Epilepsy is a b*tch
This week I am joined by Torie Robinson, a young woman whose life has been affected by her neurologic disease. She was gracious enough to share her story on the podcast, and it is an incredible tale. Importantly, it illustrates the exhaustion endured by a patient who has been forced to deal with all the psychosocial consequences of an incurable disease. And it’s not a rare condition. Almost 1 in 100 people suffer from it.
And despite how common this condition is, it’s remarkably stigmatizing. Epileptic patients are 7 times more likely to feel judged or discriminated against compared to other people their age. To hear Torie describe her experience with this condition, to learn about how she has coped with it, the treatments she has experimented with, and the brain surgery involved, take a listen to this week’s episode. For the blog, we’ll focus on more of the medical aspects of treating a patient with her type of epilepsy.
Technically, Torie is a 36-year-old female with a medical history of drug-resistant localization-related epilepsy since
age 10 who returns with recurrent seizures despite therapeutic anti-epileptic drug levels, an unremarkable brain MRI…” So there is no clear reason she has seizures: no structural abnormality of her brain, no family history of an underlying genetic predisposition to seizures, and no personal history of brain injury. She’s been treated with valproic acid among a half dozen other anti-epileptic drugs (AEDs) without much benefit. For a long time, she was on several AEDs at once–which can cause drug-drug interactions, increase her risk of sedation and confusion, and organ dysfunction. (Yes, she has given us permission to disclose her medical history for this episode.) But it turns out that if one AED does not control your seizures, the odds are not good that you’ll achieve seizure freedom. In fact, there is only a 13% chance that a second drug will control your seizures. And after 2 drugs, adding a third will only give you a 1% chance of seizure freedom. So, probably not much bang for your buck at this point. Here are some other numbers on risk of seizure recurrence:
- Single seizure: 34 – 71% over 2 years
- Single seizure with no risk factors, a normal EEG, and normal MRI (Torie’s original risk): ~ 20%
- Abnormal EEG (epileptiform): ~ 60-70%
- Abnormal imaging (structural lesion): ~ 60-70%
- Two lifetime seizures: ~ 70%
If the patient is having trouble controlling seizures despite 2 or more AEDs, that is when many epileptologists consider alternative therapies like a vagal nerve stimulator, ketogenic diet, or brain surgery. Many of these treatment modalities are highly effective, although they are not without risk. But it took almost twenty years before a neurologist thought to offer any of these treatments to Torie.
For those of you who are thinking, surgery? Brain surgery for epilepsy? Well, yeah actually. Not only is brain surgery an excellent option for many epileptic patients who have surgically accessible cortical lesions, but it turns out patients with temporal lobe epilepsy—patients like Torie—do really well if most of the temporal lobe is resected. In the
landmark trial by Weibe and colleagues in 2001, patients with localization-related epilepsy affecting the temporal lobes had a significantly lower rate of seizure recurrence and were much less likely to require anti-epileptic drug therapy if these patients underwent temporal lobectomy. 1 year post-operatively, nearly 60% of patients in the surgical arm had any recurrent seizures that affected their consciousness. In contrast, only 8% of patients in the medical arm did this well. Obviously, this had dramatic consequences for quality of life. And since this trial, we know patients amenable to this type of procedure are happier, feel less anxiety, and they’re more likely to get back to the things they hadn’t been able to do before.
That being said, surgery referral rates for refractory epilepsy have not changed in recent years. And why is that? Perhaps most surprising is that 90% of neurologists have reported that they know the indications for epilepsy surgery, and yet fewer than 2% of patients who could benefit from epilepsy surgery actually get the surgery. 2%! That’s like seeing 50 patients with severe migraines and saying, “well, I guess we’re only going to treat 1 of you today.” So how can we fix this? Well…Torie had some ideas.
Torie works with Epilepsy Action, which is the largest epilepsy charity in the UK, and together they have worked to raise awareness about epilepsy and support research and reduce discrimination among patients with epilepsy. Just last year she received the Media Volunteer of the Year Award for her contributions. And she’s out there simply spreading the word. Which is exactly what we are doing in this week’s episode. You can follow her new blog here for more information.
We are immensely grateful for Torie Robinson to have shared her life story with us. As always, BrainWaves audio and online content are intended for medical education only. Please don’t go around doing brain surgery willy nilly for patients with epilepsy.
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