Rachel’s Story

 My name is Rachel and I am from Louisiana. I was diagnosed with Epilepsy in January of 2015. I was 26 years old at the time. It started one afternoon in January when I came home from work and my 2 year old was sick. My Dad cooked dinner that night, and my Mom was taking care of my son when I got home from work. All I remember was the details of the night. The paramedics came when my parents called them, because I had a grand mal seizure and later that night I had another one. In one night, I was diagnosed at the hospital and had first met my neurologist. He was Dr. Soltani from the Baton Rouge Neuromedical Center. He would end up taking care of me for my first year of Epilepsy until 2016 when we went to Oschner Medical Center in New Orleans to the Epilepsy Monitoring Unit (EMU).  That is where I met my current Neurologist, Dr. Khan, and his team. 

In August 2017, I had my first surgical operation called Temporal Lobe Craniotomy with insertion of the subdural grid. They wanted to see where the seizure activity was coming from on the left side of my brain. After the surgery, we found out that it was further deep into my brain. Over time, they needed more testing. In July of 2018, the doctor sent us to a team in San Francisco, CA.It was a great way to do some sightseeing as well as research and procedures. I had my first procedure for the Stereo EEG test. They placed 9 probes in my head for about seven to ten days and watched my EEG  in the EMU while off my medicine to help test where my seizures are coming from. They were able to find the seizure source, but did not recommend any resection because of their origin in the speech and language areas. This team did speak to us about the RNS device though.

Later on in the year of December 2018, I was scheduled by my doctor to go see another epilepsy team in Houston, Texas. This team did another full EEG monitoring with their own research and test SEEG. I had 17 probes put in my head and stayed in the hospital for ten days waiting for seizure activity to take place. Finally it worked! 

 With all the testings and procedures, the epilepsy neurosurgeon and team in Houston found a way to perform a temporal lobe resection in my brain. It was an awake surgery in February 2019! They were able to carefully open me up and wake me up to let me speak while resecting pieces of my brain to get rid of the seizure source. I have been seizure free since then and I pray to God Almighty for myself and many others to become free of Epilepsy. We know it is a huge impact on our lives as mothers, daughters, sisters, and friends, but we also know that we can live our lives daily as full as we want by praying to God himself to heal our bodies and make us whole again.

   As much as I have been through in my life, I am happy to say how blessed I am to have so much support through friends and family. I have embraced so much through faith in Christ doing what I felt like I really wanted to do even being feared with having a seizure. When I reflect on my memories of the last 4 or 5, years I will never forget these moments in my life. I will never forget these hospitals, doctors, nurses, surgeries. This could be  mean freedom from seizures or it could come back again. I do not know what may happen. No one will know, because I am still on medication for it and always will be. What I do know is I pray I gain independence back in my life again and to be able to drive again. I am proud to be a part of the Ambassador Program at this time, to continue advocating for other women or young girls with Epilepsy, and to continue to help by doing a fundraiser, or some community involvement for our organization.