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Temporal Lobectomy and continued seizures
Sat, 09/26/2015 - 21:46
I have had seizures since I was 13 and didn't know that's what they were and thought it was something weird I did. It was a dejavue, gastric rising and loss of awareness events. I had my first convulsive seizure at 24. I was diagnosed with partial complex seizures when I was 26 ( at Cleveland Clinic ) It took a long time to get a definitive diagnosis because I was actually born with the brain tissue causing the seizures and deeper in the brain so it did not show up on a normal EEG or MRI.
My dr decided to send me to a more equipped hospital that could help. I felt like no one believed me and was dismissed as if I was making it up at my home hospital. When I was sent to Cleveland Clinic it took one EEG to see where the seizures were coming from, my right temporal lobe. They preceded to do an SEEG in which they put the electrodes in the brain to get an even better location. About 6 weeks later they resected a portion of the temporal lobe, hippocampus and amigdalla to stop the seizures. It has now been almost 3 months after surgery and I am still experiencing seizures. I am desperate to hear someone's story. Am I alone in this experience? Did I do some thing? It's starting to feel like I must have done something to deserve this.
Did it take a while to see a difference and the seizures to stop for anyone else. They now want me to stay at the epilepsy monitoring unit again and I'm afraid I'm starting all over.
Can anyone share there story. I'm afraid to go back to no one believing me because before it was too deep and they don't see it. Can some seizure contributing tissue be missed during the resection? I'm so scared and feel like I'm starting over. I'm afraid of depression setting in and losing hope, losing my job. Am I going to do this forever.
Like I said is anyone willing to tell me there story, has this happened to anyone else were it took a while for the surgery to work or did they need another surgery. My surgeon won't answer my questions and don't know what to do. Any help I can get would be greatly appreciated