"Up with your chinny chin chin!"

Day 50: I have that "Chin up!" song from "Charlotte's Web" stuck on repeat in my head... I don't know if any of this will make sense, but here it is...

- My neurosurgeon is not considered a preferred provider with my insurance, but other than the pediatric neurosurgeon's at Primary Children's, there aren't any doctors in the IHC network who can do this surgery. We thought there was one who could, but we found out yesterday that he doesn't feel qualified to do it and turned down our request for his help. His boss, Dr Peter Maughan (to whom I'm 90% sure we're related because my third-great grandfather is Peter Maughan), is reviewing my case and my appointment with him is set for July 19. Yes. JULY. And this is the same surgeon who told my pediatric neurosurgeon friend last week over a few rounds of golf that he doesn't feel qualified to do my surgery!

- My neurosurgeon's billing/insurance team were supposed to start the process to have him approved as in-network three weeks ago, but they didn't submit the paperwork until last Thursday. It might **MIGHT** get approved today, but not in time for this morning's surgery.

- We considered having the surgery anyway and hoping we could appeal after the fact, but that's roughly a $15,000-$20,000 gamble and a little to high for my comfort.

- If my insurance denies my neurosurgeon as in-network, then we will appeal the decision. We don't think it would be difficult to get it approved the second time around now that we know the other adult neurosurgeons in the IHC hospital system don't feel qualified to redo my ETV.

- Yesterday we started exploring the idea of having my pediatric neurosurgeon do this operation at Primary Children's, but it's a long shot. It would be AMAZING if they'd allow it, though!!

So here's to more waiting and praying and hopefully not more crying. The latter only makes my head hurt worse. I never imagined we'd have to deal with the runaround like this. It's absolutely ridiculous, but the alternative is receiving another shunt and I'm not going down that road unless we absolutely have to.

This is kind of getting old...

Day 47

I lost my patience yesterday afternoon and ended two calls when both office managers were mid sentence. They wouldn't let me speak to an actual nurse or PA or anyone who understands hydrocephalus and why it's a VERY big deal that the neurosurgeon know the severity of my symptoms. These ladies were trying to explain to me their office policy for the neurosurgeon they each represent. I've been listening to the same explanations for over a month and I was beyond done with the excuses. I enjoyed my righteous indignation for being so rude until I saw this inspirational message posted by another friend of mine. Instant humility check, right there.

So we obviously didn't make any progress yesterday except to be more clear about our options.

My surgery is scheduled for this Tuesday if...

(1) Our insurance company approves my neurosurgeon's single case agreement (a petition that makes him an in-network doctor for this one surgery). But his billing/insurance department haven't sent anything to my insurance company yet. Once they do, it can be approved rather quickly, but I'm losing hope that they'll get this approved on time.

(2) Gamble the cost of the neurosurgeon's fee (which would be quite the amount!) and fight insurance after the surgery. Everything else would be covered.

(3) Be admitted to the hospital through the emergency department Monday night or Tuesday morning and have the neurosurgeon bill the surgery as if I were a trauma patient. And truth be told, I think this is the plan we'll follow if my neurosurgeon isn't pre-approved. My insurance company told me that if this is the scenario, then he'd be considered in-network because it's an emergent surgery.

If ANYone else showed up to the ED with my symptoms and they did not have previous history with hydrocephalus, then they would take one look at the CT or MRI pictures, make note of the symptoms, and operate right away. My shunt failures were SO catastrophic that there was never any question I needed surgery. But the symptoms never had a chance to escalate to the ones I'm experiencing now with this ETV failure. My theory is that the neurosurgeon's don't feel a sense of urgency because I'm still coherent and able to walk and talk. Ridiculous, right?!!

If we choose NOT to do any of those three options, then we'd have to wait for neurosurgeon #2's office staff to get everything lined up for surgery and we have NO idea when that would be.

Thank you for your love and support my friends! I seriously can't imagine where I'd be emotionally and spiritually without all of your prayers, phone calls, texts, dinners, and FB posts/messages. We've GOT this!!

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!

Inconvenient Neurosurgical Conferences

Day 42

Grateful for doctors who take the time to be the best in their field! Now if only one particular doctor would just get back to Utah already...

I'm grateful he's attending a conference at which he is gaining awesome knowledge that will help many people in the future, but my patience is struggling. 

Breathe. 

Somebody? Anybody??

Day 40

There are only a few neurosurgeons in Utah who can perform an endoscopic third ventriculostomy (ETV). In this procedure, the surgeon creates a hole at the base of the third ventricle thus creating a pathway for CSF drainage. It takes less than ten minutes. I had this surgery almost thirteen years ago. And it seems the hole they made has either closed, partially closed, or is still open and just not draining enough CSF. The first two scenarios require doing the ETV again. The last requires the placement of a shunt.

So of those few neurosurgeons with whom I have complete confidence in doing the ETV, more importantly doing the ETV in MY brain, only one is covered by my insurance AND he's out of town until late next week "at the earliest." Yup. This means, that if my symptoms get worse, I get to go to the ER and take my chances with neurosurgeons who think they can do this procedure and maybe they'd be fine, buuuuut... It is my brain and a big ol' artery is millimeters from the tool they use to make the hole. I'd really like the best of the best in the O.R.

We're voting that my symptoms don't get worse and that I can hold out until whenever this surgeon gets back.

Not This Day

Sometimes I just lay around hoping that the headache will go away or that the neurosurgeon can fit me into the O.R. schedule or any of the bagillion pain management techniques/treatments will work... Oh. And the neurosurgeon is out of town until the end of next week at the earliest. My pain management doctor who helped me with my pelvic pain last year doesn't treat CSF pressure headaches. I don't see my new neurologist until Wednesday. So everything is kinda crazy!!