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We scurried like mice across the street under the cover of darkness, hugging the side of the St. Mary building when we reached it to block the wind as it gusted at 22 below zero. The light from the entrance door called like a beacon, and when we reached it all I could do was give thanks. I stomped the snow off my boots and pushed back the hood of my coat, looking around for some Kleenex. My mom and dad followed behind me as I walked to the check in desk. Five am. One hour til surgery.
We were directed to a waiting room filled with patterned chairs and nervous faces. Dad checked his email, mom knitted, I wrote, all three trying to pretend we weren’t scared. All too soon, someone in blue scrubs called my name.
I was diagnosed with simple partial epilepsy when I was seven years old. For eighteen years I switched from medication to medication, none working, all leaving me sick with double vision and headaches, walking in zig zag patterns and downing coffee and Red Bulls as I tried desperately not to fall asleep at my desk. For most of my life I was able to ignore it, my stubborn nature allowing me to push forward, but in the past couple years, it started to get worse. When my epilepsy started to affect my professional life, I knew I had to do something. At twenty five, I had a long way left to live and I didn’t want to live it like that.
When I decided to have brain surgery, I knew immediately that I would go to the Mayo Clinic; it’s the best, and if I was going to have brain surgery, I was going to do it at the best possible hospital. I went in for testing and monitoring the day after Thanksgiving. I was told to bring a toothbrush and something to keep me entertained for a few days, but it took less than 24 hours to produce five juicy, readable seizures for the 76 electrodes glued to my head. When the neurologist came in to tell me I could go, he said that if I proceeded, there would be two surgeries with intracranial monitoring between. Two surgeries? I remember thinking. He explained that the EEG couldn’t pinpoint exactly enough where my seizures originated, so they would take off a portion of my skull, place a grid of electrodes onto the surface of my brain, then reduce my medications to induce seizures for a few days in hopes that they could find the origin point. Still, even if they could find it, he warned, it might not be operable. He asked if I still wanted to do it. I said yes.
January 20th was the day of my first surgery. January 24th was my second. My memories of the days in between come to me in foggy vignettes, but I do remember the doctors who kept me informed, the nurse who massaged my sore back in the middle of the night and the EEG tech who held my hand as I fell asleep on the operating table. I remember the Ethiopian woman who told us about her home as she changed the sheets on my bed, me watching her smiling mouth move as I practiced sitting in a chair and eating on my own. It’s been over nine months since that plastic mask was lowered onto my face for the second time, and I’ve been seizure free since. Not a day goes by that I don’t think of it, that I don’t reach up and trace the scar that runs in an arc across my head, that I don’t feel eternally grateful.
Written and submitted by: Erica Egge
My Dad had the same thing done over 4 years ago and he is seizure free still!! He did have major depression at about a year out but that is improving now too. He had epilepsy since he was an infant related to high fevers they think and he was untreated until he got out of high school. Hopefully this surgery can stop lots of suffering and worry. Take care!
Your story hits very close to home considering that I had a right temporal lobectomy Dec. 6, 1994 at Scripps Green Hospital in La Jolla, Calif, and remember ever step of the way as we headed through the hospital doors and into the operating room. The journey was certainly life-changing for me, too, considering that I had four seizures the day before the surgery (the last was while standing in front of Scripps) and I haven’t had another since after dealing with epilepsy dating back to the mid-1950s. Like you, I had also grown tired of dealing with the seizures and the medications — none of them worked for me — and the surgery undoubtedly changed my entire life. Take care and keep the faith!
this made me cry a bit my 8 year old is going thru seizures that have not been controlled and they have mentioned surgey and just the thought is so scary but your story made me see that this may just be the right thing to do!
I’m glad I can be of help! Kids are especially resilient – I followed a two year old boy who had the same surgery as me, but while I couldn’t sit up or even lift a spoon, he was crawling around on the floor playing! Good luck and blessings to you and your daughter.
Erica
Im glad the surgeries had gone well for some of you. I work one on one with a little boy who has grand mall seizures and its hard for the family and the child. I wish you all the luck.
Hi,
I am Shashank Tiwari and this is my 1st visit on this site , I found it is very useful and informative. It has very nice information regarding Epilepsy, Brain Surgery. I am glad to visit here and will visit again. All the best
Thank you all so much for your support. It certainly feels like I’ve been given a new lease on life. I’m glad the surgery worked for those who’ve had it and I suggest taking a look at it for those who haven’t.
I am glad people have had a success with Mayo-Clinic. I grew up with a brother who went there about twenty years ago. He didn’t have a success with Mayo-Clinic and passed away after the brain surgery.
I never had epilepsy until he did pass away. I have been on all kinds of drugs and a VNS monitor. None of it has ever worked. I finally had my brain surgery November 20th, 2011 at the UNMC hospital in Omaha, NE and it has worked great.
To this date no seizures it has been a short time. I hope it keeps going that way for me since I went to UNMC.
My husband, age 55, had surgeries for seizures at another hospital. He had the first surgery to place the electrodes that would record seizures, and the second surgery – a partial left-temporal lobectomy – one week later. I’d done as much research as I could in the 6 weeks leading up to the surgeries (Oct. 2012), but looking back, it was not nearly enough. This is truly a profound experience, both for the patient and for his or her family. The hospital we went to clearly did not prepare us. Additionally, there were unacceptable inconsistancies with the ICU nursing staff. Nurses are human, but there should be less room for error when dealing with surgeries of this magnitude. Also, I believe it would have helped immensely if we’d had some sort of preparation for the surgeries other than the medical steps being outlined. Lesson learned: interview 2+ hospitals before you let them cut into your loved one or yourself.
I agree. I am on my way to an appointment with a doctor at the 4th hospital regarding having epilepsy surgery.
This one is the only hospital that does laser surgery. I want to see if I am a candidate for that type of surgery to remove the right temporal lobe.
Prayers needed and appreciated. This is a big decision.