Seizures developed after TBI in 2011

Hi everyone. I am new to the group and I am so excited to get to know all of you.

My husband, Travis, fell 30 feet off a ladder at work in 2011. He landed directly on his head and broke his back in 3 different places. He was flown to Springfield, MO to their neurotrauma ICU.

He was on a ventilator for a couple of days then he was put in a turtleshell back brace. The surgeons felt that they could heal better than with surgical intervention. It was a really hard few months.

Then at the beginning of 2012 is when he dropped and had his first full on grand mal seizure. After a lot of testing and imaging, it was concluded that this was due to the head trauma he sustained in his accident.

Here we are in 2024 and the seizures have evolved and changed over the years. Increasing in intensity and severity and changing in presentation. He used to be able to have a full aura, allowing him time to get somewhere safe before it hit.

A couple of years ago, he passed out in the kitchen without warning. He fell face first with his full body weight against his face. He had a nasty gash that I thought needed stitches so I took him into the ER. Come to find out, he completely busted his orbital socket on his left eye. Then he started seizing in the ER back to back and they shipped him back up to Springfield where his neurologist was. They put him on an EEG and even when he was awake and aware, his brain was completely misfiring. They said the EEG was completely abnormal and the wave patterns showed he could start seizing at any second.

He's been on pretty much every medication out there: Vimpat, Lamictal, Depakote, Tegretol - You name it, he has likely been on it.

Our current meds are Keppra 1500mg twice daily, oxycarbmazepine 900mg twice daily and then we have oral Lorzepam as a rescue med if we need it.

Our neurologist wanted to refer him out for possible surgical intervention because he said "you cannot be controlled by medications." So this is our next step.

We were first referred out to Barnes Jewish in Missouri. After getting the run around for SIX MONTHS, they tell us they won't take his insurance. Which is red/white/blue traditional Medicare under disability. I'm a RN...how a hospital can come back and say they don't take Medicare is crazy to me. But I have had others tell me the same thing. I think it might be just for that neurology clinic, but still. They left us hanging for 6 months with nothing.

So I took matters into my own hands and reached out to Mayo. We had a consultation phone call last week with some general medical questions. Then that kicked us up to their Neurology department who asked us more indepth questions about his history.

They wanted his records so I began trying to gather everything from 4 different hospitals across 2 different states. They told me their neurologists would review his records then decide if he's an appropriate patient to take on.

I was able to send in the notes from our local hospital with all the ER visits while I was waiting on the other records.

They emailed me on Friday and told me he had been accepted for an in person appointment and to call to get that scheduled.

We are meeting with Dr. Gregory Cascino on September 16th!

I am hoping and praying that there is something they can do to give my husband back his quality of life. We have more bad days than good days anymore. And he's only 47.

On Father's Day, he was down with a debilitating migraine (another issue with we deal with from the TBI) and he broke down into tears and said that he was so tired of feeling so bad all the time. On the day we are supposed to celebrate what an amazing Father he is, shower him with love and appreciation....it was replaced by pain.

I am literally watching my husband waste away before my eyes and it is frightening.

Has anyone here met with Dr. Cascino??