Long time lurker...my journey begins Tuesday

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

Re: Long time lurker...my journey begins Tuesday

Postby Cece » Thu Apr 12, 2012 7:46 pm

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
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Thu Apr 12, 2012 8:18 pm

Cece wrote: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
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Thu Apr 12, 2012 8:23 pm

tiltawhirl wrote:
Cece wrote: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


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
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Sat Apr 14, 2012 1:50 pm

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
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Sat Apr 14, 2012 3:37 pm

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. :)
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Re: Long time lurker...my journey begins Tuesday

Postby CureIous » Sun Apr 15, 2012 11:33 am

Donnchadh wrote:Medicare has determined that CCSVI venoplasty is "experimental" and will not pay for the procedure. This also effects many private medical insurance policies because they often often Medicare's lead on what's covered.

If this spreads throughout the medical insurance industry, then treatments will revert to being strictly cash only.
I doubt that many can afford that kind of expense.

Donnchadh



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
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
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Sun Apr 15, 2012 11:46 am

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.

I am not entirely sure that this is true. It is a good argument in case of a denial.
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Re: Long time lurker...my journey begins Tuesday

Postby Donnchadh » Sun Apr 15, 2012 12:50 pm

CureIous wrote:
Donnchadh wrote:Medicare has determined that CCSVI venoplasty is "experimental" and will not pay for the procedure. This also effects many private medical insurance policies because they often often Medicare's lead on what's covered.

If this spreads throughout the medical insurance industry, then treatments will revert to being strictly cash only.
I doubt that many can afford that kind of expense.

Donnchadh



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



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
Last edited by Donnchadh on Sun Apr 15, 2012 5:29 pm, edited 1 time in total.
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Sun Apr 15, 2012 1:00 pm

Cece wrote:
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.

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


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
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Re: Long time lurker...my journey begins Tuesday

Postby CureIous » Sun Apr 15, 2012 2:05 pm

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
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Sun Apr 15, 2012 2:43 pm

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... :)
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Re: Long time lurker...my journey begins Tuesday

Postby Donnchadh » Sun Apr 15, 2012 5:34 pm

Cece wrote: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.

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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Thu Apr 26, 2012 10:09 pm

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
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Re: Long time lurker...my journey begins Tuesday

Postby DougL » Fri Apr 27, 2012 8:55 am

good luck tilt. we will be waiting to hear the results.
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Re: Long time lurker...my journey begins Tuesday

Postby Donnchadh » Fri Apr 27, 2012 9:11 am

tiltawhirl wrote: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?)



Are you saying you do not have a right IJV?

Donnchadh
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