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Surgery Snafu

waiting

Hello loves. I want to shed light on why I haven’t had surgery yet. It’s kind of a crazy story. If only my life wasn’t on the line, this might be funnier! I’ll start back toward the beginning…

In October my head hurt. Suddenly and a lot. We had to see doctors and get a brain MRI, but guess what? My insurance, which we hadn’t yet changed over from the state of Washington for a variety of reasons, wasn’t accepted. No one would see me except in the ER unless I had California insurance, even though I had Medicaid which is a national program. Whatever.

So we got insurance. Our monthly share of costs for Medicaid is $1409, very not affordable for us, so with a lot of thought and planning we got an emergency MRI and then chose to wait out November and see doctors in December, planning to have surgery also in December. To save $1409 that we didn’t have. We sought professional advice on this and created an array of helpful supplements and medications designed to get beyond the blood-brain barrier and hopefully shrink my brain tumors.

December came. In the first week we saw doctors and got scans. We assumed I’d have surgery almost immediately. Certainly before Christmas. But! The neurosurgeon had options! We really liked the option of laser probe surgery — way less invasive and way less harsh on the body and way better chances for my longevity. We were told it could be scheduled in 3-4 weeks. Ok, we thought. I can hang on that long.

Oh, and insurance! January 1 I became eligible for Medicare. They just put me on it automatically. Great, right? I thought so. I was wrong. Medicare only covers 80% of expenses. I still need a backup insurance plan. We are not eligible for the program we liked through the Affordable Care Act. So I still have Medicaid as well, and I still have to pay up to $1409 every single month that I see doctors, get medical care, or fill prescriptions, for the 20% of costs that Medicare doesn’t cover. Jeez.

December came and went. Then it was January. The neurosurgeon kept telling us he should have a surgery date soon. My beloved was getting nervous. When were they going to schedule the surgery?

He started making phone calls. He already had the neurosurgeon’s private phone number. Finally, we got more of the story that the neurosurgeon hadn’t been able to tell us.

This laser probe brain surgery technique is very new. Only a few doctors and hospitals use it. It requires a dedicated MRI suite and 11 technicians and physicians including the neurosurgeon. My neurosurgeon has been doing them for less than a year, I think (and with decades of regular open craniotomies before that), but said he believes this technique will soon become the standard of care everywhere. I trust him. I believe him. He created this program at this hospital and it’s been his project for three years, he said.

The hospital cut the program abruptly, without warning, at the beginning of the year (2015). My neurosurgeon fought this, hard. They no longer do laser probe brain surgery, which at this point I see the benefits of so greatly that I insist on it as long as it makes medical sense.

Evidently it’s like SECRET INFORMATION as to which doctors do this procedure. Google is not my friend right now. My beloved is tracking down doctors’ names via the equipment manufacturer. He is the most persistent and tenacious man I know. He won’t stop until I get proper care.

So where are we now?

1) Looking for doctors (neurosurgeons) within several hours’ driving distance who will perform this procedure pronto.

2) Arranging for my copious records to be sent to these few doctors so they can evaluate me for treatment.

Meanwhile, based on the last two MRIs I had and me not feeling that great, these tumors are probably not getting any smaller. It’s possible I may no longer be eligible for laser probe surgery if the recurring tumor has grown too large.

That’s how it is. We hope to know more soon.

 

Much love, as always.

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