As drug after drug failed, Ettinger's mind turned to surgery. He had referred Gayle to his colleague Mehta, who first saw her in the fall of 2006, before her stay in the epilepsy monitoring unit. By the time they figured out what was causing Gayle's seizures, Mehta had to confront Gayle with some bad news: The only way to stop the seizures was to remove all of the brain cells that acted up during her episodes.
Gayle panicked. They were literally going to scoop out part of her brain. "When you hear brain surgery, you figure you're going to come out handicapped," recalls Gayle, who thought the procedure might leave her mentally retarded. "I told Dr. Mehta, 'I am not going to do it.'"
She returned to her native Canada in the summer of 2007—that's when the music on the stoops of Queens is the loudest, she says—to weigh her options. She considered just continuing to live with the seizures. But, for months she'd been homebound, trying to live music-free, a lifestyle that caused her to become depressed. "I was just fed up," she says. "I'm living this life and it's not the way I want to live."
She called Mehta and told him she'd have the surgery—which only four people with musicogenic epilepsy had ever had before.
Weeks after her first turn in the seizure monitoring unit, the doctors brought her back to find out where her seizures might be starting. They wanted to scan her brain while she convulsed. She put on "Temperature." Within five seconds, she recalls, she had a great big seizure.
Mehta and his team found the overexcited brain cells in the lower section of the brain behind her right ear—perhaps not surprising, because that's the part of the brain that figures out what to do with sounds. The hyperactive cells were also in areas of the brain involved in emotions and memories of particular experiences.
Because of where the cells causing the seizures were, Mehta needed to make sure that cutting them out wouldn't leave Gayle unable to understand conversations, speak or remember key events. He sent her to a neuropsychologist, who put various parts of her brain to sleep and then gave her a battery of speech and memory tests. The areas that would be left after the surgery could compensate for those Mehta would be cutting out.
In late September Gayle went under the knife for the first of two operations. During the procedure, Mehta and his team put hundreds of electrodes deep into the areas of her brain involved in her seizures. They took her back to the epilepsy monitoring unit so he could map specific parts of her brain and make the most precise cuts possible. She stayed there for four or five days without her medications and without any abnormal brain activity. The scientists finally gave her back her iPod, and as she slept she had a seizure. While she convulsed, the electrodes picked up the activity of specific cells in her brain.
She was ready for the second operation. In early October Mehta removed a small egg's worth of her brain—almost 2.5 inches ( six centimeters) long.
Since then, Gayle has been seizure-free. Mehta says she's had no mental side effects from the surgery. She has returned to her church choir. In January she enrolled at York College/C.U.N.Y. in Queens, where she is studying to be a math teacher and no longer fears the ring of a classmate's cell phone. And she is free to listen to whatever she chooses—even Sean Paul.
"Trust me," she says, "music is everywhere—I never realized that until I started getting seizures."
See what we're tweeting about
10 Comments
Add Commentvery interesting...
Reply | Report Abuse | Link to thisI've read about this before. It's an intriguing phenomena. Though, nothing I've (nor anyone I know personally has) experienced it before. Personally, I've found music to be therapeutic, and in some cases, inspiring. Paradoxically, I've found (music) to be both soothing as well as energizing, depending on the type of music. It's quite often been a source of irritation for me as well, particularly the loud, obnoxious music found in television commercials, and of course genre's of music that I personally detest (i.e. mainstream rap and pop music).
Reply | Report Abuse | Link to thisClearly the patient was aware of which particular tunes were associated with her problem, in which case "Musicophobia" sounds correct but "Your Favorite Song Gives You Seizures" does not.
Reply | Report Abuse | Link to thisNow what if she has another seizure? Or is that now improbable due to the focal area having been removed or neutralized?
If there had been no surgery, but all the sources of the offending music were removed, what would have happened then?
This sort of treatment seems drastic, rather like the lobotomy craze before the introduction of major tranquilizers. If this was epilepsy with an easily located focal point, it is rather difficult to show that particular recorded pieces of music caused the epilepsy.
It would be dismaying to see others come up and volunteer for similar treatments, claiming other recorded entertainment to be the cause of seizures.
Did anyone try to decompose the offending music and test by features to see if there was any particular feature of the music, or combinations of features which were equally associated with seizures?
And finally, were any other therapies considered besides antiseizure medication and/or surgery?
--
Edited by Bradley at 06/09/2008 8:59 PM
I was a musicogenic I am English and for years I could not listen to a guitar riff. Growing up in the seventies the era of the riff meant all my favourite music was robbed from me
Reply | Report Abuse | Link to thisSo from the age of 17 till the age of 38 I lived in dread of a car radio, piped supermarket music oh the horrors, the neverending nightmare of convulsing in public. Then by a chance meeting I was sent to see a neuro from one of our major hospitals called Kings college London they wired me up played the music Thin Lizzies Emerald and bingo result three startled neuros and one professor chasing me around the hospital as I went AWOL. Well I had EEG telemetry scans and surgery two thumbsworth of scar tissue I was told And what do I do my housework to Thin Lizzy's Emerald wonderful stuff but in all seriousness not one neurologist believed me. That's why I am glad someone else has been operated on and cured its like being released from prison.
I love your naive comments bradley you sound so knowledgable (not) I think this may be my umpteenth post on this comment I apologise for duplicate posts. I could not listen to a guitar riff without convulsing in public. I was operated on At kings college Londontwo thumbsworth of scar tissue were removed from my brain. Do you know bradley the humiliation and lack of self control that epilepsy causes the tormen of having to avoid car radio's and piped music that is everywhere? Not to mention the stigma of epilepsy. In which case 'musicophobia sounds correct' Go and study some neuro science dear thst is if you've got two brain cells to rub together.. Sorry for being harsh but you have no idea of what it is to be a music o genic its like living in a prison.
Reply | Report Abuse | Link to thisI am so sorry bradley i fired off without thinking first we have had a lobectomy not a lobotomy I suspect that this lady had right temporal epilepsy then there are eeg's telemetry and Mri and memory and psychological tests to be undertaken. This surgery is not to be undertaken lightly. But as my hospital is one of the oldest and most respected uni/hospitals in England I knew I was in safe hands. And this is England when I say I old I mean old its a large rambling place thank goodness the equipment is magnificent and of course so are the surgeons and professers but please don't confuse a lobotomy with a lobectomy
Reply | Report Abuse | Link to thisI’ve been reacting negatively to ‘bad’ music in the past couple months, literally fleeing concerts in a panic, fingers in my ears, hunching over trying to block the sound if the treble is too high, or louder than the bass or mids. If the music isn’t ‘equal’ with all parts in line running smooth thru my body in a rhythm it’s unbearable. I have to sit in my car and listen to ‘good’ music to ’smooth’ me out. It’s a drug when it’s good. I can’t turn it off. I am literally trapped in my car, unable to turn it off. I have done laps around my neighborhood, slowly lowing the music until I reach the final conclusion that I HAVE to turn it off. In the past week I started to notice I could NOT keep my eyes open when the sound was good. My head goes back, eyes shut, I’m sure I look like I’m tripping on acid or something. It started happening while driving last night. Now my good music is controlling me. I pulled over, couldn’t stop listening, then I noticed my body tightening, my temples to between by eyebrows straight to the entire top of my brain was in a rolling turmoil not sure whether to enjoy or fight the feeling. It was like a musical orgasm..then I had a seizure. Not my normal partial complex, I was aware, but locked up turned sideways in my car. I figured out that my entire body was trying to ‘balance’ the music because my left front speaker wasn’t working. Muscles under my ear tightened trying block the sound, leaving only the right side to interpret what it was hearing. I reached in desperation for the radio, still undecided whether to enjoy this smooth rolling rush overcoming me, or stop this seizure. I was totally exhausted after and noticed I couldn’t be in a room with lights. I slept with an eye mask in silence. Normally I listen to music. I enjoy any genre of music as long as it’s perfect sound, rhythm, no drops, singer can sing, bass there to balance the treble. I’ve always said a good song has to be felt from the groin to the top of my chest, each area feeling the different parts..bass, mids, treble.. I’m weird I know. I go to 50 concerts a year because music is my drug that fixes me and I’ve found only musicians understand some of what I’m saying.
Reply | Report Abuse | Link to thisMy daughter has musicogenic seizures. She will seize, many due to rythyms in the 15 to 17 cycles, like the strobe lights. Her triggers are music that starts beating in that range, lots of rap and hard rock, the high school marching song [from a quarter of a mile away--I could barely hear it when I turned the car off to take care of the seizure]; people talking together in a crowd; commercial ice makers and air conditioners; and old dot matrix printers printing letters, but not financial forms. She also has audiogenic seizures triggered by loud, obnoxious noises, including the swish, swish heart beat sound of a fetus when turned up on the monitor. We can't always avoid seizures, but can sometimes react by leaving when one happens due to noise, or turning off the song on the radio.a
Reply | Report Abuse | Link to thisI had/have musicogenic epilepsy. I had a grown man's thumb size worth of scar tissue resected from the medial temporal lobe in an awake surgery. I elected amnesia meds and have not yet ordered the video. Removed the right amygdala entirely. Hmm.
Reply | Report Abuse | Link to thisIncidentally and nonintentionally in my case, that cures PTSD to a significant degree by removing large chunk of emotion patterning. Rather startling initially, to familiarize memory-self with new post-surgery self emotion habits. Post-surgery was easily able to emotionally sever and divorce an abusive relationship, the emo/PTSD element wasn't there anymore. Was a different person. Bye bye you're a jerk.
I had multiple triggers, music was one. Didn't listen to music for many years. Had to work nights for quiet, avoid all malls, movies, even busy city streets made me ill, and enclosed spaces with echoing sound.
Grocery stores and department stores were a challenge. Echoing sound and especially the sound of many people's voices in conversation echoing in an enclosed space, any good music I would begin to rhapsodize with, and miscellaneous. Rhapsody/appreciation was one trigger point for me, and that comes with music/conversation. Emotions are compulsive to the point of wrinding the flesh/mind. Removal of damaged/scarred amygdala changed my personality/emotions.
I'm based in the UK and have been recently diagnosed with musicogenic epilepsy. I had a controlled test (connected to various machines) where they played a specific record that triggers a seizure (in my case it was 10cc - I'm not in love). The doctors didnt expect to see what happened once the music started playing! The reports show activity in the frontal lobe. Waiting to go for more scans and tests now, needless to say they are very interested in my condition.
Reply | Report Abuse | Link to this