My Unexpected Adventure with a Brain Tumor–Part 17 (Medical costs and insurance)

Among other scary aspects of discovering that you have a brain tumor is figuring out how much it’s going to impact you financially.   Most of you probably already know how insurance works, but if you haven’t had to deal with it much in your lifetime yet, here are some details from my recent experience.

The surgeons’ offices did all of the work of looking into our insurance coverage and getting pre-approval for my procedure and hospital care.  We have a Blue Cross PPO plan with a fairly high deductible and a high out-of-pocket maximum, so we knew what the set out-of-pocket maximum amount would be that would gouge us for the calendar year.  Knowing that I also wouldn’t be generating income for awhile had to be factored in to our lifestyle changes as well.  I think that Go Fund Me is a great way to get some support from your community if you find that you are really far off from managing the unexpected costs alone.  We didn’t use it, but I know several people who have for all kinds of unexpected, difficult situations, and it made a really helpful impact.

We learned a few other things through this process that are good to know before getting to the hospital.  I originally thought that I’d like to try to request a private room, knowing that I’d be there for days, but unless it’s deemed “medically necessary” by your doctor (at least at Stanford), your insurance may not cover it.   The same concern goes for staying at the hospital beyond when you’ve “passed the tests” to go home, even if you feel super fragile and aren’t ready to go home at all, which will likely be the case.  So…keep that in mind before you request it.

For any post-op services that might not be in the same calendar year, such as the gold weight eyelid implant or removal, you can call your doctor’s office, ask for the CPT code for the specific procedure you’d have, and then call the outreach/medical billing department to find out your specific cost, based on your insurance policy and where you stand with your deductible in that calendar year.

Brain surgery, of course, zooms you right through your deductible and out-of-pocket maximum for the year, so take advantage of the timing of that situation by looking in to all other rehab services that might be covered by in-network providers for the rest of the year, from eyelid implants to physical therapy, speech therapy, occupational therapy, acupuncture and massage.  (With out-of-network providers you’ll pay more out-of-pocket.)

To give you an idea of some additional costs if you have insurance like mine, you’ll have to get one or two follow-up MRIs in the first twelve months post-op, which I’m sure is common.  In my case they are $2500 each (ouch–this is even with my in-network provider!), and will land in a new calendar year,  since I had an October surgery.  (You should also compare costs at different facilities.  My cost in Santa Cruz is $1500 less than my cost would be to have my MRI at Stanford.)  In addition to that, the cost to remove my eyelid weight, whenever that may be, will be about $2000.  Follow-up doctor visits ought to remain at a $30/visit copay.  We’ll meet our deductible again, at least…

So, check out your insurance policy, your deductible, out-of-pocket-maximum and co-pay amounts, and hopefully this will give you a little more of an idea of what you’re in for financially, and how to schedule your procedures and rehab services accordingly.   AND since this ordeal may very well eat up whatever vacation fund you were hoping to have, then I suggest you plan a cheap camping trip a few months out, even if it’s in your own backyard!  Or go out of town and stay with family or friends!  Or take day trips to beautiful, nearby outdoor places!   Don’t let the medical bills keep you from the good times still to be had!  We’re planning a few cheaper family road trips and camping trips this spring and summer, and I’m pretty excited for some new domestic adventures…


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