I got a response from UT Southwestern

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

I got a response from UT Southwestern

Postby Johnnymac » Tue Dec 08, 2009 12:43 pm

Calling into the IR department I spoke with a very nice lady who listened to why I was calling and asked me to send her some information that she would in turn pass on. I sent her the latest release of the zamboni study and the document detailing the imaging protocol to test for CCSVI. I just got a response from an individual who my information was passed on to and it is very encouraging in that once this theory gets independently verified and doctors can prove to insurance carriers the validity of performing this procedure on MS patients then we may have a brighter future....

_____________________________________________________________

I am the Nurse Administrator/Research Coordinator in the Neuroradiology division here at UT Southwestern. Your email was forwarded to me. I read/watched with interest the articles about CCSVI. I am anxious to see the results of the Canadian Studies once they get underway. This would appear to be a relatively easy treatment to relieve MS patients, even if temporary.

In reference to the procedure itself. We have performed intracranial venous angioplasty and stenting procedures for different indications including venous stenosis. This seems to be the heart of what CCSVI treatment addresses. The procedure itself is pretty straightforward and low risk.

The hitch (and of course there always is one) is that MS is not an "approved" indication for this procedure, meaning insurers and medicare will not pay for it or any part of the hospitalization and liability for the providers would be a concern. A procedure performed in a clinical trial (research) often is funded by a grant or special interest group (like the MS Society). I see that there is some early research beginning on this in Buffalo but it is only diagnostic studies at this point and not treatment.

Perhaps that is more information than you need but the bottom line is this: our physicians do the procedure (for other indications).

I will cross my fingers that this proves to be a successful therapy.

XXXXXXXXXXX RN
Neuroradiology Division
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Postby prof8 » Tue Dec 08, 2009 12:52 pm

WOW!! That is awesome. (aside from getting insurance to pay for it).
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Postby ozarkcanoer » Tue Dec 08, 2009 12:59 pm

OK, I can't say awesome now, prof8 already did. So I'll say that i tis sooooo groovy, LOL.
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Postby Johnnymac » Tue Dec 08, 2009 1:10 pm

you know, i think the response from the majority of interventional and neuro radiologists is going to be the same. They have performed similar procedures for other conditions many times and will be all for doing it for MS patients once "the man" says its OK.

I also think insurance companies will be on board with this once the theory has been independently verified in a larger scale study (come on Buffalo!!). It would make sense for the insurance companies to see if this procedure would allow the discontinuation of some of the high-cost pharma drugs currently treating MS. I think the 'official' line will be for doctors to recommend dual treatment for a while until long-term results are in, but I can almost guarantee a TON of MSers currently taking CRAB or other drugs to treat their MS will discontinue their use to see if the CCSVI treatment really is working.
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Postby ozarkcanoer » Tue Dec 08, 2009 1:14 pm

I sent the nurse of my neuroradiologist (both of whom remain anonymous) your post Johnnymac and here is her response :

" I have to agree with what is mentioned below. It is just a matter of getting to a point where it is proven so that the procedure and or stent is approved for that use.'
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Postby mormiles » Tue Dec 08, 2009 1:31 pm

Hi John, I asked the doctor who treats Steve's MS to write a prescription for imaging to check for CCSVI. When the imaging was done and revealed stenoses, Steve became a patient who had venous stenoses of the jugular veins with neurological problems that could be linked to the CCSVI caused by those stenoses. The procedure was done to correct the stenoses. Our insurance has paid for all this.

The prescription was for a suspected problem. The imaging verified the problem. At that point, the MS faded into the background, and Steve metamorphosed into a venous patient with neurological implications. This is a vital difference in presentation and viewpoint as concerns insurance.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Johnnymac » Tue Dec 08, 2009 1:39 pm

interesting Joyce. I think that workaround is going to be the path to take for those wanting treatment now. I'm going to keep going down this path and hope to at least get Courtney tested soon....and who knows, perhaps a doc can treat her Venous Stenosis and not her MS....
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Postby EnjoyingTheRide » Tue Dec 08, 2009 1:44 pm

I wonder what "indications" the Nurse Administrator was referring to.
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Postby prof8 » Tue Dec 08, 2009 1:47 pm

Mormiles, where did Steve have his testing and procedure done? In your home town?
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Postby jay123 » Tue Dec 08, 2009 1:53 pm

Johnny,
Stanford (before the a-holes from the MS clinic got involved - have to throw that in) had no problem getting the procedure covered by insurance. You might want to call/email Alex and ask for advice.
After I read your first post I put a call in to an extremely well off Dallas (isn't everybody in Dallas rich?? - lol) relative who of course takes forever to get back to me to find out if she is friends of anyone who might be able to help. I'll be getting back to you if I hear.
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Postby Johnnymac » Tue Dec 08, 2009 1:57 pm

Thanks Jay, I look forward to hearing any news you get, I'll share the same!

I wish everyone in Dallas was rich lol....I'm barely able to afford the tolls just to drive to and from work haha...
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Postby mormiles » Tue Dec 08, 2009 2:06 pm

prof8, The imaging was done at Stanford, and Dr. Dake and another doctor at Stanford did the surgery. I could be wrong about this, but I have always assumed that when dealing with the insurance companies, Dr. Dake's office has focused on the venous insufficiencies all along and not the MS. Prequalifications and claim filings in territories that are more familiar to the insurance carriers are much safer ground than indicating something revolutionary like doing something experimental to treat MS that nobody's ever heard of before. Insufficiencies/obstructions of cerebrospinal veins are already well known to cause neurological problems, but linkage to MS is entirely new territory. Best not to go there.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Johnnymac » Tue Dec 08, 2009 2:39 pm

A follow-up response, this is encouraging and I would recommend anyone that is out there looking to start emailing/calling around to your local university medical departments and radiology clinics. Talk to your GPs and see if they will refer you for testing for Venous Stenosis....take MS out of the picture as you talk to your Doc...unless you want to wait until the procedures are 'approved' for treatment of MS patients.....email response below.
_________________________________________________________

Her MD can order an ultrasound. There are some ultrasound studies done in the Neurology Department or in Radiology here at UT. If there was an obvious venous stenosis, her doctor could get a consult with one of our doctors for possible venous angioplasty/stent placement for venous stenosis (not MS).
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Postby cheerleader » Tue Dec 08, 2009 3:42 pm

Hey Johnny...
nice work. This is how we did it at Stanford, using headache and edema (swelling) as indications of venous insufficiency. No mention of MS. THEN, when the MRV showed no jugular return, the surgery was covered by insurance, since 50% venous occlusion or higher is covered by insurance, due to KNOWN risk of damage to the organ the veins drain. NO MENTION is made of MS, and honestly, why should there be? My husband had venous occlusion and it created something that looked like MS in his brain...remember, MS is a disease of EXCLUSION.

SO glad you pursued this with the neuroradiologist. THIS IS THE WAY, people. These doctors understand the jugular veins and how they impact brain health. They have the tools and the knowledge and know how to treat. Way to go.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Great Info

Postby judipom » Tue Dec 08, 2009 5:10 pm

Hi all--Judi from North Carolina here. This is very useful information. I live in an area of immense medical resource. The surgeon I emailed at Duke replied that they weren't doing that procedure for MS yet. However, I'm going to get in to see my GP and ask her to have me evaluated for venous occlusion. This is great info. You guys are awesome. Judi
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