This Is MS Multiple Sclerosis Community: Knowledge & Support

Hey all, I am curious what the costs are for the tests and then the procedure. Also, are you guys using insurance on this?

ikulo

I think most of us are using our insurance - Gibblygook who is from England paid out of pocket. Total costs billed to insurance companies for the tests and the procedure are running aroung $85,000. If you pay out of pocket, that figure might change.

WOW 85.000 US$! Without any deeper knowledge I would have expected costs of about 10.000 to 15.000 USD.

Just out of curiosity, would it be possible to have a more detailed list of the conducted procedures and the prices for each item?

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

Frank -
You wrote

The tests...Ultrasound, MRI/MRV are expensive. My yearly MRI costs around $6,000 - I am in the tube for about 30 minutes. At Stanford you are in the tube for at least 1-1/2 hours. The Ultrasound is also at least an hour test.

You have pre-op and post-op. The procedure can take as long as four hours - you are paying for a surgery room, a surgery staff, medications --then you add on Dr. Dake and the stenting procedure-further testing.

Recovery is one overnight in the hospital with medications.

I realize that $80,000 is a bunch of money --but, as I said this is what was billed to Medicare --this is not what Medicare paid after they took all of their discounts. If you were self paying, you would probably get a discount.

Oh, it is a BIG number.
As I am not able to work my income per month is only 60 (sixty) Euro. Things are often more expensive than in the US.
I was lucky I did not pay for the Doppler ultrasoun in Poland as Dr. Simka included me in his study.
If I find a doctor who can do the phlebography in Slovakia my health insurance company will pay for it for sure.
Well, something is better in my country and something in your.

Just as a clarification:

Medicare paid a % of what is considered an approved amount for the testing and the procedure. My supplement picked up the remaining % of the approved amount. Even though Stanford billed the $80,000, they were not paid that amount. Stanford has accepted assignment of Medicare claims.



My supplemental plan picked up the remaining 20%.

For those who are on private plans (i.e. employers, etc.) the insurance company has a set rate for tests, hospitals, etc.; it could be 100% paid or it might be a 80/20 plan, 60/40 plan, etc.

My copay is a 70/30 major medical deal, but Alex has sent me Stanford financial assistance paperwork to fill out, so there could be even more help for those of us who this is costing a bunch. Make sure you ask her for that paperwork. I'll take all the financial assistance I can get!

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Good information Lew - thanks for posting. Everyone needs to be aware of their own personal situation --we are all different.

Sharon

"My yearly MRI costs around $6,000 - "

those prices sound quite high when not used to insurances!

for us in Finland, MRI in public university hospital (the private ones do not handle most difficult cases or most difficult surgeries) does not cost anything to patient. all tests are free of charge to my knowledge.

seeing a doctor (GP or specialist) is around 23 euros per time (there is also a limit per year that you cannot go over, then you don't pay anymore). day surgeries are all around 70 euros. care day cost per night is around 26 euros.

almost no-one here has special medical insurance, this is just a public healthcare system.

i couldn' even begin to afford this treatment but if it worked i would find a way, someone said it takes 4 months for a lesion to heal does that mean people should see improvements around this time?not just fatigue and brain fog but actual mobility improvments.

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Had ms for over 19 years now.

Hey Robbie...
The hope and prayer is that this will become standard operating procedure for MS patients. Instead of going to a neuro for immune modulating meds, a newly diagnosed patient would see a vascular doctor...maybe have a balloon procedure or stenting. The cost savings long term would be huge....Jeff's Copaxone costs $25,000 a year, plus the other meds for symptoms (like baclofen) he no longer needs. So, the initial procedure will cost some $, but there will be long term savings to insurance companies over the lifespan of an MS patient.

We have no idea how this is going to help people who are further down the MS path (over a 3 or 4 EDSS) because it's going to take longer for healing. Yes, lesions can remyelinate...but what if there is axonal damage? That is the unknown. The hope is that once the reflux and continual injury are stopped, healing and rewiring can begin. But we're only just a few months in on this.

People like Holly, Mark, Sharon, Alex, Lew and Marie will be able to let us know how the procedure has affected their mobility further down the road. So far, spasticity is relieved in most of them. What does the future hold? We'll see. Wish we could be more definite now, but the pioneers are taking the financial/physical hit for everyone else. The science behind this is good, though.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I have severe mobility issues and believe the stenting will halt the progression and cure the disease. Once the immune assault stops, not only will it halt progression and give the body time to heal, it should render stem cell transplants a one time repair, where now it seems to me that it is temporary. Unless the immune response is stopped there will continue to be damage.

Robbie -

Cheer wrote




I "ditto" what Cheer said.

The Stanford "pioneers" have all had different financial issues. Our insurance coverages are not the same. Some have had to pay more than others. As Cheer said, hopefully this will become the new treatment for MS. This is going to take time and I would imagine the big pharmas are going to go ballistic ---again as Cheer said $25,000 a year for Copaxone--big pharmas are going to be loosing a lot of money.

It will be interesting to see how Dr. Dake structures his research trial. Maybe some will be able to participate in the trial without too much financial burden.

Sharon

My insurance has a $3000 deductible, after that it pays at 100% as long as the I am in network. That does not always happen. My MRI is out of network as I have to meet $4000 on those.

My Tysabri cost $6500 a month or $78000 a year! Plus all my other meds.

I don't know if this be in network or not. Waiting on Alex for that info. If it is in network I could be home free and just out travel, hotel and food.....

If not in network, well we will have to see what the extra cost is and go from there.

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.

I will be using insurance. In network my deductible is $250. In network out of pocket maximum is $1750, after that everything is paid for 100%. So essentially after $2,000 everything is covered by insurance. All my testing which includes MRI's is always covered 100%. I checked with my own insurance and discovered that Stanford is considered "in network." Once I went to the Mayo Clinic and was expecting HUGE bills but it turns out that the Mayo was considered "in network" as well. I was shocked but very happy. Depending on your plan there can be a more national in network group of services, especially if the plan is PPO. I am fortunate that my job provides such great coverage.