Struggling

Day 45

I'm struggling. I know everything will work out for our good, but this process has been absolutely ridiculous!

When I met with my neurosurgeon 16 days ago, we all came to the understanding that I needed surgery, but because it wasn't emergent, we had time to get an MRI and have the surgery preauthorized by my insurance company. My surgeon said they'd start the insurance process right away.

I got the MRI (which I swear took an act of Congress!) but they didn't do a flow study of the CSF to see if the ETV was still open, so it was pretty much a waste of time.

And my neurosurgeon's billing team didn't start the insurance preauthorization process until two days ago. Yesterday afternoon they told me that my neurosurgeon is only covered by my insurance as a pediatric neurosurgeon at Primary Children's Medical Center or if he performs emergency brain surgery on a trauma patient through the ER at Intermountain Medical Center. After talking with my insurance company and asking why I was told he was a preferred provider when I asked them about it 20+ days ago, they apologized, but it was more of a "sorry, not sorry" apology.

To say we are frustrated is the biggest understatement ever. If they had just started this insurance preauth process 16 days ago when they said they would, we wouldn't have had to painfully wait for the surgeon to get back into town over and over again. And he's leaving for another conference tonight through Monday. Yeah. Awesome.

So today we are attempting two things:
(1) to petition our medical insurance company to approve my neurosurgeon to do this surgery because he has the most experience with the ETV than the other neurosurgeons who are in-network, and if it's approved, my surgery will be this Tuesday. If it's not approved, we'll move on and try...
(2) to transfer my medical records to another neurosurgeon (my #2 choice) and have him perform the surgery.

In the meantime, I'm trying to navigate this entire process with all my symptoms of ETV failure. It seems to be a much slower process than my shunt failures that required immediate attention. Glen is having to make a lot of the calls now because I struggle to say the right things at the right moment. Even this post took more than an hour to write. But I want other patients with ETVs and their families to have these plans in place just in case their ETVs fail. Learn from our experience! We brushed it under the rug as we took care of my other health problems. If we'd had this plan, we would probably already be on the path of post-surgery healing.

I know all will be well. I'm trying to stay positive and all of your thoughts and prayers and comments are keeping me afloat. My gratitude for all of you is overwhelming. Thank you!