Wednesday, April 9, 2008

Think brain surgery is scary? Try the medical bills.

It's no secret we owe thousands in medical bills. My husband's insurance wouldn't cover me once Medicare started 12/06. Since they wanted to gladly accept our money despite getting busted for putting a microfilm in my file saying to never pay any of claims again (and to be sure to not tell me about it), the state department ordered them release me from our family's plan.

So, I've had solely Medicare since then. It's great because it's a national plan so I don't have to worry about the fact I receive care in 3 states. The bad part is that Medicare only pays 80%.

Right now I can't think of how many of my 14 surgeries were under Medicare, but I'm thinking it's around 5, including brain and spine work, and some odd work for a majorly squished artery.

Most of my neurosurgeries have run about $160,000 just to stay in the hospital (each time). The surgeries are another story, around $150,000 (each).

Now if you have more functional brain cells than I, do some quick mental math.

See the problem with paying 20% of costs? Every surgery, every admission, room and board, doctor visits, fluid drained off the hip, cortisone shots, MRI's, CT's, DEXA scans...this is the reality of not only my life but that of my family's as well.

We go without to pay off as much as possible. Are we making a dent? Not a chance. But we are doing the best we can. We pull off some great creative meals using whatever is on the shelf. Recently I discovered a Big Lots and their wonderfully cheap ($1 and $2) brand-name cereal such as Honey Bunches of Oats (about the only cereal I can handle).

I have been trying for months now to find a Medigap (aka Medicare supplement policy). What a frustrating journey! I sought assistance from the AZ Dept of Insurance, Medicare, and various other sources. There are plans GALORE for SSDI folks. In this state, there are 10 Medigap policies for people under 65 on SSDI. How many of those 10 have a program in my county? ONE.

Well technically, 2. Both are with the same company. I should theoretically be eligible for a no-deductible Medigap policy but it's $345 a month. YOWZAS!

Option 2 they offer the same coverage but it's $184. The deductible is $1900.

There really isn't a choice there. Things are tight enough as it is and there is no way we can have $345 withheld every month out of my SSDI payment.

I meet on Tuesday with an agent from this Medicare supplement company. I pray it will work out. There is no way I can have my CCF surgery redone without it. Now with this Tornwaldt business etc etc, I've just really got to get some help.

It stinks to have to go without even more around here, but beats adding to the astronomical bills already haunting us.


  1. Keesha,

    I am an insurance agent in Missouri. I'll be happy to do some research for plans in your area. I've been working with Medicare clients for about three years, so I know how frustrating it can be to deal with a serious illness, medical bills and all of the red tape. If you would like for me to check for you I'll need your zip code, age and the date you lost your group coverage.

    There is also a website,, where you can plug in your information and find services that you might be eligible for.

    Also, feel free to contact me if you have any questions after meeting with the agent on Tuesday.

    My 20 year old grandson has Chiari Malformation but so far seems to be doing well. I can't imagine what you have been through with all of your surgeries. My heart goes out to you.

    Renee Fox

  2. Hi,
    I actually just came across your blog. I am a fellow Zipperhead :) and just had my second surgery about 3 1/2 weeks ago. My surgeon I use (who I would not trade for anything) is out of network with BCBS. I owe him $26,000 and thats after already paying abaout $20,000. Insurance said their allowable charges for BRAIN SURGERY was $6,000. I don't know what surgeon in the world would do brainstem decompression for that amount haha. So I know what you are talking about. I am only 22 and am about to switch insurance and can only hope and pray nothing goes wrong in the switch over time. My vertebral artery is still pressing into my brainstem so he can't guarantee that I won't have to have another surgery(ies). I would love to get your story though! This last year and a half I have been able to connect to several Chiari patients all over the country. At least we can understand each other, even if no one else truly does :) Hope you are feeling ok today!