For anyone scheduled with Dr. Sclafani...

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

Postby jr5646 » Tue Apr 06, 2010 5:32 am

Thank You Dr. Sclafani... I can only hope and pray this is just slight bump in the road. I was also on Dr. Dake's waiting list and the thought of having the door closed in my face twice was/is unsettling to say the least.

I've been to two vascular Dr's locally who were "ccsvi" clueless and looked at me as though I had a third eye while simply trying to convince them to test me. So the last 6-7 months have been a difficult roller coster ride for me to say the least..

Attorney's getting involved in anything is the most distressful thought, but I realize they are a necessairy evil.

I'm just running out of energy I suppose (doesn't take much these days). It is just a shame that folks have to travel out of the country to be treated when we have such talent here.. It must be that "fear" of the slightest complication and being sued that is mudding the waters. Frustrating for sure!!!!

Anyway, I really appreciate all your efforts - and keeping us notified.. Thank you again.
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Postby MaggieMae » Tue Apr 06, 2010 5:44 am

When you say there were six who were cancelled at Stanford, I'm sure you mean six who already had their appointments scheduled. My husband was also on the list for Stanford, talked to Dr. Dake and others there, but never even got to the point where we had an appointment date. I would guess there were hundreds on the Stanford list too. We are also on the list for Dr. Sclafani. I want to stay hopeful, but right now, I'm not.
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Postby KikiT » Tue Apr 06, 2010 6:24 am

I was scheduled for next week...was looking foward to maybe a little something for my sons wedding...even feet that don't match my blue dress!

It seemed to be so painful for Holly to relay the news.
We will get our chance...have faith.
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Postby ozarkcanoer » Tue Apr 06, 2010 6:27 am

Why should the Wall Street Journal delay patient care !!! 8O

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Postby matchoo » Tue Apr 06, 2010 6:40 am

ozarkcanoer wrote:Why should the Wall Street Journal delay patient care !!! 8O

ozarkcanoer


Amen brother!! They are tied to the pharnacreutical industry. This is the fight of all fights. The country again is am oligarchy and if this doesnt prove it them what must I do. Whatch food inc and see the kind of people you are up against. MS is Billions upon billions yearly at stake. They the corrupt will smash this. Food inc on netflix.
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Postby Rokkit » Tue Apr 06, 2010 6:48 am

Dr. Sclafani isn't even stenting, just balloons, good grief.
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Postby girlgeek33 » Tue Apr 06, 2010 7:56 am

So absolutely crazy! Especially since in the numbers there haven't been ANY major issues from the angioplasty treatments!!!!!!
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CCSVI and Dr. S.

Postby belsadie » Tue Apr 06, 2010 9:07 am

I received an e-mail from Holly on April 4 in my response to a request for an approximate treatment date and she returned stating that my wait would be "about a year" since the list has gotten long .
Oh well...better late than never, I guess....????!!!!


HANG IN THERE, D. S WE'RE WITH YOU :roll: [/b]
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Postby mshusband » Tue Apr 06, 2010 9:49 am

larmo wrote:. .



Larmo ... what is MB???
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Postby larmo » Tue Apr 06, 2010 9:54 am

mshusband wrote:
larmo wrote:. .



Larmo ... what is MB???


The initials of the person who informed me. I was asked to delete the post so Dr. S doesn't catch any crap. No delete option so this is what you get !
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Postby mshusband » Tue Apr 06, 2010 9:55 am

Yeah ... I figured it out after thinking about the initials ...

Good to know.

I saw you edited it after I tried to quote.

NO PROBLEM.

Thanks friend.
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Postby bluesky63 » Tue Apr 06, 2010 2:07 pm

So are they going to stop doing any sort of vascular treatments on MS patients too -- in the heart, in the liver, anywhere? Just in case? You know, other people have said it, but this definitely feels like medical discrimination. I feel like I better not tell anyone I have MS anymore. Expunge it from my record. Not to be melodramatic, but god help us if we have a problem and a surgeon's hands are tied because someone remembers something they read about bad outcomes and MS.
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Postby larmo » Tue Apr 06, 2010 2:49 pm

I feel as you do bluesky63. In Canada they decided if doctors know you have MS, they can't even test you for CCSVI. They seem to be taking this 'wait and see' approach. MS patients can't even pay to see if they have CCSVI. The wimps are dragging their feet.

I like the analogy; what if your house was on fire. Would you rather try to put it out or would you wait for the fire trucks and see what happens when you wait !!!!

It seems to be mostly one of 3 things. 1. Ignorance 2. Stupidity or 3. Naivety
Ignorance is easy to fix, it just means you've never had the opportunity to learn. People should not be offended by being known as ignorant. Everybody is ignorant about something. I don't know how to pilot the space shuttle, I'm ignorant about that subject.
Now if I was taught how to do it and I just can't understand (get it), yea, I'm probably stupid. If I was taught how but rejected it, that would make me naive.

So when you think about it, by calling someone stupid, you're actually doing them a favor. Otherwise they might go thru life not knowing something, your giving them the opportunity to change :)
Let me be the first to do the foot-draggers a favor, YOUR STUPID :)
Notice how I was nice by not calling them ignorant (even though that's what I meant).
It's the naive ones we really need to worry about. There are a few in that category. I'd like to tell them that to their face ! Sure, we would debate and argue, and I would win.
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bump in the road

Postby THEGREEKFROMTHED » Tue Apr 06, 2010 3:14 pm

curious...do they halt the CRAB's when one has complications? Believe me they are dealing with one tough italiano!
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Postby mshusband » Tue Apr 06, 2010 3:50 pm

NO and I think that's the part frustrating everyone.

They still sell Tysabri and look at all the deaths.

One accident with CCSVI (a procedure/practice Dr. Sclafani isn't even using) at another facility and they stop everything.

I find it odd that Dr. Mehta in Albany is going to do the exact same things Sclafani was doing ... so I tend to believe Dr. Sclafani will be back in business soon ... but still death with Tysabri is a risk and NEUROS PUSH IT ON PEOPLE ...

Craziness ...
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