Hi. My name is Krista. Let’s start from the beginning..

In late 2019 while I was pregnant, I woke up in a hospital, super confused. After finding out it was a seizure, we thought it was maybe my hormones and that it would be a one time episode. Boy were we wrong.

For the past 6 years, I’ve had every test known to have. EEGs, EMU stays, CT scans, PET and MRI’s and my official diagnosis is idiopathic refractory epilepsy. My neruro team is amazing and I don’t think I would have made the progress I have without them. I went from having around 20 focal seizures a DAY, to a few a day. Most days are good, but when they’re bad… they’re bad. The side effects of my medication makes it hard to function most days. Mood swings, lethargy (I could sleep all day), confusion and memory loss, I’m not myself anymore.

During my last EMU stay, I was in there for about a week. My neurologist was able to locate the area of my brain that the seizures are coming from. Great, right?! My assumption was cool, we can fix this! Turns out.. it’s more complex than that.

I have tried so many medications and still have break throughs almost daily. In an attempt to try and get these under control, I started phase 1 presurgical testing. I went and had neuropsychological testing as well as a stealth MRI to see where my speech, writing, etc comes from. (Which part of the brain). After that testing was done, my neurologist met with my team to present my case!

We decided to move forward and try another route since medication doesn’t work. This is where we’re entering phase 2. Phase 2 will consist of me getting an sEEG in a couple of weeks. An sEEG is similar to an EEG with electrode placing on the head for monitoring. However, with the sEEG, I will be placed under anesthesia and a robot will drill tiny holes into my scalp. The tiny holes will then be threaded by a tiny leads that will go directly into my brain. After they get the leads placed, I will be sent to the PACU and then the EMU for more monitoring. As for how long I will be in the hospital is up to my body. I need to have at least 2-3 seizures for the doctors to get sufficient information and pinpoint the exact location of the tonic clonics and focals.

Once we get the needed information, I will be put under again for the leads to be taken out of my brain. Recovery will take about 6 weeks to be fully ready to go back to normal. The first few weeks I won’t be able to lift anything larger than a gallon of milk. Having two daughters, Age 4 and 18 months, that’s going to be very challenging.

My husband is going to have to miss a lot of work to help out and we’re going to be struggling. I started this to help out with life expenses and hope that I can take some stress off of everyone while I recover. I feel very selfish for going through with phase 2 but after many talks, the benefits I could possibly have, outweigh the risks. After we get the results from the sEEG, the next step will be a resection of the part of the brain where the seizures are stemming from. I will cross that bridge when we get there. I just want to make sure my family doesn’t have to worry while I’m down and out.

As embarrassing as this is to even do, I want to thank you if you’ve even read this far. It’s a book, I know lol. If you find it in your heart to donate, I thank you from the bottom of mine.

I’ll post updates as to how everything is going.

Love,

Krista