Thursday, January 02, 2014

The 'Brains' Behind This Year...

Hehe… Ok So That title was a shameless pun! This post is going to fill you in on my brain and where we stand on my journey with Epilepsy.

While most bloggers are posting their 'year in review' posts I'm a non-traditionalist who didn't even watch the ball drop. I didn't see Ryan Seacrest gabbing it up with stars of all sorts, no champagne or goofy 2014 hats for this girl; no instead my hubby wanted a quiet night in and I happily agreed that a slower paced welcome to our new year would be just right.

We enjoyed the slower pace for a change because 2013 was all but slow in a lot of ways. It was a wild ride of ups and downs and we look forward to what 2014 will bring.

February will mark a year from my first Grand Mal seizure. Not my first seizure, just my first Grand Mal, and what seemed like a game changer for us. If you aren't familiar with my story here it is in a nut shell::

-Diagnosed with Epilepsy at age 6

-Controlled and treated with medication until age 13.

-Taken off meds at age 13 with the assumption that I had Juvenile Myoclonic Epilepsy. You can read more about that Here if you are interested in understanding the condition further.

-Between the ages of 13-15 I started to become more 'aware' of my body and realized that something was wrong-I was still having seizures. By the time I was 15 I would go in spurts where I might have 5-6 seizures a day. The type of seizure I have can be described Here.

-At age 17 I went through a re-diagnosis process and was then put back on medication to control my seizures.

-I was controlled and treated with medication from age 17 until late April 2012 when pregnancy hormones started to kick in full swing and I started experiencing an increase in auras. 

-In July 2012 I had 2 seizures while on our family vacation that were completely different from any seizure I had ever had before. While they were still not of the Grand Mal scale they were different in the sense that I wasn't aware that I was having a seizure and I had no memory of the events that occured during. Normally I would be able to remember what was going on during my seizure even if I couldn't 'participate' and I don't ever loose consciousness. 

-As pregnancy progressed the seizures continued and became more frequent. I was being closely monitored by my Neurologist and the high risk OBGYN for the babies' safety. I delivered the babies at 36 weeks gestation and we were all hopeful that delivery would allow my body the chance to get back to 'normal' (whatever that is!) and stop having seizures. 

-All was going well until February 2013 when I had my Grand Mal. Then another Grand Mal in April 2013. I was put on a 2nd anti-epileptic medication and so far this medication has kept me from having any more Grand Mal seizures! :D 

-I continue to struggle with my partial complex seizures monthly. On average, I might have 4-5 seizures a month. 

So that's where we've been and here's where we're going… 

After much discussion and prayer Jared and I decided to pursue further testing to see if I might be a candidate for brain surgery to remove the part of my brain that causes seizures. In order to do this I have to go through a lot of various tests to narrow down other possible reasons for seizures, other treatment options, and most of all I have to be a perfect 'candidate'. Meaning, I have to have seizures in just the right area of my brain where Dr.'s can go in and remove a tiny section of tissue without disturbing any other functions. In order to prove this I've already had a few tests done EEG scans, MRIs, and a PET scan. These tests have all pointed out that I have seizure activity on both the left and the right temporal lobes of my brain but the right side seems to be the trigger side. However, you can't do surgery on a guess SO my Dr. has sent in a referral to the University of Cleveland Hospital to see if they will accept me for invasive testing. You can read more about UH Cleveland and the diagnostics Here

If accepted, I will have to travel to Cleveland and stay there for at least 2 weeks while they place depth electrodes in my temporal lobes to monitor my seizure activity close up. The results of this testing will show us exactly where my seizures originate from and whether or not they are coming from the right temporal lobe and quickly traveling to the left side or if I actually have 2 active seizure causing lobes. If my seizures are only coming from the right I would be a candidate for surgery. If both sides are active then I am not a candidate. 

It isn't fun to think about leaving my babies for 2+ weeks or being sliced open and having to lay in a hospital bed while they induce seizures to get the data that they need. I don't WANT this, but right now it's what I need. I need to explore this option so that I know what the final answer is. I know that at the end of all of this I could go there and have the testing and they could still tell me that I can't have surgery but if that's the answer then that's what I need to hear so I can completely close that door and open the door to life WITH seizures. 

God tells us that we don't have to fear anything if we are his Child so I know that I don't have to fear invasive testing, Surgery, or a life living With seizures. None of these things defines who I am. Getting to that place of complete abandonment-where I forsake what I know in my head and trust God's Character and the promises he has for my life is not an easy road but I'm getting there and I'm thankful that He doesn't force me. He is a perfect gentleman and I'm so grateful for his care of me.  

Isaiah 41:10 
"So Do Not Fear, For I am with you; do not be dismayed for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."     

1 comment:

  1. Christina you are AMAZING! You have a great attitude! None of this sounds like fun at all but you have such a deep faith and attitude...You are a great Woman of Faith!