-and-tear:

"It's just enough that this is what happens. But if the blood can not get through the neck veins, it must be through the veins of the spine or the lower brain veins. 25 percent of the body's blood circulation is pumped into the brain and be out again every second throughout your life, and it is a very high burden on the smaller veins. The theory is that the load may be a factor in that you get sclerosis. It is not proven yet, but if there is less blood out, there will also be less blood in, and it means something to the blood flow in the brain, "says Sclafani.
Brain Spill
His basic position is like Zambonis that sclerosis patients in principle not to go out and have done a CCSVI operation at a private clinic.
"I saw anywhere that they could go to the nearest university hospital and be treated in an environment where doctors can develop an experience in operations, but it is not possible at present because there is too much opposition among neurologists over CCSVI. Seen in this light, I understand that some patients choose private clinics. They are afraid, and those are waiting the same as a waste of their brain. In my opinion, should neurologists be forced to do it here, "says Sclafani.

<shortened url>
That's all I've got.

I'm crushed about Dr. Sclafani being shot down. My friends know I was counting on that. So one asked me, "Why not go to a private clinic for this procedure?" Aside from telling her that I didn't feel that they were as well equipped to handle all the variables, I didn't know what to say." She thinks I should go for it.

Pros or cons, anyone?

LauraV
You need to start a new thread for a question like that--this is supposed to be a thread where we present questions to Dr Sclafani --

I thought I hit the "new topic" key. Sorry.

Hi Dr. Sclafani,

Hope you have a wonderful 4th of July weekend!

Hope you can stop by soon to say hello!!

Hope you find time for the 3Rs!!!

Hope you are very happy!!!!

HappyPoet wrote:Hope you find time for the 3Rs!!!

Research, research, and more research?


LauraV, I made the post right above yours, and in it DrS had said that he understood why people were choosing private clinics, since university hospitals aren't doing enough trials, and since time waited is brain wasted, or something to that affect, it is a translation from Danish. All you have to do is edit your question from 'pros or cons, anyone?' to 'what do you think, Dr. Sclafani' and you'd be set...

Hi Dr. Sclafani,

Have you seen this web page that shows the results of pre- and post-angioplasty fMRI brain scans on a single MS patient who was treated for CCSVI?

Here's the link:

http://www.hubbardfoundation.org/multip ... _fmri.html

Here's some text from the above webpage:

MS and fMRI

The Hubbard Foundation is researching the use of fMRI as it relates to CCSVI and MS.

The following graph illustrates preliminary data linking delayed blood flow in the jugular veins to delayed blood flow within the brain itself, pre and post angioplasty on a single subject. In comparing Pre to Post, notice how only half the blood comes into the brain, and it takes twice as long to leave.

Not exactly a question, I just thought you might want to see this in case you haven't already.

Mary Ann

Cece wrote:

PCakes wrote:The azygos vein has not been investigated because, according to the physician, the azygos can not suffer from stenosis if the jugulars are normal.

That is incorrect. the azygous can suffer from malformation in the presence of normal jugulars. however it is thought that two venous outflow obstructions are necessary in order to have problems

HappyPoet wrote:Hi Dr. Sclafani,

drsclafani wrote:it is quite interesting that 200,00 hit milestone passed with barely a peep.

Your first post was March 14
100,000 posts on May 13 = 9 weeks
200,000 posts on June 30 = 6 weeks = 3 weeks sooner!

When I had flipped my calendar, I noticed your star on July 21 (the nine-week mark), then I checked your current views which showed 199,996!! The 1/3 fewer weeks took me, and I'm sure everyone else, by surprise!

so lets look at some of the undeliverables to you

1. a test still has not been read
2. we are discussing an atlas
3. I did not get an IRB proposal accepted

1. Did we forget to tell you that we would much rather ask the questions and have you answer them?

ok ask away

. Will this be an Internet-based atlas and/or a print-based atlas?

I think a print based atlas would be useful . I am thinking of an atlast of the face of ccsvi. in Particular images of you patients for the doctors to identify with, followed by doppler, MRvenographic, catheter venographic images of ccsvi. That is why I have encouraged the kamikaze to join me. There are studies that show that if you add a patient's face to the digital folder of images of a diagnostic test, you get more detailed descriptions and better reports? It just goes to show that empathy goes a long way. The goals ofmy atlas include getting doctors to see you as human beings and not just patients

You can find your office and email inbox filled with CDs and images simply by posting a physical/PO Box address and an email address.

ok, here it is. send your images to

Salvatore ja sclafani md
Department of Radiology
Kings county hospital center
451 clarkson avenue
brooklyn new york 11203

remember to write your history, your treatment and anything else that is relevant. I will scrub all patient information from the images. if you want to be listed as a contributor, please let me know. if i use your images i will do so.

please do not send me any originals. Please do send me a letter stating that you give me permission to use the images in an atlas without obligation or expectations.

i will try to create a coffee table book that can be of interest not just to doctors.

all profits will go to funding ccsvi research

3. You can win approval with a second application--take as long as necessary to arrive at the right decision for you.

I'm raising my glass of grape juice to toast your previous 100,000 views, this 100,000 views, and your next 100,000 views, BUT the biggest celebration will come when you hit 1,000 of your smart, welcoming, caring, witty, thoughtful, expert, honest, polite, compassionate, and forgiving posts read by an audience of thousands! Wow!

In addition to helping us, you're busy saving organs and lives, teaching medical school, advising students, mentoring residents, overseeing your department, and so much more. I don't know how you do it all, but I am very grateful that you do find the time for us.

Thank you again, Dr. Sclafani, our Rock star.

~HP

thanks