This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Sun May 19, 2013 5:23 pm

View unanswered posts | View active topics


Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

All times are UTC - 8 hours [ DST ]



Post new topic Reply to topic  Page 1 of 1
  [ 14 posts ] 
  Print view Previous topic | Next topic 
Author Message
WeWillBeatMS
 Post subject: Aetna
PostPosted: Sun May 08, 2011 8:39 am 
Offline
Family Elder
User avatar

Joined: Wed Feb 03, 2010 4:00 pm
Posts: 169
Found something promising from Aetna's website regarding angioplasty for stenoses or occlusions of major veins.

http://www.aetna.com/cpb/medical/data/500_599/0531.html

While it does not specifically mention the jugulars, the azygos, or even CCSVI for that matter it does say:

"Endovascular balloon dilation has been proven to be effective in a great majority of patients with stenoses or occlusions of major veins."

WeWillBeatMS
Top
 Profile  
 
Cece
 Post subject:
PostPosted: Sun May 08, 2011 8:55 am 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
It's saying that stents are experimental and investigatory for any uses other than the listed ones. This would mean that a stent for CCSVI would fall into the experimental/not covered category.

I agree about the part you quoted and I would define the jugulars as among the major veins...but then again it says majority and not all. We know that ballooning CCSVI obstructions has not yet been proven effective.
Top
 Profile  
 
drsclafani
 Post subject:
PostPosted: Sun May 08, 2011 8:51 pm 
Offline
Family Elder
User avatar

Joined: Fri Mar 12, 2010 4:00 pm
Posts: 2977
Location: Brooklyn, New York
Cece wrote:
It's saying that stents are experimental and investigatory for any uses other than the listed ones. This would mean that a stent for CCSVI would fall into the experimental/not covered category.

I agree about the part you quoted and I would define the jugulars as among the major veins...but then again it says majority and not all. We know that ballooning CCSVI obstructions has not yet been proven effective.


why do you say that. effective for what? outflow obstructions are present. we know that other conditions where jugular veins are obstructed have among their symptoms, confusion, fatigue, loss of balance, to name a few.
i would not surrender that point too quickly cece
Top
 Profile  
 
Cece
 Post subject:
PostPosted: Sun May 08, 2011 9:44 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
My optimism has been dampened by the Empire BCBS medical policy document on CCSVI.

It doesn't even matter that Doepp was wrong, it's still in there.

Just as it might not matter that common sense says clearing obstructions will improve blood flow. It's investigatory for CCSVI because it's not proven for CCSVI specifically. :(

I agree about the other conditions. Superior vena cava syndrome, dialysis blocked jugulars, etc. But still it seems we are up against insurance companies that will willfully ignore such similarities.
Top
 Profile  
 
WeWillBeatMS
 Post subject:
PostPosted: Mon May 09, 2011 9:06 am 
Offline
Family Elder
User avatar

Joined: Wed Feb 03, 2010 4:00 pm
Posts: 169
Dr. Sclafani,

Would you consider the azygos & the 4 jugulars "major" veins?

WeWillBeatMS
Top
 Profile  
 
cathyb
 Post subject:
PostPosted: Wed Jun 08, 2011 10:46 am 
Offline
Family Member
User avatar

Joined: Tue Dec 29, 2009 4:00 pm
Posts: 63
Has Aetna been covering the scan and treatment (if necessary)? I'm just curious. I have Aetna and an appointment at AAC on Monday the 14th. I can cover the scan if Aetna doen't, but if they find a problem (which in some ways I hope they do!) I am wondering if I'm on the hook for the procedure.

Oh, and on a personal note, I'm so nervous! I have researched this since December 2009 and can't believe I'm finally getting the ball rolling!
Top
 Profile  
 
WeWillBeatMS
 Post subject:
PostPosted: Wed Jun 08, 2011 1:12 pm 
Offline
Family Elder
User avatar

Joined: Wed Feb 03, 2010 4:00 pm
Posts: 169
cathyb,

I have Aetna and I have been preapproved by Dr Sclafani's team to have the ultrasound in a few days and the procedure the next day, assuming they find CCSVI. We're in the same boat, as I first found out about CCSVI a month after you. Only I'm not nervous. I'm ready for this! :)

WeWillBeatMS
Top
 Profile  
 
1eye
 Post subject:
PostPosted: Wed Jun 08, 2011 2:04 pm 
Offline
Family Elder
User avatar

Joined: Wed Mar 17, 2010 4:00 pm
Posts: 2562
Location: Kanata, Ontario, Canada
drsclafani wrote:
Cece wrote:
It's saying that stents are experimental and investigatory for any uses other than the listed ones. This would mean that a stent for CCSVI would fall into the experimental/not covered category.

I agree about the part you quoted and I would define the jugulars as among the major veins...but then again it says majority and not all. We know that ballooning CCSVI obstructions has not yet been proven effective.


why do you say that. effective for what? outflow obstructions are present. we know that other conditions where jugular veins are obstructed have among their symptoms, confusion, fatigue, loss of balance, to name a few.
i would not surrender that point too quickly cece


It is obvious on examination of any of the thousands of photographs taken via fluoroscopes of the corrective effect on outflow of venous blood. This procedure is exceedingly effective for that. It is exceedingly safe, and has the same, or lower, known rate of restenosis and other post-procedure problems as any other venous catheter-balloon dilatation procedure. There is nothing magic, sacred, or sacrosanct about these veins. Veins belong neither to cardiologists, neurologists, surgeons, nor radiologists. They belong to the patient.

The positive effect of normalized outflow on the CNS and on the rest of the body, cannot be understated, nor can the negative effect of deliberately leaving a major circulatory problem in place, on either the CNS or on the rest of the body. It is not an experiment to repair this problem. It is medicine.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
Top
 Profile  
 
Cece
 Post subject: Re: Aetna
PostPosted: Fri Aug 24, 2012 3:41 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
It's a year later and this is now listed for Aetna:
Quote:
Aetna considers the following interventions experimental and investigational for MS:
Balloon angioplasty/venous angioplasty with or without stent placement

http://www.aetna.com/cpb/medical/data/200_299/0264.html

We might be switching to Aetna. Not good.
Top
 Profile  
 
CureIous
 Post subject: Re: Aetna
PostPosted: Sat Aug 25, 2012 4:39 am 
Offline
Family Elder
User avatar

Joined: Tue Jul 14, 2009 3:00 pm
Posts: 1155
Location: Riverside, CA
My friends niece just went in for scanning, she has Aetna fyi, she was quoted 2000 out of pocket for the scans (not covered), and with out of network (65%) for the procedure, total is 4975.00.
Horse's mouth, seen the email. YMMV
Mark

_________________
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
Top
 Profile  
 
Cece
 Post subject: Re: Aetna
PostPosted: Sat Aug 25, 2012 1:35 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
Thanks, that's encouraging that Aetna is covering the procedure for her. Hope she sees results.
Top
 Profile  
 
CureIous
 Post subject: Re: Aetna
PostPosted: Sat Aug 25, 2012 3:48 pm 
Offline
Family Elder
User avatar

Joined: Tue Jul 14, 2009 3:00 pm
Posts: 1155
Location: Riverside, CA
Will update as her scans are off to Detroit :) for eval.
I told her if she could, get to NY, she chose local and mostly covered by her insurance, its a sad reality not appreciated enough in the CCSVI community, that not everyone has unlimited resources to just pick the choicest pieces from the sampler platter, she has been duly warned repeatedly about the outcome possibilities and chose anyways to proceed, smart, vibrant, lovely young lady and I do wish her the best. Will keep posted as I get it.

_________________
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
Top
 Profile  
 
Cece
 Post subject: Re: Aetna
PostPosted: Sat Aug 25, 2012 11:59 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
CureIous wrote:
its a sad reality not appreciated enough in the CCSVI community, that not everyone has unlimited resources to just pick the choicest pieces from the sampler platter

There are many many people who are priced out of getting the procedure at all. Or who got the procedure and restenosed. As a person who cares about people, I hate it.

But for picking a doctor, if you are self-paying, they are all in the same general range? Maybe a thousand dollar difference or so? I haven't been in the market so I don't know. So for self-paying, it makes sense to me to go if the best if you can determine who the best is, and there is more than one opinion on that!

With insurance, that's a very different situation, if it means paying out-of-pocket for the best versus paying much less but having to go in-network.
Top
 Profile  
 
1eye
 Post subject: Re: Aetna
PostPosted: Sun Aug 26, 2012 2:19 am 
Offline
Family Elder
User avatar

Joined: Wed Mar 17, 2010 4:00 pm
Posts: 2562
Location: Kanata, Ontario, Canada
Quoting from myself:
Quote:
It is obvious on examination of any of the thousands of photographs taken via fluoroscopes of the corrective effect on outflow of venous blood. This procedure is exceedingly effective for that. It is exceedingly safe, and has the same, or lower, known rate of restenosis and other post-procedure problems as any other venous catheter-balloon dilatation procedure. There is nothing magic, sacred, or sacrosanct about these veins. Veins belong neither to cardiologists, neurologists, surgeons, nor radiologists. They belong to the patient.

The positive effect of normalized outflow on the CNS and on the rest of the body, cannot be understated, nor can the negative effect of deliberately leaving a major circulatory problem in place, on either the CNS or on the rest of the body. It is not an experiment to repair this problem. It is medicine.


Use of angioplasty to treat "MS" is considered experimental and not covered. Will some brave lawyer go to bat for normalized outflow, or against deliberately leaving a major circulatory problem in place? How about damages for willful malpractice?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  Page 1 of 1
  [ 14 posts ] 

Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

All times are UTC - 8 hours [ DST ]

Who is online

Users browsing this forum: No registered users

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: