This Is MS Multiple Sclerosis Community: Knowledge & Support

This is primarily a question for those of us in the US.

Has anyone had any experience with insurance companies and CCSVI?

I could easily compile a list of symptoms that suggest the need to check out my brain drainage. I know my father-in-law got his jugular veins (I think, may have been his carotid artery) ballooned several times when he was having brain fog when he was older, and that got paid for. (Helped alot too). If we could convince an IR to do the diagnosis and treatment and never put MS in the records anywhere, I wonder if it would be covered?

All ideas and experiences welcomed.

I don't know what codes were used at Georgetown for my ultrasound and subsequent venogram with angioplasty. I do know that the vascular billing person did lots of research, and I am sure no MS codes were used, nor should they have been!

This really is a vascular condition!

Medicare + my secondary insurance paid the whole bill.

Hope that helps!
Nicole

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Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

There is this difference between treating us as individuals or as group members...as individuals, it's fine to receive the balloon angioplasty but as group members, it needs to be properly researched first...from what I understand from reading Dr. Sclafani's thread, this is not even discrimination, just the way it works.

The medical establishment seems to be clamping down on this...in truth we are members of the group and not individuals when it comes to this, so it's a matter of getting that fact slipped past an IR or have an IR who is willing to do preliminary/exploratory research/compassionate care and has a hospital administration that is okay with that without the need for an IRB.

Reading back in time through the forum, the recommendation a year ago was to go in with complaints of neck pain, headache, and swelling.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I agree somewhat. If the diagnostic measures and treatment were for MS, the medical establishment and insurance companies are justified in not treating/paying for the procedure. I am sure that is why Georgetown did not mention MS. However if the vascular symptoms were real, then it does not even strike me as fraudulent, although maybe close.

Here is how I break it down:

If I present with a hernia and MS (clearly not related), then the medical establishment and insurance companies should treat/pay for treating the hernia.

If I present with vascular symptoms and MS, the medical establishment and insurance companies should treat/pay for diagnosing the vascular symptomms and if treating them has known health benefits for the patient, then the medical establishment and insurance companies should treat/pay for treating them.

If I present with MS and no known vascular symptoms, then the medical establishment and insurance companies are justified in not diagnosing my vascular condition, even though some doctors have hypothesized a connection between the two. After Buffalo, it may even be proven but that is still partially debatable.

If I present with MS but no vascular symptoms, but the doctors look and diagnose a vascular problem, and relieving that propblem will have known benefits (I think it is established a la strokes that bad circulation in the brain should be relieved) then the medical establishment and insurance companies should treat/pay for the treatment of relieving the condition.

If I present only with MS, and the doctors look and diagnose a vascular problem, but relieving that problem has no proven benefit, even though some doctors have hypothesized that it would help MS but that has not been proven yet, the the medical establishment and insurance companies are justified in refusing to treat/pay for the treatment.

That is my logic. I know insurance companies operate per their rules and not logic, but the doctors should operate according to logic.

But what if an entire group (say, people with T.S.) present with hernias...and lets say hernias have been previously been believed to be acceptable abnormalities...what then?

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

It depends on whether treatment provides improvement to the patient.

If everyone with TS has hernias, just having TS might justify looking for hernias (diagnosis). Here just because a person has MS may or may not justify looking for CCSVI. After Buffalo, a double blind well designed medical study, probably does.

If treating a hernia provides health benefits to patient, you treat the hernia if you find it. Period. Whether a person has T.S. is irreleveant. Here if treating CCSVI provides medical benefits for the patient, you treat it, period. Whether or not the person also has MS.

Three things IMHO are still open to question:
1. whether ballooning/stenting in CCSVI improves brain circulation. Evidence is pretty clear, but maybe you can still argue that.
2.If so, whether improving brain circulation provides medical benefit to the patient. Again, seems pretty self-evident but you can argue that;
3. Whether treating CCSVI improves MS. This one is entirely unproven with only antectodal evidence to date, but this one unestablished link is being used to justify refusal to diagnose/treat/cover any CCSVI related condition.

My understanding is that it's actually points 1 & 2 that are holding up treatment...vein abnormalities in this area of the body have not been well studied and we have heard reports of doctors referring to these as 'normal abnormalities' or as not being of concern because the blood will reroute...but now here is a possible link between CCSVI abnormalities and our m.s. ... so this actually opens up the inquiry of study into abnormalities of these veins.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Actually, I think point 1 only, and as I said, that is still arguable. The IR on the pannel at the presentation on the net with Zamboni surprised me somewhat in saying rather matter of factly that he routinely did venous angioplasty (venoplasty, actually). I had thought most if not all was arterial. I agree that whether the normal variability of venous cirrculation is within the range described as CCSVI or not is still an issue. I think this is why the reflux was so important; other veins are not adequately taking up the slack. Some of the blood actually ends up refluxing back into the brain.

On point 2, I don't think I have ever heard anyone say that inadequate brain circulation is o.k., just that what is being call CCSVI does not really result in inadequate brain circulation (which is point 1) and I agree that is still open to argument.

I have done a little investigation of the insurance issue. Here are a couple of tidbits that might be helpful.

Holly from Dr. Sclafani's office sent me the procedure codes they are likely to use for insurance purposes:



Also Dr. Sclafani posted in his thread on page 39 that the diagnosis might be "cerebrovascular malformation". I looked this up online and the closest match I could find was diagnosis code of 747.81 - Anomalies of cerebrovascular system.

Your insurance may provide a written policy document where you can look up which procedures are covered for which diagnoses. Or you can call them and ask for a pre-determination.

I recently inquired about whether our insurance would cover an MRI using the Haacke protocol. It would cover only the MRI of the brain, which is the standard scan for MS lesions. The rest (e.g. the neck scans, MRV, etc) was denied coverage, so only $2500 out of $9100 was covered.

I have read in this forum about others who have been successful in getting insurance to cover CCSVI testing and treatment, so your mileage may vary.[/quote]

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Choose Liberation.

Please...Let's STOP making excuses for delaying or denying treatment.
Connect it with MS, define it as a vascular problem, no vascular problems, take MS out of the equation...!!!This is not an exercise in semantics. This is the rest of peoples' lives, our lives. We've all had the agony of having to try to communicate with some bureaucrat on the other end of a phone call that, in the first place, was ridiculous for us to be on and NOW it's playing that same game with those in charge of our health CARE. [Sometimes,I really wonder who does care?] I am so tired of being delivered the condescending attitudes with the expectations of our smiling back and accepting all that is put forth as the last word....by the Almighty Arbiters (of what is to be swallowed and satisfying for us.) SORRY. Not this time.
Let's be sure to ,this time, make THEM answer OUR questions and do what THEY'RE told by a group of intelligent, perceptive,responsible, capable people
[that's US]
Stay strong and focused!!!!!!!

Keep in mind Insurance companies make money by not paying claims. One should expect them to deny claims tied to new treatments for MS. That doesn't mean they won't pay them. My insurance for instance has an appeal process that I must follow if they reject a claim. If they deny my appeal, I can appeal again. If they reject appeal number 2, I can then talk to a lawyer and proceed that way.

Important thing to do during this process is find individuals that have had the procedure for MS and their insurance did pay for it. You need to include this information in your appeals, document which insurance companies are paying for it. Also document individuals that have had the procedure and have shown improvements, this will be valuable also.

Maybe a sticky or two could be started.

1. List Insurance companies that have paid for the CCSVI treatment when it was done for MS.
2. List of individuals that are willing to list their name and how they were prior and post procedure. - The Tracking Thread probably takes care of this one.

I think both of these will be valuable for appeals.

I believe the stat is that 70% of appeals end up getting paid for by insurance companies.

Many people won't appeal and insurance companies know this. So it isn't hard to appeal, so you need to do this if your claim is denied. It is an easy process, usually just a letter with some facts like I listed above.
Blaine