DrSclafani answers some questions

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

Postby Cece » Wed Jul 21, 2010 9:14 am

L wrote:On the spot reportage! That's pretty good! Is it a nice waiting room? Will we get an update from the examination room?

:lol:
Hope your veins are wide open!
Great point, girlgeek, about the azygous.[/quote]
Last edited by Cece on Wed Jul 21, 2010 11:56 am, edited 2 times in total.
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Postby girlgeek33 » Wed Jul 21, 2010 9:23 am

Not bad, nice hospital & free wifi! :)

Will post when I'm done....
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Postby L » Wed Jul 21, 2010 11:21 am

Dr sclafani's symposium is reported here: <shortened url>
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sleeping giant

Postby Cece » Wed Jul 21, 2010 11:55 am

drsclafani wrote:a treatment clinic could be built for a six figure sum using good used equipment and could actually be profitable as long as insurers choose to pay for procedures. and i will bet we find that sleeping giant waking up soon.

This was posted today on Facebook:
Here we go with the insurance companies in the US..... Blue Cross is denying my MRV. The IR used the correct codes for venous compression- not MS- but it is obvious why they are denying it. The IR is going to call to appeal- let's see what happens.

Harbinger of denials to come? This scares me....
"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
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Insurance Companies

Postby 1eye » Wed Jul 21, 2010 1:34 pm

Can that one be fought in court?

I think the giant has some toes to wake up yet.

Anybody got a match?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby newlywed4ever » Wed Jul 21, 2010 7:48 pm

Quote:
Here we go with the insurance companies in the US..... Blue Cross is denying my MRV. The IR used the correct codes for venous compression- not MS- but it is obvious why they are denying it. The IR is going to call to appeal- let's see what happens.

Harbinger of denials to come? This scares me....

Cece - don't know where on FB this was but if BC gave a verbal approval either to patient or provider, they can fight it (with dates of verbal approval) and win. I did this with a walkaide and WON!
p.s. do you happen to know which provider this person had seen?
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Postby Cece » Wed Jul 21, 2010 9:17 pm

newlywed4ever wrote:Cece - don't know where on FB this was but if BC gave a verbal approval either to patient or provider, they can fight it (with dates of verbal approval) and win. I did this with a walkaide and WON!
p.s. do you happen to know which provider this person had seen?


Here is the Facebook page, it is halfway down the page: http://www.facebook.com/pages/CCSVI-in- ... 0796282297

Good to remember that even if insurers deny this, there is potential to fight it. Glad you got the walkaide. What a lousy disease that makes walkaides necessary.

The reason given by the insurance company was "not medically indicated" to deny a preauth on a MRV ordered by an IR. She does not name the doc.
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Re: sleeping giant

Postby drsclafani » Wed Jul 21, 2010 9:43 pm

Cece wrote:
drsclafani wrote:a treatment clinic could be built for a six figure sum using good used equipment and could actually be profitable as long as insurers choose to pay for procedures. and i will bet we find that sleeping giant waking up soon.

This was posted today on Facebook:
Here we go with the insurance companies in the US..... Blue Cross is denying my MRV. The IR used the correct codes for venous compression- not MS- but it is obvious why they are denying it. The IR is going to call to appeal- let's see what happens.

Harbinger of denials to come? This scares me....


insurers are correct
there is no legitimate indication for an mrv. the standard screening test is doppler (cheaper, has precedent)
angio is indicated (i hope) if veins are stenotic
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Postby KDGO » Thu Jul 22, 2010 7:29 am

girlgeek33 wrote:How to do a follow up exam of the azygous veins? If I understand correctly, it is very difficult to get a good view of these veins until catheter venography. How do you think this will be monitored in follow up visits? Base it on symptomology?

Thankfully, Dr. Bonn has a great follow up plan. I'm currently in waiting room for my 3 month follow up exam. :)


Wishing you the best!
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Postby nicknewf » Thu Jul 22, 2010 8:46 am

Dr. Sclafani,

Are the following facts and logic sound?

1. Existing data suggests that there is a correlation of between 50% and 90% between CCSVI and MS.
2. An indication of 50% likelihood of a vascular condition, such as CCSVI, is sufficient to justify an exploratory venogram to determine whether there is CCSVI, as well as the location and extent of vascular disorder.
3. If CCSVI is diagnosed by means of a venogram, the safest and best course of action is continuing the procedure to perform a balloon venoplasty on affected areas with patient informed consent to avoid the unnecessary risk and complication of a second procedure.
4. There is sufficient evidence to suggest that treating venous insufficiency, including CCSVI, provides a benefit to patients without undo risk.
5. There is nothing to suggest that the risk of treating venous insufficiency is any different for pwMS then the populations on which venograms and venoplasty is currently performed
6. Therefore, there is no reasonable basis on which to deny pwMS access to testing and treatment (if indicated) for CCSVI or on which to prevent qualified physicians from providing testing and treatment for CCSVI to pwMS.


Thoughts? Errors? Ommissions?
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Postby WeWillBeatMS » Thu Jul 22, 2010 10:47 am

Dr. Sclafani,

I met with a vascular surgeon who says that he will be meeting with you Sunday or Monday. He's in West Palm Beach. My ultrasound that was done in his office did not show reflux which of course is a bummer for me. But this doctor told me not to give up because the azygos vein could be stenosed. I was truly amazed at how passionate he is about CCSVI as he said he's treated 7 people and saw amazing results before the hospital shut he and his I.R. partner down.

I just wanted to say thank you for all the time you spend answering so many questions from all of us and God bless you in your continued effort to move CCSVI out of the shadows.

Even if I end up not showing any signs of CCSVI with all the available testing, I still want to help bring it into the limelight for all of the people that I know and don't know yet with M.S.
<div>WeWillBeatMS<br /><br /><br />Zamboni for President!</div>
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Postby Cece » Thu Jul 22, 2010 11:39 am

nicknewf wrote:4. There is sufficient evidence to suggest that treating venous insufficiency, including CCSVI, provides a benefit to patients without undo risk.

I would question this one. While we can intuitively extrapolate from CVI to CCSVI, scientifically CCSVI needs to be proven on its own; there may be different risks and definitely different benefits to the treatment of a condition so close to the brain. Where is the evidence of the benefits of treating CCSVI? Where is the evidence that the risks are not undue? Wouldn't a 200 person safety study by a much-beloved doctor have gone a long way in answering the latter of these questions? :) :(

drsclafani wrote:insurers are correct
there is no legitimate indication for an mrv. the standard screening test is doppler (cheaper, has precedent)
angio is indicated (i hope) if veins are stenotic

You had me up until the (i hope). I'll be keeping a watch for doppler or angio denials....
"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
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Postby nancymno » Thu Jul 22, 2010 11:58 am

newlywed4ever wrote:Quote:
Here we go with the insurance companies in the US..... Blue Cross is denying my MRV. The IR used the correct codes for venous compression- not MS- but it is obvious why they are denying it. The IR is going to call to appeal- let's see what happens.

Harbinger of denials to come? This scares me....

Cece - don't know where on FB this was but if BC gave a verbal approval either to patient or provider, they can fight it (with dates of verbal approval) and win. I did this with a walkaide and WON!
p.s. do you happen to know which provider this person had seen?


This was posted 2 hours ago on FB's CCSVI in MS page:

"Super good news! My IR called the doctor at Blue Cross who denied my MRV. They spoke today and my IR "educated him" about CCSVI. The doctor from Blue Cross wasn't familiar with CCSVI, but once the IR explained everything he approved the MRV! This could be a good beginning for many of us in the US as the insurance compa...nies will be setting precedents. I will keep you posted along the way so we can follow the approval process for each step. Blue Cross is one of the biggest payors in the US, so if they cover the entire thing this will be a huge step! Thanks for everyone's support!"
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Postby LadyGazelle » Thu Jul 22, 2010 12:12 pm

I called Albany Medical Center and left my name and phone number on the "CCSVI voice mail" line. Then I called again and talked to someone LIVE... who said they only use MRV to diagnose. If I had a TCD done in Rochester, it wouldn't be of any use to them. She said they only use balloons and don't do anything in the head.

Do I need stents for inverted valves in both jugulars? Stents would hold them open all the time. That doesn't sound good either.

PLEASE - Help me understand.

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Postby nancymno » Thu Jul 22, 2010 12:24 pm

LadyGazelle wrote:I called Albany Medical Center and left my name and phone number on the "CCSVI voice mail" line. Then I called again and talked to someone LIVE... who said they only use MRV to diagnose. If I had a TCD done in Rochester, it wouldn't be of any use to them. She said they only use balloons and don't do anything in the head.

Do I need stents for inverted valves in both jugulars? Stents would hold them open all the time. That doesn't sound good either.

PLEASE - Help me understand.

LadyGazelle


I am scheduled in Albany August 24th. I've only spoken to the doctor's office - not any hospital or medical center. According to the person I scheduled with and the doctor I spoke with I will be receiving a catheter venogram - no pretesting since the catheter venogram is the gold standard. If I have any prior tests (which I do not), I can bring them with me. I was told they only use stents if they absolutely have to. They try to open the veins with balloon therapy and then you do follow up ultrasounds in your own location at 3, 6, 12, 18 and 24 months.
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