Out of state surgery for my wife on medicaid

My wife is terminally Ill, dealing with multiple rare diseases. The main one that I write this post about is called eagles syndrome, it has basically caused these two little boney growths that grow from the skull base. It’s not totally uncommon, but depending on the length of the growths it can cause some serious problems.

For my wife, it has caused her left side jugular vein to be compressed and collapse up into her brain (transverse sinus). Obviously has caused a lot blood flow problems. My wife also has issues eating, so she is on TPN. She has seizures when she eats. Doctors are perplexed by her situation.

We live in CT, she is on state health insurance, we are not legally married because it would mess up her benefits. If she was on my insurance, we would be paying thousands of dollars a month to cover her appointments and medications.

So, after several years of dealing with this and one really awesome GI doc in CT and a donation from family, we were able to see a specialist in Colorado that specializes in eagles syndrome. We set up a surgery date for November and the 2 doctors that we saw (they work together to do the surgery, one is an ENT and the other is a vascular surgeon) both agreed to go into network with CT state health insurance in order to do the surgery.

So that all happened in April, the surgery is planned for November. Now comes the difficult part. In order to have the surgery covered, the hospital needs to go into network as well. So we are working on getting all the paperwork together so all of these places can go into network. The ENT and the vascular surgeon are all on board (they both have separate private practices), but they can’t vouch for the hospital and say “we promise they will go into network” they are willing to communicate with the hospital, but it’s on us to work with the insurance.

We are worried, dealing with insurance has been a pain in the ass. We are really worried they will fight us on all of this. We tried to get them to cover the exams and scans out in Colorado, and we spent 3 years trying to get them to do that. They just don’t consider this an “emergency” no matter how much the GI doc has said it over and over again.

So, if all fails and insurance denies to pay for any of this and the hospital refuses to go into network, we were thinking of leaving everything (my job and our apartment) in Connecticut and take our camper van and be homeless in Colorado and hopefully getting emergency insurance out there, then the surgery would be covered. How reasonable is this plan?

It’s scary because my wife would have to go off TPN, which is life support. We don’t know how long she can be without it (longest she’s gone is 3 days, and it was rough because she is starving). We have the ability and plenty of materials to care for her port as far as dressing changes and line care go.

Sorry for the rant, I hope someone familiar with state insurance can give me their opinion because time is really running out. If we miss the surgery date we likely will have to wait another 6 months to schedule another one.