This Is MS Multiple Sclerosis Community: Knowledge & Support

this might be helpful too, it's Dr. Sclafani translating Kleiner's doppler results, way back in 2010:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-3750.html#p140227

Thanks again Cece. Off the cuff, I know Dr Sclafani was ill, but is his clinic still doing the procedures? I read on the Albany website that the wait there was until January 2013. If I can have this done sooner obviously the better. Cost isn't a concern.


tilt

_________________
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger

lol. Nevermind. I found his FAQ and it states there is virtually no wait. Maybe off to the big apple next week. Yeehaw.

tilt

_________________
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger

Yipee!


Dr Sclafani can see me the week of April 23rd! To suggest that I am excited would be an understatement. Just getting all the docs together and everything finalised.

This could be a good birthday present indeed....


tilt

_________________
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger

Excellent news, tilt!
I think for people who are on the waitlist for Albany, cost is a concern. Albany was the easiest on the pocketbook back in 2010 (which is when I was paying closer attention), and I would assume that's stayed the same. They are experienced and an excellent choice, other than that they're not using ivus or checking the renal or iliac veins, which admittedly is not standardized or proven yet. And Albany is involved in research, including randomized controlled trials, which benefits all of us. But a nine month wait? I've been through enough pregnancies to know that nine months is a verrrrry long time.

Not if, but when. It's distressing, can't get the science studied so acceptance is assured or denied once and for all, (for treatment coverage), meanwhile Medicare is wising up and rubber stamping NO, with as you say insurance companies to follow suit. This was why I told people if you are going to get treated, do it now because the noose is tightening. If you wait you may have no options in the future, they can stall this entire thing for many years. If you are rich, you don't care because you can pay cash, for the rest of us, this is an important decision to make with long lasting consequences. On another note, in my experience if insurance covers a procedure, such as mine, they are also obligated to cover follow up care since they ponied up for the initial procedure. That is why I don't get too concerned about follow ups such as the one coming up, but as always, a phone call ahead of time can't hurt either.

Even if you have insurance and they'll cover this, if you are waiting you may reach the point where they have a policy in place concerning this for MS patients and it may not be agreeable.



chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14770-30.html#p145076

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

I am not entirely sure that this is true. It is a good argument in case of a denial.

Actually, the news from Medicare is even worst then just denying coverage on future CCSVI procedures. They have contacted me (Explanation of Benefits Notice) that my last procedure, which was done in December 2010, has also been disallowed. They are requesting repayment from American Access Care for the entire amount. This also includes pre- and post- procedure office visits and ultrasound tests.

I would imagine that each medical insurance company policy has its own version of whether or not the CCVSI procedure is covered, but some do follow Medicare's lead.

If you are covered, I wouldn't waste any time getting it done.

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

I thnnk there is currently a person suing the government here in Ontario for re-imbursment for the procedure costs. If she wins, you can bet I'll ride that bandwagon into town as well.

tilt

_________________
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger

Precedence works to our favor sometimes, my insurance covered something they normally rubber stamp a denial on, because it was a result of something they did cover originally, thats first hand experience. Obviously every insurance will have its quirks, exceptions, but I got that covered after forcing the issue and they agreed, no appeal thank God.

While they don't have a stance (yet) on CCSVI specifically, they have cover all 4 follow ups and the "tune up" procedure w/ivus and I'm scheduling follow up # 5 shortly. Granted I'm likely in lonely company, but they are also well aware of my MS too. My network is BS OF CA, but the insurance "purse string holders" as I call them is the same since 1994.

I just find it unreal that any outfit would send someone a bill after covering initially. I don't think that will pass the smell test. The question is can they legally recoup something they approved, implementing retroactive laws, or perhaps in Donna's case we'll say regulations, is murky legal ground. I can see if they prove fraud or the like, but this isn't the case. Sounds like some mid level bureaucrat tried tossing the baby out with the bathwater. Fight em.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Dr. Sclafani has said that when Medicare disallowed the procedure last year, AAC had to pay back everything they were paid by Medicare. AAC chose not to go after the patients for repayment.

psst Donnchadh is a guy and not a Donna...

The Medicare Explanation of Benefits letter specifically stated in one of their numerous footnotes, that the patient is NOT liable for the procedure cost.

Donnchadh, which is Irish.

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

OK folks! I met with Dr Sclafani today for my pre-procedure briefing and Neuro bashing session. God that was therapeutic!

my left Jugular is 20mm(like Daves!) and my right was non-existent. Malformed valve that is elongated in the left and not closing but just flapping in the breeze.

I am on the table at 9am and hope that all goes well. I shall report my progress when possible.

Thanks for the support guys and gals!

tilt
(having trouble sleeping..gee I wonder why?)

_________________
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger

good luck tilt. we will be waiting to hear the results.

Are you saying you do not have a right IJV?

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!