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Jeanny's Story

Jeanny
quote from Jeanny

This is a transcript of a video from the Growing Up with Epilepsy Web site. For more information visit http://www2.massgeneral.org/childhoodepilepsy.

Jeanny: My name is Jeanny, and I'm 18 years old. All my family are from Dominican Republic. For me, my family is really important, because we share together. I run every morning in the park with my father. My family really has a lot of patience and they really take care of me.

Jeannette: Her first seizure was when she was four month. She was a baby.

Jeanny: I still have seizures. I don't really move, but I shake my arms a lot.

Jeannette: The first years was less strong, but now it's worse.

Elizabeth Thiele: I first met Jeanny when she was a adolescent. And she had had onset of seizures during infancy and had been treated with several different medications.

Jeanny: Right now for treatments I use two medications. It doesn't really control my seizures.

Jeannette: This is very frustrating for me, because for a long time I'm waiting for some treatment that control the seizures, but nothing worked.

Thiele: In Jeanny's case, she is graduated from high school and is going off to college. And that is a very stressful time for the parents and the child with epilepsy.

Jeanny: I want to work. I want to drive. I really want to go to college, you know, and I really want to become a pediatric nurse. I would feel really excited if I won't have any seizures, so I can do everything that I have to do and accomplish for my career.

Thiele: When she had an MRI scan in early adolescence, it showed that she had an abnormality in a part of her brain, the left temporal lobe. Given the fact that she does have this abnormality on MRI, that her seizures have been difficult to control, and that her seizures are really impacting her quality of life, after talking with Jeanny and her parents, we decided it was important to see if epilepsy surgery would be a possible option to better control her seizures.

Emad Eskandar: Welcome back.

Jeanny: Yes.

Eskandar: Good to see you again.

Jeanny: Good to see you.

Jeanny: I kind of feel a little bit nervous, but I really want this surgery.

Eskandar: Okay, how are the seizures coming along? And how frequently do you have 'em in general?

Jeanny: Um, three seizures a month.

Eskandar: Three a month--it's a big problem.

Jeanny: Yes.

Eskandar: Can you drive?

Jeanny: I know how to drive, but I can't.

Eskandar: You can't drive, right, because you have the seizures.

Jeanny: Yes.

Eskandar: She's a good candidate for seizure surgery because she's young and healthy and doesn't have much in the way of other medical problems. She has fairly stereotyped seizures. That is, she just has one type of seizure and it's the same one over and over again. So that's a good sign. And we have identified an abnormality on her MRI that's likely causing the seizures.

Eskandar: You can see what are called the gyri, these parts of the brain here.

Jeanny: Yes.

Eskandar: And you can seethe white matter underneath. And if you look on this side, you see you don't have that same pattern at all. You know, you don't have all these curves here. It just looks kinda even. And that's not normal. So you don't have this same nice pattern here. Based on all the data we have from the EEG and from the other studies, we think this is what's giving rise to the seizures, okay? So, our goal during the surgery is going to be to remove this abnormal area.

Eskandar: It's in a part of the brain where we think we can safely remove it without really causing her any significant neurologic harm.

Eskandar: So, that's basically... as I told you before, the surgery itself will take about four hours. We'll just do it through a kind of a linear incision. We'll put it behind your hairline so that when your hair grows back, you won't be able to see it. We'll use an intraoperative workstation, basically a computerized guidance system, to help us ensure that we're exactly in the right place. Then we'll remove the abnormal area. We'll send it to the pathology lab. We'll close everything back up. Hopefully, and probably most important for you is, we think that this will control your seizures. And the available data suggests that there's about a 70 to 80% chance of your being free of seizures after the surgery. It's not 100%, but it's a pretty good rate.

Jeanny: After the surgery, it will, it will... will it affect me?

Eskandar: Most likely you're really not going to have any serious side effects. Your thinking, your speech, your memory will be essentially the same as they are now.

Jeanny: Oh, okay.

Eskandar: And that once you're recovered from the acute effects, you're basically going to be back to normal, except, hopefully, without the seizures.

Jeanny: I hope so.

Eskandar: Yeah, good.

Eskandar: I think she's going to do very well. In general, the feeling is that in well-localized temporal lobe epilepsies of this type, there's about a 70% to 80% rate of either curing the seizures or having a very significant reduction in seizure frequency. And that's what we expect for her.

Jeanny: All right, then.

Eskandar: Great.

Jeanny: Thank you.

Eskandar: Okay, I will see you the morning of surgery. And you're going to do great.

Jeanny: Thank you.

Eskandar: All right, good seeing you again.

Jeannette: Thank you, Dr. Eskandar.

Eskandar: Good seeing you. Take care.

Jeanny: The rest of my life I won't have any seizures, so that will be really exciting for me.

Jeannette: I wish that you got good grade in college.

Jeanny: I used to tell her every day that I really want to do the surgery, because I want to stop having seizures, so they won't be that worried and taking care of me, like, all the time.

Jeannette: That's a blessing for your daddy, for me, for all family.

Jeannette: I want a beautiful future for her. I want that she got every goal that she was dreaming when she was a baby, when she was a child.

Jeanny: I will have my own car. My own job.

Jeannette: Job... car... It's a new life.

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