This Is MS Multiple Sclerosis Knowledge & Support Community

HappyPoet wrote:Good news, perhaps?

cheerleader posted this about an hour ago on her Facebook page:

cheerleader wrote:Dr. Sclafani will find a private location to treat and he will continue. There will be more information in the coming days.

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Should we perhaps see where this is going before we proceed with setting up a donation system? Maybe the way to proceed is via a percentage built into the fee. In this way some of that cost burden may fall onto insurance for those with ins. For those of us w/o ins.... then it is still a user pay whether it be the fee (whatever that may be) or fee + a percentage to offset some clinic costs?? Just a thought....

Dear Dr Sclafani,

My doctor who will be doing my phlebography (and if shown CCSVI then balloon angiplasty) , she will be pewrforming the procedure this Friday.


In our consultation she said only 50% of the numerous MS patients she has liberated with balloons, have seen symptom improvement.
The other 50% that she liberates with balloon angio , have No changes!

Now this is worrying me as i am due to have the plebography on Friday and treatment if necessary. But i dont want to go through all of this to have No changes.


Do you have any form of liberation balloon angio protocol i could show her? as she has not been trained by dr zamboni but is a vascular surgeon.

What percentage of your patients that are liberated with balloon angio, see symptom improvement?

Any help would be appreciated Doctor

Thank you

Adam

adamt wrote:Dear Dr Sclafani,


Now this is worrying me as i am due to have the plebography on Friday and treatment if necessary. But i dont want to go through all of this to have No changes.

Thank you

Adam

It is such an easy procedure. Do you feel an easy procedure is worth a 50/50 chance of feeling improvement? I don't know what the true percentages are with how many experience improvements vs. not. I just know the procedure was so easy and I love the improvements I have received!!!!

mshusband wrote:That's also why we don't see the likes of a few people on here post over there ... because they can't hide behind screen names and fake user IDs ...

not that I'd accuse anyone here of doing that. But I'd love to see who the anti-CCSVIers on here really are in person ... on Facebook.

Don't you have anything better to do than think about us? This thread is for questions for Dr. S and I don't see what your penchants have to do with it.

I don't use Facebook because I think it's silly.

I need an email address to send my money to. I suggest we get John Robinson sorted before anything else. So is it you, Dr.S, or somebody you trust?

I have seen Holly referred to but I too am sure she doesn't want her email bombarded.

This is why need an email to send money to. CCSVI Alliance seems right and it is to be hoped trustworthy. All we need from them is what we have from Cece and an address for the fund to use instead of Holly's (unless she volunteers.) I propose someone (not me) go through and add up pledges and keep the Alliance honest. There will soon be real $ so it'll need a bank account.

one warning about Facebook--

Facebook sent me an email, wanting me to join--I had never been to facebook, and didn't intend to. But one of the professionals (!) I see had sent me an email to go look at his site at Facebook, so facebook had my email only indirectly--AND when they contacted me, THEY ENTERED MY EMAIL CONTACTS, AND POSTED ALL OF MY CONTACTS THAT WERE ALSO ON FACEBOOK, assuming (very incorrectly) that this would persuade me to join facebook--
SO Facebook violates privacy not only on their own site, but I assume from my experience, all over the internet.
I assume this is illegal, but have no idea how to deal with it. If you say go to FCC, I'll only laugh--they are as corrupt as Facebook.

Isn't this thread supposed to be:

"DrSclafani answers some questions"

Let's not make our best friend read through all this to get to real questions.

Jim

I am so very sorry to hear this news Dr Sclafani


Please know that many (including those like me who don’t post a lot but still visit TIMS regularly) really appreciate more than words can express the time, energy and effort you have put in CCSVI. I will never forget it. As you can see, a large number of people are willing to do what they can to help you out depending on what you decide to do next.

Again, I am so sorry

And...a heartfelt thank you for all you have done so far!




Note: I know this is supposed to be "Dr Sclafani answers some questions" but I am making an exception just this once

flipflopper wrote:Note: I know this is supposed to be "Dr Sclafani answers some questions" but I am making an exception just this once

I do not think he is in the mood right now to answer questions, I would cringe if I saw this thread fill up with hardballs right now!

You are right Cece. I would not be interested in answering questions either at the moment if I was in his shoes.

I think it is pointless to try to figure where to send money at this point--
would't it be best to wait and see what Dr Sclafani himself decides to do?

By now, he is well aware of the outpouring of generosity, and if he needs to, he knows he can factor that into his decison making.

this is really outragous.....they will not allow you to start back up again because you are properly trained, the same reason they stopped the doctor in ontario doing the correct procedure. but that is why they only look at the sites that are not trained to look for blockages. they should be closing down those sites for incorrect practices and leave those ones that are properly trained by Dr. Z alone. But they aren't looking for the truth

shye wrote:I think it is pointless to try to figure where to send money at this point--
would't it be best to wait and see what Dr Sclafani himself decides to do?

By now, he is well aware of the outpouring of generosity, and if he needs to, he knows he can factor that into his decison making.

I agree...

shye wrote:I think it is pointless to try to figure where to send money at this point--
would't it be best to wait and see what Dr Sclafani himself decides to do?

By now, he is well aware of the outpouring of generosity, and if he needs to, he knows he can factor that into his decison making.

Ditto.

Dr.S.

Heartbreaking news but thank you for all the hours, days, weeks that you have given to us.

We are with you 100 percent and will find a way somehow.

Drury