Response from Neuro

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

Postby Sharon » Fri Jun 19, 2009 12:46 pm

And, we are on our way! Great news bestadmom!!
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Postby peekaboo » Fri Jun 19, 2009 12:56 pm

Thanks you bestadmom- good job the ball is rolling now.

It is good to know that they will also to the MRV's what one might not find hopefully the other will. Save big $$$. and help those who do not have/or approved insurance? Too bad intervention will not be included in the trial.
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Postby Sharon » Fri Jun 19, 2009 1:03 pm

Holly,

What I was told was that if all the MS patients have the blockages in the study, then they will go to the insurance companies to get coverage for the tests to be approved for MS diagnosis. -----one step at a time!\

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Postby cheerleader » Fri Jun 19, 2009 1:12 pm

Heard from Dr. Dake...
He has a good buddy at the Toshiba Stroke Institute at Jacobs (the vascular arm of the university) and will be in touch with him to see what's going on.
Oh, this is a very, very good day.

Holly....just saw you posted this on the previous page...yikes, things are moving super fast....
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Last edited by cheerleader on Fri Jun 19, 2009 1:14 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby coach » Fri Jun 19, 2009 1:13 pm

So are they doing the same type of testing- MRV like at Stanford? Live in the southeast so would be a little closer than California. And am wondering if one does have stenosis, would it be easier to get your insurance to cover interventionafter MRV shows stenosis? Cheer suggested I call my insurance anonomously to find out if they cover endovascular stents for venous insuffifiency? How are you other guys and gals doing so far as insurance being willing to pay for the stent surgery. I think that one post (Cheer?) said that Dr. Dake said they were beginning to get some flak from insurance companies about this. Of course health insurance is a real hot potato right now. I do think since I have not used DMD's and saved my insurance company that expense, maybe they could meet me halfway, but again follow the money. Don't mean to sound a little jaded, but insurance companies are in the business to make money not insure people that have health problems. Admittedly I am a little concerned about what may be coming down the pike so far as health care is concerned. Heard someone say on TV that death is cheaper than providing good healthcare. Don't expect or want a free ride, but don't want to have to argue with my insurance after we have paid them handsome premiums over the last 8 years. No company contribution since my husband is self-employed and we don't have the benefit of being in a group to spread the risk and lower the cost. Been trying to figure out that argument for a long time.
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Postby peekaboo » Fri Jun 19, 2009 1:19 pm

sharon wrote:

then they will go to the insurance companies to get coverage for the tests to be approved for MS diagnosis. -----one step at a time!\



Do I understand this correctly, in order to receive intervention, it will have to be for MS? That may take longer than one would want to wait for the powers at be to recognize ccsvi and ms are related. AFter this study is complete then there will be another study following intervention and results of that intervention. With such good news shame on me to think the worst :evil:
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Postby bestadmom » Fri Jun 19, 2009 1:23 pm

Since I'm in Connecticut, my insurance only is associated with doctors in the NY tri-state area. If Dr. Dake does any procedures on me, or anyone outside of my geo area does, it would have to be an emergency.

Insurance stinks. None of the doctors I use even take my insurance anymore. Over the past 11 years, no matter what it's been for, they have systematically dropped my insurance. This goes for 2 ear nose and throat docs - one for me and one for my daughter, 3 neurologists, etc. It's impossible and it takes a lot of time and energy to figure out how to work the system.

I figured 2 r/t tickets, a car rental and hotel is about as costly as paying my neuro out of network to schedule these tests locally, if she is willing to go along with them, and then they might not be done correctly. What drive me crazy that I have a full time job, and all of this jockeying is way too time consuming.
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Postby peekaboo » Fri Jun 19, 2009 1:29 pm

Friggin health insurance :twisted: :evil: :evil:
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Postby Sharon » Fri Jun 19, 2009 2:19 pm

Holly, It is all still good news - it is just there is going to be some "drumming of the fingers" as we wait for all of this to be processed through the channels. My understanding is - the study will give doctors another option for MS diagnosis - use of a doppler which is cheaper than an MRI. The study has little or nothing to do with intervention. In the future, there will be a MS study on the positive/negative effects of the intervention by someone. This is not going to happen soon because the diagnostic study needs to come first - testing at Jacobs does not start until September. The study on intervention will be longer ( 1 year - 2 years??)because you need time to evaluate patients recovery. ........

Aren't we glad that we jumped on Dake's bandwagon so soon? Especially if he is starting to have problems with insurance coverage.
Last edited by Sharon on Fri Jun 19, 2009 6:40 pm, edited 1 time in total.
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Postby javaneen » Fri Jun 19, 2009 5:58 pm

Wahoooo! I didn't log on to TIMS alll day and look what I missed! This is fantastic news for us northeaster' I am so happy that this is all happening I can't even explain it. What absolutly fantastic news! I'm gonna go celebrate. I might even have a beer :lol:
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Postby peekaboo » Fri Jun 19, 2009 7:43 pm

hey sharon - this is exactlywhat i was taking about. we are on the same page :D
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