DrSclafani answers some questions

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

Postby walcat » Tue Jun 22, 2010 9:48 pm

Dr. Sclafani, My heart just sank when I read what happened. You have done so much for CCSVI and MS’rs. I too am willing to donate, along with all my family & friends. Keep your chin up, we will overcome all the naysayers. :D
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Postby msscooter » Tue Jun 22, 2010 9:59 pm

Dr S. please consider fighting the IRB. If you win it opens things up more. The arguments against you are opinion the arguments for you are anatomical facts. We need you to open a clinic and treat patients but we need you to help us battle this war of ideas too. The risk of going off the grid without winning them over is that you get marginalized, they feel free dismissing you. We have the truth on our side, and so many universities and hospitals around the world are dealing with this "violent revolution of ideas". We will help you. All for one and one for all!
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Postby Rose2 » Tue Jun 22, 2010 10:13 pm

As my husband has reminded me,
'It's for the Children".
yes, CCSVI IS for the children, be they 2 or 20 or 65, MS affects the entire family.
It seems like many issues are passed or promoted on It's for the Children base that we must remember that MS is not affecting only the MSer.
My children are now adults, and their lives are changed now that I am Liberated. One is always a child and one is always a mother or father.
MS just fucks it up.
This catastrophe must be repairable and I want to help.
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Postby hopeful2 » Tue Jun 22, 2010 10:17 pm

Dr. Sclafani: When I read your post about the IRB's rejection of the proposal I was absolutely speechless. Then I read through the rest of today's posts and felt better hearing some good suggestions for you.

If you decide to keep treating CCSVI patients I'd like to help. I'll contribute $1000. You gave me hope when I had so little, and showed me how a doctor can be at the top of his field, able to think outside the box, and still be empathetic with patients! Thank you for being you :)

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Time to Involve Michelle Obama?

Postby drbart » Tue Jun 22, 2010 11:02 pm

While I have no illusions about the current administration being immune from the influence of money, I think the First Lady would have a lot of traction with public opinion and the press if she got involved.

MS killed her father, and if Hauser et al hadn't squashed Schelling's findings in the 1980s, or Putnam hadn't been ignored in 1935, one or two generations of people might have been free of MS.

This whole thing, especially in the US, has the stink of moneyed corruption. Why has the US press been so *utterly* silent?
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dr sclafani study

Postby BCSailor » Wed Jun 23, 2010 12:11 am

could someone please point me to what dr sclafani's proposed study was?
Was this ever posted anywhere?
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Postby sbr487 » Wed Jun 23, 2010 1:42 am

Hey, Doc.

You are pretty much aware the havoc MS brings in our lives. Did we ever quit? Quiting is not in our blood (whatever little we are left with ... :lol: )

You have our support in what ever you do (including a long break :) ).
At the end of the day, what matters is your effort in this direction ...
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Postby L » Wed Jun 23, 2010 3:26 am

I'll donate, I'll try to fund raise.

I'm all into the DIY ethic, what a great idea.

Quite a task though..
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Postby soapdiva884 » Wed Jun 23, 2010 6:22 am

I would like to add Dr. Sclafani, while all of your feelings are valid. WE NEED YOU more now than ever!!! Please keep your head up, your heart open and your eye on the prize.

I would also like to add that John, our bus. acquantices, our community and our families have raised many many thousands of dollars for MS. We have done bbq's and spaghetti dinners to do so. We also send letters each year out and we have been VERY successful at this.

SO, you see even us small people can raise alot of money for the greater good. We are willing to do whatever it takes to help you get on track. Just say the word Dr. Sclafani.

Sincerely, Billie and John in Upstate NY
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Postby magoo » Wed Jun 23, 2010 6:58 am

Dr. Sclafani,

I am sorry about this rejection. I am sorry it has upset you and those of us living with MS/CCSVI. Your passion has inspired us to fight. As you can see we are not finished. Let us support you and great things can happen I believe.

Rose mentioned doing this for our children. I couldn't agree more. When I went for treatment one of my biggest goals was to get better for my boys. They have dealt with so much in their young lives watching their mother deteriorate in front of them. Now they get to shake off that worry and enjoy the pleasures of a mother who can tickle, chase, run, play, think, etc., etc. This has done as much for them as it has for me. I also fear that their veins could be compromised and if we don't get past all of this they could develop MS too. I NEVER want my kids to suffer in this way.

Which ever way you choose to deal with this, we will be behind you.
Thank you.
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby msgator » Wed Jun 23, 2010 7:07 am

count me in for the $1000, and I bet I can get another from my brother, from my parents and other amounts from other family members and friends.

always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby 1eye » Wed Jun 23, 2010 7:12 am

Sounds to me as if Dr. Zivadinov should have a cohort of people with CCSVI/'MS' who are NOT on the DMDs if he wants to prove anything about DMDs. If he doesn't, he certainly cannot be trying to show that they are irrelevant to CCSVI/CVI. It sounds like he is trying at least to make sure they stay relevant to 'MS'.

If he does not test CCSVI treatment against a cohort who are not on DMDs, then his results are irretrievably linked to DMDs. It doesn't prove CCSVI treatment is efficacious, it proves only that the combination of CCSVI treatment and DMDs is. That is a win for DMDs, isn't it? It makes no scientific sense. Just good business sense.

There is only one solution. LIE. If we want CCSVI to be tested without reference to any other treatment, we must all say we are on DMDs, since that is what they want to hear. In fact whatever it is they want to hear, that should be a mantra. We can use the Internet to find out what that is. If you find out about a clinical trial, have a knowledgeable friend who does NOT have MS get in touch, and apply, and find out what they want to hear. Then you can apply, armed with this knowledge. The next thing, they will insist on knowing who your neurologist is. Have your knowldgeable friend find out. NEVER tell them. If they insist on knowing, give your friend's phone number, and have them pose as your neurologist's receptionist (they never take calls themselves, anyway).

This may sound underhanded. Is it more underhanded than stringing a few hundred people along, who may be near death, allowing them to languish on a waiting list, without any intention of helping them? A certain woman from Barrie was on Dr Sclafani's waiting list. She was cancelled, then she got worse, the she went into hospital. She was put on a feeding tube.

Today, thanks to a letter campaign, she was airlifted out of the country to be treated. That's what communication does. Some people think it's the Internet. I think it's people.

All's fair in love and war.

I am not a doctor. I do not give medical advice. These days, there are some doctors I am GLAD I am not. Dr. Sclafani, I would give anything to be more like you. There seems to be an odour among SOME of these doctors.
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Postby TurfMan » Wed Jun 23, 2010 8:49 am

When one attempts to summits Everest you don’t simply grab a rope and off you go. Although this attempt has failed let’s not simply role over and fade into the shadows. Anything worth fighting for will have its setbacks; the road we have all traveled should be proof of that. We were all Dxed with MS yet hear we are at the front lines of the battle, and a battle it is. You are not supporting the troops, you are the troops, and I think I hear an optimistic tone in the ranks which is the only way to achieve a worthy goal. We got punched in the face and if they think that is the end of the fight they have another thing coming. Chuck Norris asked if he could help, but I had to tell him He might not be tough enough for this group. I would rather stand with you all and Dr. S!!!!!
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Re: dr sclafani study

Postby Cece » Wed Jun 23, 2010 8:51 am

BCSailor wrote:could someone please point me to what dr sclafani's proposed study was?
Was this ever posted anywhere?

here's what I dug up:
drsclafani wrote:my study is a safety study and calls for ME to do each study. I will have assistants but i will be the primary operator of each case. After 200 cases, we should be able to triple the rate of procedures. I would like to perform 10 per week, but need additional neurologists to do intake to get to that level.

drsclafani wrote:pam
we are going to do an open label safety study, not a randomized prospective blinded treatment trial. A randomized trial will require funding and a multicenter organization that is not in place now.

drsclafani wrote:we could study this. but First safety. no one has corroberated zamboni yet. We hear lots of anecdotes about recurrents after encouraging early outcomes. We need to clarify this before we can compare drug therapies.

why argue with it. by proving safety we clarify techniques safety and complications and patients get treated.

we are not ready for randomization.

lets get several 200-300 patient studies completed and we will have learned a lot. that will allow many patients to be treated while proving safety and efficacy.

then we can move toward stent versus no stent, venoplasty plus ms therapy vs venoplasty without drug therapy, etc. you get my idea. in the mean time we can treat a couple of thousand patients while we assure to the medical community that no one has been treated dangerously

I will donate too.

Dr. Sclafani, it is a kindness to us to allow us to 'be here for you'...if you're depressed, you can come on back, we're depressed too. :)

Could the solution be to work within the hospital and put a different proposal forward to the irb once again? Still hard to believe it went from the admin saying this did not even need irb oversight to irb rejection. Is the solution to put an irb proposal in at SUNY instead of King's County? I tried to breakdown what the irb rejection points were, to see what they would approve...would they approve if you were doing a randomized trial? But ethically you don't want to? And you'd need funding?

You'd said awhile back that you had an offer to join such a creature but an objection was that some of the doctors lacked experience...this was also your criticism of the BNAC study...and that after forty years of experience and twenty patients, that was when you could even begin to feel confident in treating ccsvi. What should a randomized trial require of its doctors' experience before they begin the trial?
"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 1eye » Wed Jun 23, 2010 9:07 am

Chuck Norris:.. reminds me, high profile supporters always help. Anybody know how to get a message to Bill Gates? I think he might've once been on the Indigo Girls mailing list but maybe not.

"On the Internet, no-one knows you're a dog."

I pledge another $1000. I may have to wait another month or so. Fixed income, and all.

Keep the telethon going!
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