Tammey’s Story

By October 11, 2017Patient, Written Stories

Hello! My name is Tammey and I am a Registered Nurse Educator, wife, and mother.

On October 07, 2007 at 4AM, my life as I knew it changed forever. My husband awoke to me experiencing a very severe Grand Mal seizure. It was to be the first of many. Emergency responders worked on me for over 45 minutes before I was stable enough for transport. They told me later that I came very close to dying. It scared my family very badly since I had never had a seizure.

The next day a neurologist told me that I had Adult Onset Epilepsy and turned my world upside down. I was at the height of my career. My children were almost grown. I had a life! I went to a very dark place after that.

After another major Grand Mal seizure while driving, I totaled my beloved barbie car and I was almost killed. I was unable to enjoy the career that I loved. I couldn’t drive. I couldn’t swim alone in my pool. I was told not to cook alone. I spiraled downward with every previously simple pleasure that I was told not to do at all or without someone close.

Miss Independent had to become dependent. With every seizure and antiseizure medication, my life spiraled further downward. I became a hermit. I avoided social situations from fear of having a seizure in public.

The anti-seizure medication side effects were as bad as the seizures to me. I lived in a dark fog. I had trouble finding words and forming complete sentences. I couldn’t read a page of a book without forgetting what I had just read. One of the anti-seizure medications caused a severe allergic reaction- Steven Johnson Syndrome- and put me in the hospital for a week. I couldn’t add a tip on a receipt because I lost the ability to work with numbers. I didn’t have typical auras so I never knew when I was about to have a seizure. I had both very severe Grand Mal as well as absence seizures. They would come out of nowhere. I lived in total fear.

I sustained both short and long term memory loss as well as some brain damage from the Epilepsy and seizures. I was devastated. I was scared. They told me that I had the type of seizures that people die from. My biggest fear was that I would die from a seizure before I could see my beautiful daughter walk down the aisle. I missed being around people but was just too ashamed of my condition to be around anyone. The person that my friends called Sparkles retreated farther and farther into that dark hole. My smile went away because Epilepsy is such a devastating condition.

After a neurologist determined that I had Medication Resistant Epilepsy and uncontrolled seizures, I was referred to the Neurologist who will forever more be my Rock Star – Dr. William Tatum at Mayo Clinic in Jacksonville. I tell everyone that he and the NeuroPace RNS System saved my life!

At the first evaluation, my doctor said that he believed my seizures were coming from my left Hippocampus region. He suggested the RNS System to me because of the great results they were having with the RNS. It was a new seizure treatment and many people thought that I should wait. I was determined to get my life back and fearful of waiting. There was a cosmic clock ticking away somewhere.

After the first WADA and Functional MRI, my neurologist found that my memory and language centers were localized to the left side in the temporal lobe. Subsequently, it was determined that in addition to having Intractable Epilepsy with recurrent focal seizures with and without impaired consciousness; I also had focal seizures evolving to convulsions. The seizures were lateralized to the left mesial temporal region. The hospital initially turned me down to start with for RNS placement because of this, but my Dr. Rock Star didn’t give up since the RNS was the only feasible option left to me and he agreed that I had seizures that he believed we could minimize with the RNS. We were both very optimistic!

I had another WADA with the same results. Removing the seizure area with ablation would likely hurt my memory or language and could possibly have worse implications. He sent me to Alabama for a MEG study which backed up the WADA findings and was consistent with interior mesial temporal lobe seizure localization. Dr. Tatum kept fighting for me until the hospital agreed to the RNS surgery for me. The day he called and told me to get ready for surgery is still one of the greatest days of my life.

It seems simple, but one of my biggest worries with the RNS System was that my head would be completely shaved, but my neurosurgeon just used a comb and took his time separating the hair.

On May 21, 2015 I received my NeuroPace RNS with 2 leads and I got my life back.

I was in the hospital for a few days and then went home to recover with home health care. I was sore, tired, and confused for a couple of weeks, but moving into one of my guest rooms alone was a great idea.

My RNS has changed my life. The perpetual smile and laugh is back. My seizures have decreased in number and severity. I’ve only had one Grand Mal seizure since the implant and many smaller seizure episodes have been stopped. I have a life again!

I’m not scared to go out around other people anymore because thanks to my NeuroPace Dream Team, I’m learning what my auras are as well as my triggers. I feel safe because my RNS is always watching my brainwaves. I’ve gotten my independence back, I’m working on restarting my bucket list, and I have my self-confidence back. I ride Uber to go shopping alone! I fly alone! I fly to Jacksonville every 3 months for my checkups alone – very, very happily!

Thanks to my RNS and my newfound freedom, I finally got the one thing that I begged God to let me do – I flew to St. Lucia in December to see my gorgeous daughter walk down the aisle and get married. I didn’t think it was possible but it happened thanks to the RNS System, I have my life back and I saw my baby girl get married.

Thanks to my RNS, I have started a new chapter in my life. My life has purpose again because as a RNS Ambassador I can share my story and educate others on the many benefits of the RNS. Those with seizures don’t have to feel alone in their journey because a RNS Ambassador is always there. I can calm fears by listening and sharing. I can reassure and uplift those looking for options. I can try to help others from going to that dark place that I went to.

I’m looking forward to hopefully becoming a Grandma before long as well as traveling to beautiful, exiting places that I’ve never been and thought were lost to me forever. Thanks to my RNS, I’m making up from being a hermit and I talk to everybody now!

The wings have been opened again on this Social Butterfly and I’m ready to fly and sparkle again!

Have questions, or want to know more?

This represents the experience of individual(s) who have used the RNS System.  Individual results will vary.