Victoria Godinez

First post: May 18, 2023 Latest post: Jun 22, 2023
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Victoria will be going through a lot in the coming months, and we figured this would be a great idea to keep everyone connected with her journey. 

Here’s where the beginning of “Victorias venture” began……

Victoria had her first seizure when she was 3 years old. She was diagnosed with epilepsy.

Epilepsy is a condition characterized by recurrent seizures. A seizure is excess electrical activity in the brain that causes different symptoms depending on the part of the brain that is affected. She has focal partial seizures. Basically, her seizures are in her frontal lobe on the left side; therefore affecting the right side of her body. The frontal lobe controls movement, problem solving, planning, reasoning (judgement), personality, memory and speaking/language production. All seizures vary in appearance. Victorias seizures affect her right side so the right side of the body (mainly arm) will begin twitching with her eyes fluttering and head leaning towards the side. Her body falls to the side. She always “laughs”. Depending on the strength of the seizure she can have temporary paralysis of her right side.

We essentially knew NOTHING about Epilepsy to be quite honest. She had one seizure, then they wouldn’t stop. She underwent every test in the book. Her seizure reasoning was unknown just like 50% of epilepsy cases. Victoria goes to Occupational therapy, speech therapy, and physical therapy(regular and intensive). She has been in therapy since right after the seizures started.

Fast forward to 5 years later, She’s currently on 5 medications, 3 different times a day. She still suffers from anywhere between 10-15 seizures a day. She’s tried so many medications that did not work and her seizures are still uncontrolled.

Last June we went to Mayo for a surgery consult. They have a stronger MRI then here in the cities. The doctors found Victoria has focal cortical dysplasia which is the cause for her seizures. She underwent a surgical monitoring (SEEG - is the surgical implantation of electrodes into the brain in order to better localize the seizure focus.) During this surgery we were hoping to find out that she was a candidate for resection - an ultimate “cure” for epilepsy. That was not the case, as her seizures are coming from a major control area in her brain.

Doctors suggested Deep Brain Stimulation implant. The “normal” DBS implant is 1 electrode inserted in the thalamus. In Victorias case, they will be implanting 4 total electrodes, 1 in the thalamus and 3 in seizure focus areas. The electrodes will be sending continuous stimulation to her brain to calm down all the abnormal electrical discharges. She will have the electrodes connected to a wire that is tunneled down her neck and into a battery pack in her chest.
This type of surgery is only a year old, and the surgeon has only done 10 people total - he was the first one to ever do this type of surgery/device. 😱 she has surgery scheduled for July 20th. It will come with a lot of restrictions, but should decrease seizures by 70%. Currently Victoria has an average of 300 seizures a month!!! Which means she has 3,600 a year. That’s just an average, if she has 10 a day which there are days that she can have 20 or more. We have faith that God will protect her and is guiding us in the right direction.

Long story but that’s just a small sum of everything we have been through in the last 5 years.

We will update along the way. Thank you for taking time to read! We appreciate every one of you!