Post-procedure inquiry of Dr. Sclafani's patients

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

Postby concerned » Sat Jun 05, 2010 9:40 am

Did Dr. Zamboni say that? I can't find anything about the life saving potential of "Liberation".
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Post-procedure inquiry of Dr. Sclafani's patients

Postby Bluejeans » Sat Jun 05, 2010 9:52 am

Thank you, Lora. You said it much better than I. Guess I just cut to the chase and aroused suspicion. By the way, I am on Dr. Sclafani's list. I assume that does not automatically mean I will be a patient. I have other issues that could exclude me. I don't count my chickens....

I originally posed the question because so much helpful information has been posted on TIMS by Dr. Dake's patients about their results. That openness has been encouraging. It has told me much that I wanted to know without any posts by Dr. Dake himself.

Dr. Sclafani has created a strong presence on TIMS with frequent posts and has many loyal followers as a result. His patients, however, have been mum.
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Postby bestadmom » Sat Jun 05, 2010 10:46 am

HiBluejeans,

I'll answer your questions but I am not a good example.

First off, several of Dr. S's patients formed the CCSVI Alliance. We've been very careful about our posts because we need to be professional and getting into the emotional fray is not where we belong.

Dr. S posted about me, but not by name because of privacy laws. I found him, and I was his first patient. I knew going into it that I made myself a guinea pig, in hopes of helping myself. Dr. S decided against stents from the get go because the migrating stent of Dr. Dake's patient was the day before our first meeting and the risk was more than he was willing to take.

My right jugular had a pocket or septum and when ballooned, it threw a clot which was treated immediately. By the next day my jug was completely clotted closed. Dr. S didn't see any stenosis in my left jug or azygos, but he's learned better ways to image them as he did more cases and knows he probably missed something.

I had 2 more interventions within 3 days that didn't work. Dr. Haacke tried to connect Dr. S w/Zamboni for advice, but the Italians were on vacation. I went home w/a script for 3 months of coumadin, which made me so weak I fell a few times and landed up in the emergency room to be sure I had no internal bleeding.

I was scheduled to do it again April 14. Dr. S got shut down on April 5. So here I am, waiting like everyone else. Since I'm off the coumadin, I am stronger. I am fairly stable, but I'm SP and in a chair and can't move my legs at all. I have no cognitive or fatigue issues. I trust him with my life.

Feel free to pm me if you have more question, but this is the "truth, the whole truth, and nothing but the truth!"
Last edited by bestadmom on Tue Jun 08, 2010 8:18 pm, edited 1 time in total.
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Re: Post-procedure inquiry of Dr. Sclafani's patients

Postby Cece » Sat Jun 05, 2010 11:49 am

I linked to two blog reports from Dr.S's patients, were those not useful? I've never considered Wheelchair Kamikaze to be mum, but ok... :?

Give me a couple weeks or months, I'll post my report, once it comes to be! :)
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Postby blossom » Sun Jun 06, 2010 12:29 am

i agree with 1eye, the liberation treatment so far seems to at least if nothing else has been stopping the progression. there have been lots of great improvements too. it is a form of murder to not at least let people try this if they want. i'm sure a friend of mine with ms that passed away because one day he woke up and his lungs just would not work. i'm sure that if he could have gotten the liberation treatment a week or so before and the progression was stopped it would have been a much better outcome than the ms progressing to that point which did cause his death.
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Postby concerned » Sun Jun 06, 2010 11:00 am

It's premature to say that. Is there a study that mentions this life saving potential? Did she die because her Jugular had stenosis? Murder is a big word and if you're serious you should call the police. An autopsy might be able to confirm that it was a stenosis or occlusion of the jugular. If you have proof that a doctor who knew how to do the "Liberation" procedure refused to give it to her, or refused to allow her to get it done from somebody else, and that's why she died, well that terrible. Otherwise it's just libel.
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Postby Cece » Sun Jun 06, 2010 11:18 am

blossom, I think this should be available as compassionate care to people without better options...but maybe it is too soon, maybe one more year's research and we'll be there? Maybe two years? I feel like I can rail against how long this takes all I want and it never gets any quicker; it's just the speed of research & science. :(
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Postby concerned » Sun Jun 06, 2010 12:14 pm

................
Last edited by concerned on Sun Jun 06, 2010 7:07 pm, edited 1 time in total.
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Postby mshusband » Sun Jun 06, 2010 12:21 pm

So you're against any thought positive about CCSVI realistic or medically reasonable?

But your mom should be at the top of the list without paying anything for it?

I understand now ... :roll:
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Postby 1eye » Sun Jun 06, 2010 12:51 pm

What I rail against is every GP in the US and Canada not knowing about this procedure, and being held back from referring their patients to someone who can diagnose and treat in one hour.

The people on this forum have been the exceptions, and Radek is obviously an outlier. A majority of us, I trust, would not be caught dead jumping up and down on YouTube. The vast majority of 'MS' patients will benefit from Liberation. It is not unproven. What stopped Dr. Sclafani had nothing to do with science. It is something else disguised as medicine, which is still an art, not a science. The reason for that is why 'scientists' posting here are arguing degree of the murder and saying I am unscientific.
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Postby Cece » Sun Jun 06, 2010 1:03 pm

1eye wrote:What I rail against is every GP in the US and Canada not knowing about this procedure, and being held back from referring their patients to someone who can diagnose and treat in one hour.

Yes...this is what I want too. But how do we get from here to there?

I think Canada might be closer to the goal, with the legislature subcommittee being involved and the degree of popular uproar over CCSVI. The US has more scattered opportunities to be in trials. But most doctors base their decisions on their medical training and on what's published in journals...where Zamboni's research has been published...but the rest of our guys have to get more out there!!
1eye wrote:The vast majority of 'MS' patients will benefit from Liberation. It is not unproven.

On the contrary...it needs to be duplicated...right now it's just Dr. Zamboni's results standing alone.
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Postby concerned » Sun Jun 06, 2010 2:37 pm

...
Last edited by concerned on Sun Jun 06, 2010 7:06 pm, edited 1 time in total.
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Postby 1eye » Sun Jun 06, 2010 3:48 pm

The treatment of all that want it may not be in OHIP's power to grant. If 80,000 Canadians had $1500 worth of procedure that would be $120M. More than ten times the amount the 'MS' Society wants for CCSVI research. It may be hard to prise that size of chunk off of Canada, Ontario, or any smaller jurisdiction. If one doesn't want to wait for that, paying one's own way may be the only option (except for humanitarian procedures, done where the individual has no income or reasonable expectation of one).

But that does not mean OHIP, or any group of doctors or hospitals should be unaware of it. It should be the standard first-line treatment for CCSVI, and GPs should know who can fix it. I would be very surprised if a seasoned GP did not already know the right surgeons.

If it is too expensive, I am all for private insurance, private medicine, two tiers, etc. When real treatments for cancer come along, as with any patentable thing, they will not be cheap, regardless if private or public. I hope we learn something from all this.
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Postby concerned » Sun Jun 06, 2010 4:00 pm

Well my mother and I have no money to pay on our own. I'm sure I could raise $1500, where is charging that?

But doesn't it seem to you that in clinical studies, the patients shouldn't pay anything? Because it's an experiment I mean?

I thought these were all positive and open minded things I was saying and then MSHusband implied my mother shouldn't get "Liberation" because I haven't thought enough happy thoughts or something. We're not in never never land here.
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Postby mshusband » Sun Jun 06, 2010 4:07 pm

I didn't imply that at all ... I just don't get how you think your mom should be "first in line" ...

That logic makes all the sense in the world. (sarcasm)

You don't believe in CCSVI, but you want your mom to have it. Why? "just in case it's right"? OR "because deep down you know it's right"? OR "to prove to her it's not right and crush her hopes"?


But this is my last reply to this conversation. All I was saying is what makes your mom more special than anyone else? Even ahead of the people who are out there fighting to get this treatment brought to wherever you're from ...

In fact, I would argue just the opposite ... since you don't believe that someone was murdered by not receiving CCSVI (you said that in another post) ...

Your mom's higher EDSS should actually go last - since CCSVI has been shown to help those with LOW EDSS the most ... WHY NOT HELP THOSE WHO WILL LIKELY BENEFIT THE MOST FIRST? CONSIDERING HELPING THEM LATER WOULD PROBABLY ALLOW THEIR EDSS TO ADVANCE TOO THUS MAKING IT LESS EFFECTIVE FOR THEM POTENTIALLY?

I'm just saying ... you can't have it both ways concerned ... because your mom directly impacts you you can't change your "logic" you've used in other arguments just because it's convenient.

Like I said ... I'm done. You're not worth my time.

You shouldn't argue on here against CCSVI ... you should ask questions and try to learn. You do neither ... it just seems you're a contrarian. You bring no logic to your arguments either ... you just use Sal Alinsky tactics ... unless it behooves you for it to be another way ... then you state "well my mom should be first in line and she shouldn't pay".

Like I said ... makes ALL the sense in the world ... you're certainly right, but it seems you're the one in never never land ... not I.
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