This Is MS Multiple Sclerosis Community: Knowledge & Support

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Totally depends on your insurance. With none it's obvously higher. I don't know of anyone who paid that much that had insurance, but I could totally be wrong. I was doing the math on my 30/70 split plan and was thinking it was going to be over 25k for me, but then the bills started rolling in and my insurance co. paid a 'negotiated rate' and it wasn't near that. It was still over a few grand, but nothing like I thought I was going to be facing. I really have heard some killer stories about people having to pay hardly anything that were insured with normal, employer based insurance. I'm not sure about Medicare, but I know there has been talk about what that entails, I just can't find the thread. I think you would probably be looking at a bill like that if you had 0 insurance and just paid it all at face value. One for instance is there is part of the procedure where on my explanation of benefits, it was like 76k (I'm sure it was the actual procedure). Well the negotiated rate was just over 20k, so they negotiate quite a bit off the top.

Keep in mind, this was my experience only.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

I agree with Lew. I was pleasantly surprised by my final bill.

Not sure where you got the figure from. Kind of a scary thread title

Not only will everyone's insurance vary, everyone's procedure costs vary too - - how many stents, drugs, etc.

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diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri

Chris - It sounds like you are going to be covered by Medicare. I was covered by Medicare, and a Supplemental Plan---I paid very little. Send me a PM if you want more info on the Medicare. Medicare paid 80% of their negotiated rate for services.

As a reminder to anyone who is going to Stanford --- if you have an insurance plan, say like Lew's, at 30/70, you can apply to the financial aid office at Stanford for help with the 30%. My understanding is they are really trying to accomodate their patients.

Sharon

That's very true. Alex almost pushed it on me once she found out I was dealing with that type of payment. They keep that right in front of you once you express interest in financial aid.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

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I was one of the lucky ones. Because I had meet my $3000 deductible mine paid at 100% of the negotiated rates. So far I have only been out my trip to California. Leaving again Saturday for my followup on Tuesday,

Cat

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

The kind of money you are mentioning in this topic sounds incredible to me.
A private cardiac operation in my hospital, involving opening of the chest, the construction of several coronary by-passes or the repacement of a heart valve, or both together, including 8-10 days of stay, will cost around 15,000 pounds including all medical fees. It is really difficult to understand how an intravascular procedure, even taking into account the cost of the stents, could cost as much as you describe.
GiCi

GiCi, this is part of the reason why so many people in the USA have problems with their health insurance or have no insurance at all. Procedures are incredibly expensive. A friend of mine in Germany gets her yearly brain and C spine MRI's including Gadolinium on a 3T machine. She paid close to nothing and her insurance pays 1,200 Euros, or about 1,800 US Dollars. My last brain and C-spine MRI on a 1.5 T machine at a local university hospital cost $15,200. I think part of it is medical malpractice insurance doctors and hospitals here have.

That's why I told you we should buy you a practice on a beautiful Island state!

(I know this is a long post, but please, bear with me...it has a great ending...)
I have Kaiser Permanente Insurance. It's an HMO. It is through my employer, but my husband owns the business and it still costs us almost $30K a year to insure just my husband, myself & 2 kids...and the worst part is that even though my GP is giving me referral to Dake at Stanford, they are still refusing to pay for ANYTHING!
Alex called to give me that good news last Monday and to give me the costs I will have to pay out of my pocket...(she said everyone's insurance has at least paid for something...except for me and one other person, who also has Kaiser... here's what she told me...
The testing & procedure is $82,000 - $120,000 (depending on the number of stents and how long you are in surgery, etc) and since I am paying for it myself, I will automatically get a 40% discount, but that's still between
$49,200 and $72,000!! That's not including airfare from Atlanta, hotel, car, meals, meds...I did apply for financial aid from Stanford, but Alex said they lost my application, even though I sent it FedEx, sig required...she said their financial aid dept. is HUGE and it would take her literally weeks to track it to whoever's desk it ended up on...and then give it to the one person who is handling the fin aid apps for the CCSVI patients. (So we are getting special consideration.) So, I emailed a copy of my app to her and she fax'd it to the right person, but I wont know anything until maybe just before the procedure...but here's the GOOD PART...
Since I am a consultant, contracted to one of the largest pharma companies in the world, and they own a ton of subsidiaries that are also drug manufacturing companies, (and even one that makes stents) I had an occasion to talk about this to the person I report to, at the pharma company, who is a VP of Worldwide Quality and I told him about the procedure, how much it is going to cost, etc. AND...
(Here's the good part...)He called today to tell me that he meets with the heads of Regualtory for all their companies, once a month, in person, and that they are high level enough to approve the big bucks...like to donate money to charities and that they do it all the time...he suggested that he set up an appt for me to meet with them, after the first of the year, to talk to them about setting up a foundation under the parent company’s name and have a bunch of the subsidiaries sign up to fund it! Then I could run the foundation and take requests from people who don't have insurance or can't pay their part of the CCSVI procedure and recommend them to the foundation to pay for all or part of their procedure!!!!!!!!!!!!! I about fell out of my chair!!!!!!!!!!!!!!
I had run a 501(c)3 once, back in Falls Church, VA...we bought the old Stete Theater that was going to be torn down and had it renovated to a performing arts center. So, I do know a bit about how these things work...but what a perfect job THAT could be, right??????
Of course, it will take a while to heal up, after the stents, get the appt set up, deliver a killer presentation, and then for them to go away and ponder it, ask questions, me respond, they ask more questions, and then if they would agree to do that (talk about a dream come true!) it would take some time to put in place, set up the non-profit organization and hire people to work with me...but I can't think of anything better that could happen (except getting my life back again, through the CCSVI procedure)!! I used to be a Senior (Corporate) Technical Trainer and went all over the world, teaching classes on how to run a Network Control Center. So, I figure if I could teach a 6 week class to people ( some of whom didn't even speak English...like, I taught in Rio de Janiero, Zurich, Rome (it was a cool gig…) then I could certainly, go around the world giving presentations to companies to get them to donate to this foundation! How much easier it would be to talk about something that could make such a difference in so many lives, and that I am passionate about!!!( I'm not half bad as a presenter, if I do say so myself... At least I used to be, until the cognitive problems began about 4 years ago (same time I started on Copaxone and then Avonex...coincidence? I think not...)) and (please, God) let the procedure fix that...I'm digressing from my own topic...sorry...I'm just so excited at the prospect of all this...!!!!
How wonderful this could be, not just for me, but for the CCSVI patients that thought the cost would be prohibitive for them! WOW! My adrenaline gets going just thinking about how great this could be!!
If this does come to fruition, I will need people to work with me, and I believe and am hoping that they will be paid positions...and I figure they can be worked from home (so, of course, MS patients would be first to be considered) the first place I will come to tell everyone about it, will be here on TIMS, and recruit from some of the people who have been so great about the research and sharing their information, time and resources with the rest of us...
If anyone has any experience in this arena, or has an inclination to, please send me an email or PM, as I am going to get started on my presentation right away! That way, while I'm recuping, I will hopefully, feel good enough to get it ready to present, ASAP, to the people who can afford to start the foundation. That way, as soon as I am able, I will work on getting that audience with them! I think it will be a no brainer, to get the meeting, because this guy brought it up to me...not the other way around!! And he is a straight shooter...not the type to just throw something like that out there, if he couldn't make it happen...maybe if we all kept it in our thoughts and prayers...please? I believe that collective thought (like prayers) have an enormous amount of energy that can actually affect the outcome of things...after all, haven't we all been praying for a 'cure' ever since we got the diagnosis?
So, I had to share this with you, so we could all start the mental energy ball rolling and, hopefully, this will become something tangible in the near future...it almost seems too good to be true...at first, I was afraid to even talk about it...afraid it might, somehow, jinx it or that I shouldn’t be so open with something that I was not sure would even happen ...but the more I have been thinking about it, the more I think I needed to tell you all about this, to get help and prayers from you, so this does become reality! And, of course, the people on TIMS are responsible for helping us all to recapture some things we thought we had lost for good...
What a difference you all have made in my life and all the lives of people with MS who will benefit from your hard work, research, willingness to give of yourselves to find out and spread the CCSVI word! You are truly an awesome, amazing, super great, terrific bunch of astoundingly wonderful people...and I thank God for you all every day!

Lisa

CNClear.... All I can say is WOW, YEAH, YIPPEE !!!!. Anything I can do just let me know. I don't need a paid job, I am retired. What I'm trying to do is get St Louis doctors and researchers informed and interested in CCSVI. With daily fatigue and headaches even that is quite a chore. I have been a technical person all my life, never in marketing. But all I think about now is CCSVI and how I can get the word out. Just reading your post blew my mind !!! I'll keep looking for your posts and follow your CCSVI progress.

I'd be glad to contribute putting slides together, as a start. I have experience preparing scientific publications so can help with the technical stuff.

Hi Lisa,

OK my mental ball is rolling. I'm a magazine publisher by trade so I sell ads. It's a f/t paying job and I cannot leave it, but I also do fundraising and pr and just became the treasurer of a 501c3 non profit. I've done some grant applications in my fundraising efforts.

Right now I'm spending my free time on marketing CCSVI in the North East - trying to get doctors aware of it and interested in finding out more.

I think that by the time you get this up and running, our outreach efforts will be at the next level and I'll be able to move onto something else. Let me know when you are ready for your next steps and hopefully our timing will come together.

Michelle

Ozark, Radeck, Bestadmom...

Thank you! You guys are the best!!

Lisa

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