If he only had a brain...
August 14, 2013 7:14 AM   Subscribe

My husband has epilepsy which has unfortunately proven difficult to treat with anti-epileptic medications. We met with his neurologist yesterday, who suggested that the accepted protocol nowadays is to start pursuing the option of brain surgery early rather than as a much later, last resort. This is scary stuff, complicated by the fact that we have a baby on the way and that the epilepsy is not so serious that it's a rush/emergency situation. What should we be thinking about as we proceed? (Apologies in advance for this getting long.)

As a quick background: he has been experiencing seizures for at least 4 years (best guess -- that's my first record of him complaining about it), but was only diagnosed last year after an unobserved loss of consciousness where he fell and hit his head at work (which we later determined was probably a tonic clonic seizure) and then an observed tonic clonic which confirmed the suspicion. He typically has partial seizures, both simple and complex; once he was put onto AEDs, the tonic clonics were completely controlled. Unfortunately, we have been through 3 different drugs (lamotrigine, levetiracetam, and zonisamide) without any real reduction in the frequency of his other seizures. The lamotrigine produced no change (he started out having maybe 2-4 a day for 2-3 days with 2 week gaps in between); the levetiracetam unfortunately increased the frequency drastically (up to 7-10 seizures a day); and the zonisamide has had a small effect in reducing the frequency (he's now having about 3-5 every day).

The process leading up to epilepsy surgery is a fairly long one, we know, involving lots of tests. At the moment, based on the tests/scans he's already had, they suspect that the seizure activity is originating in the hippocampus, based on a scar or lesion that's present in that area, but they're not 100% sure that the activity is completely localised to that area. His neuro isn't being pushy about what we should do; the effect of the latest drug is a positive change for us, and while he thinks having the pre-surgery test assessment is a good idea, I think he's also very open to tinkering with the drugs a bit more to see if we can solve things with that tool.

I'm feeling really torn. On the one hand, the last couple of years has been absolutely hellish for both of us, but especially my husband. Both the seizures and the drugs have affected his abilities at work, his memory, energy, confidence and mood, and produced a real shift in our relationship. I saw a therapist earlier this year for about 3 months to try and help me cope with what felt like a permanent, depressing change in him and in our interactions together. I suspect that he was experiencing depression himself, although he didn't feel comfortable speaking to anyone else about his mood. And while we're both incredibly excited about a baby coming along soon, I have plenty of worries about what even a basic thing like lack of sleep is going to do to his seizure frequency.

On the other hand, as I said, we have recently seen a positive reduction in seizure frequency, and he's told me that he's felt much better emotionally the last couple of months. Whereas there were moments of real darkness before, we've not had those "god this feels neverending and hopeless" heartbreaking discussions about his disorder for a good while. But he's not fixed, and from our conversations with the neurologist, there's very little chance that he could become 100% seizure free with the medications in a quick period of time (ie. he sketched out a possibly decades-long future filled with drug experimentation and tinkering, more of what we've already been doing for the past year and a half, possibly without end).

My husband doesn't like the idea of brain surgery at all, although he has said he's open to having whatever tests done that the doctor thinks necessary. We've talked about what he could be happy living with as far as seizure frequency, and he seems to think he'd be ok not being seizure free, but wants it to be much lower than it is now. While the small amount of research into epilepsy surgery that I've already done is not overly frightening (and is actually quite heartening), the fact that they'll be futzing around with the temporal lobe, specifically the hippocampus, with their attendant language and memory functions... I dunno, it's difficult not to let my fears carry me away. Logically, I understand that brain surgeons are not weekend diy car mechanics, and that the purpose of all the tests is not only to establish exactly where they need to be cutting, but also just to establish if it's a simple enough job to undertake at all. But I think he and I both have a visceral aversion to the idea of elective brain surgery right now. I also have reservations about what recuperating from brain surgery + a young child will be like. We're in wait-and-see mode at the moment, but there is a real chance that the drugs will not get him to the place he wants to be WRT seizure frequency, so at some point, we're going to have to really sit down and figure out if the surgery is something we're comfortable with.

I can't imagine there's many (any?) mefites who have experience with surgery to treat epilepsy, but perhaps some of you have insight into brain surgery in a general sense, or experience with a problem that could have been solved relatively quickly with an elective surgical procedure with high stakes but also might've been solved with a long slog through drug options. It's not an overly urgent problem, as noted, but I'm struggling to think about it without getting teary, so I know that I'm probably missing logical things and/or not framing it dispassionately enough. Any literature or resources that you might have found particular helpful, whether about brain surgery, or about choosing to have brain surgery, or general insight? What might make or break this decision for you? Sorry to be vague, but you know, it's scary and I need a little bit of hand holding, maybe? TIA, y'all.
posted by catch as catch can to Health & Fitness (14 answers total) 4 users marked this as a favorite
I would be most concerned about comparing the risks of surgery vs. the risks of a seizure causing serious injury due to a bad fall, car accident, etc. I don't know which risk is higher in your situation, but your doctor will.

Brain surgery is a very scary thing - but so are seizures that don't respond to medication.
posted by randomnity at 7:26 AM on August 14, 2013

randomnity: I would be most concerned about comparing the risks of surgery vs. the risks of a seizure causing serious injury due to a bad fall, car accident, etc.

Yeah, this sort of analysis is what turned me around when my wife was considering serious bariatric surgery several years back. Surgical intervention seems very risky compared to doing nothing, but that is because you are greatly discounting the already present risks in the status quo because you are already dealing with them on a day-to-day basis. I don't know enough about epilepsy or this kind of surgery to help you analyze those risks, but you might try to go to his doctors with the approach of "What are the risks of surgery like compared to the risks of continued drug therapy?"
posted by Rock Steady at 7:35 AM on August 14, 2013 [1 favorite]

I am in no way qualified to answer this question, but since it wasn't addressed in what you wrote, have you thought about the ramifications of the possibility that your husband will have a seizure while holding your new baby? My gut reaction is that without doing something drastic (ie surgery)to control the seizures, your husband will not really be able to be your full parenting partner. New babies are extremely fragile and most also need to be held constantly, which means a lot of standing up and holding baby. The possibility of him having a seizure while holding the baby is quite a bit scarier to me than the (much smaller, I would guess) possibility of a highly-trained and skilled brain surgeon messing up while trying to fix his seizures.
posted by rabbitrabbit at 7:36 AM on August 14, 2013 [3 favorites]

Where are you located? How many specialists have you consulted? Sometimes a fresh pair of eyes, especially from someone up-to-date on new research, can help turn things around. I suffered from horribly debilitating migraines for years, and I'd kind of accepted the status quo. Finally something snapped, and I searched for a new doctor, waited 8 months to be seen by a leading specialist, she did a thorough history and exam, tried a new medication, and my life completely changed for the better.

I'd be inclined to recommend trying to see a new doctor. They can compare notes if necessary. It doesn't have to mean you completely ditch your old doctor, nor does it mean you disagree with his treatment options -- you just want to know what else is on the table.
posted by barnone at 7:47 AM on August 14, 2013

Actually, you'd be surprised at who is on mefi; I, er, would be an epileptologist who does recommend resective epilepsy surgery to the patients who would most benefit. (IAAE, IANYE, TINMA).

So, a couple of very basic things: brain surgery is definitely a scary proposition! Not all people with epilepsy would benefit from epilepsy surgery; only a select group of people who are most likely to benefit are offered the surgery.

I know it may seem like it's so soon and you've only tried three medicines, but studies have shown that there's significantly diminishing returns with the more meds you try - the first one will work in 65% of people, the second one in another 10% of people, the third in under 5% more, and so on. The standard is that, for patients who appear to have seizures clearly coming from one portion of the brain, and even more so if they have an obvious "scar" or "lesion" in that part of the brain, you try them on two medications, and if that doesn't work, the likelihood of more medications working (and that's complete seizure freedom we're aiming for, BTW) gets miniscule, and those particular patients actually have a high chance (60-70% or more, depending on your circumstances) of becoming seizure-free after surgery. That doesn't necessarily mean seizure-free-and-off-all-medicines, but that's a big thing, and we as physicians would be withholding really powerful treatment options if we didn't suggest surgery to the right people.

It sounds, based on your description, that your husband might have what we call mesial temporal sclerosis, or scarring of the hippocampus, which is basically the slam-dunk, best-case scenario for offering epilepsy surgery if the medications don't work, with the highest chance of seizure freedom and the smallest chance of adverse cognitive effects, relatively speaking. Of course, I don't know most of the details so maybe it's neocortical, etc etc technical blabber, but if this is the case, I would seriously consider it, as it could very possibly make a big positive influence in your husband's health.

So, the things to consider: continuing having any seizures itself causes memory, attention, and learning issues over time. Adults with epilepsy, who have had epilepsy since childhood or adolescence, they often have taken a noticeable hit to their memory, attention, learning, and IQ with the years of epilepsy. When you talk to these people, they are smart, intelligent, funny people, but seizures have clearly taken a (subtle) certain something. This is not to scare you, but it's to let you think about the long term stuff, the next 20-50 years of living with epilepsy.

Other risks of epilepsy include, well, risk of falls and injuries, etc. There's also the economic impact (if your husband doesn't work from home) - states mandate that someone who has had an episode of loss of consciousness cannot drive for 3-12 months (it varies by state) since their last seizure, as I am sure you are very aware. This very much affects people who go to school or work outside of the home, or even simple stuff like needing to get groceries! People with epilepsy have to be careful while swimming, climbing, around open flames - again, it's not like they have to live their life on eggshells or never do anything again, but it does have these subtle effects. Many people with epilepsy have to go around by public transportation for that reason. Again, I am sure you have known this for the past several years, but this is thinking forward again.

Prior to epilepsy surgery, there is a lot of testing. If he really does have significant scarring of one hippocampus, that hippocampus is most probably not doing a lot. But we don't like to presume, and his seizures did begin later in life (as opposed to childhood), so we offer a number of tests, either the Wada or an fMRI. The idea is to find out whether the other hippocampus is doing most if not all the heavy lifting with regards to memory, etc, to estimate the risk of changes to memory or word-finding and so on.

Once all this testing is done, the epileptologist will meet with the radiologists, neurosurgeons, neuropsychologists, etc, and they will all discuss his case. This is so that if any one of those specialists has an objection or thinks it will cause serious harm or that they don't have enough information to go forward, they can speak up! Neuropsychologists will let us know if they think there's major risk to cognition if that part is removed, neurosurgeons will comment on whether they think it's safe from a surgical perspective, the epileptologist will comment on if they have enough electrical data, etc. It's considered from all those angles by multiple specialties, so that you don't lose sight of the forest for the trees.

There are also a couple of approaches to temporal lobe epilepsy surgery - I'm not sure which your neurosurgeon would be considering or how much of the temporal lobe is involved. In some centers, if it truly is only the hippocampus that is involved, they can kind of go under and selectively remove the diseased hippocampus, which is called an - ahem - selective amygdalohippocampectomy. If more of the temporal lobe is involved, then the entire frontal end of the temporal lobe is removed.

Your concerns are totally reasonable, and it's not something to jump into! But the details you're throwing out there, as few as they are, do make me think that your husband might actually be a good candidate. All the same, that doesn't ever mean that you have to do anything, but lifelong epilepsy is a medical condition that does cause slow and gradual injury over time; it's not isolated blips of dysfunction in the brain. Again, I don't say this to scare you, but to be truthful with you - it's just like how the healthiest person with diabetes in the world still over time accumulates subtle injury to their organs.

But it's not urgent, as you say. Take some time to think about it, focus on the baby, etc. You might get more information to help you both make the decision by going through some of the neuropsychological and fMRI testing, which is at least noninvasive. If the tests show that he'll have too much risk to his memory with the surgery, they'll tell you, and then likely not recommend the surgery unless the other factors significantly outweigh that (such as in patients who are having so many falls that they are directly injuring their brains).

A wall of words: hope this helps (TINMA, again; I don't know any details and I'm speaking in generalities.)
posted by vetala at 7:56 AM on August 14, 2013 [64 favorites]

My husband had ulcerative colitis which culminated in surgical removal of his colon last year. He made the decision for surgery last year under duress, his medications and attempted diet modifications failed to control symptoms. In a two week period my husband went to emergency 4 times before being admitted. It was a week and a half of marginal medication response before surgery. At that point he was in the washroom 20 times a day. He'd lost 30 lb and he was starving.

My husband resisted hospitalization and surgery. After all, it's just trips to the bathroom, he'll just deal, right? And when his symptoms remitted in previous episodes, when he'd feel better, he'd dial back his treatment protocols. Or he'd eat manuka honey and experiment with probiotics. This is what feeling better does and in some ways it's a curse to feel better - it tricks your mind into thinking things aren't so bad even when the illness is serious.

And for your husband, he feels better. Which is good, but he's having seizures 5 times a day! That means he must be spending his day, every day, having a seizure then recovering then wondering when the next one will come. That this is better for you reflects an extremely low baseline.

Given your description of the problem, this reprieve might be temporary. This is an excellent time to learn about surgery. Preferably you will do this by contacting support groups and finding a mentor instead of scaring yourself shitless with Google. You have time to do this research as the baby is not yet here. And it's actually a great time to operate, as you don't want to be bringing a baby to hospital for visiting.

Yes major surgery is scary. Yes it has long ranging impacts on career, work, etc. However the surgery is the shot at not having 5 seizures a day! Having a seizure every day is life destroying. I don't think you really get this. You can only really get this once your husband goes days without seizures and starts living life again without this daily fear.

We are almost one year post colon removal. My husband returned to work full time. He plays tennis, runs, and skis. The ileostomy bag is gross but he is going for another surgery to get that removed. So yes the surgical life does mean another week long hospitalization, another 12 week recovery with no income, etc. Choosing surgery this time is so much easier than trying to decide when residents and surgeons were arguing over his hospital bed on rounds when he was unresponsive to treatment. The downside to choosing was over thinking it, which delayed treatment. So it goes.

The difference in our lives now that he isn't in the can 20 times a day is immeasurable. Seek treatment that works. Your family deserves a better life and if the treatment is effective, you'll wonder why you waited so long.
posted by shock muppet at 8:19 AM on August 14, 2013 [3 favorites]

I work with epilepsy specialists and functional neurosurgeons. I was going to offer secondhand advice, but with vetala's excellent answer, I just hope I have something additional to contribute.

I think the key question is how much monitoring his docs want him to undergo before resection. If it's a slam-dunk lesion, in a functionally safe-to-resect area, it's common not to do much monitoring. The patients I see are the ones that have electrodes implanted subdurally (on the surface of the brain) and deeper (depth electrodes). The depth electrodes are the ones that "listen" to the hippocampus. If he does have these, the neurologists might want to do functional stimulation; certain types of electrical stimulation can temporarily "knock out" the function of the tissue around the electrode. They can do cognitive testing during stimulation to simulate what deficits, if any, there would be post-resection.

Unilateral hippocampectomy is a pretty common, low-deficit procedure as far as I've heard. Temporal lobectomy is a much bigger deal.

Many people believe that each seizure rewires the neuronal networks of the brain. The longer his epilepsy goes untreated, the greater chance of it spreading and becoming a much more complicated surgery down the line.
posted by supercres at 8:24 AM on August 14, 2013 [2 favorites]

vetala's answer was excellent. My son had a temporal lobe resection for his epilepsy just over a year ago at the Cleveland Clinic at age 17. Difficult decision, wish we had done it sooner. What finally pushed us to do it was his desire to go to college and live on his own.

He's been seizure free since the surgery and as best we can tell the effect on cognition was minimal if any.

Surgeon's comment was "Bad Brain, should come out!" He was right. My layman's guess is in his case the part of the brain that was the seizure origin was dysfunctional anyway and removal had little effect. As vetala points out, the fMRI testing is very useful for measuring the risks.

Three months after surgery he went off to college, did great his freshman year and is returning in a couple weeks.

One comment regarding meds. It used to be common to try and remove the anti-epilepsy drugs after surgery. Current thinking is if the drugs are well tolerated to continue using them. Factor this in to your calculation, don't count on the surgery to completely eliminate the AEDs.
posted by cosmac at 9:00 AM on August 14, 2013 [3 favorites]

If you want to MeMail me, I can put you in touch with my cousin. She had this surgery in November.
posted by mrfuga0 at 9:08 AM on August 14, 2013

You haven't tried tegretol (carbamazepine)? Been on it for decades. A life saver.
posted by Ironmouth at 9:24 AM on August 14, 2013

I can offer my perspective. My college boyfriend had epilepsy that started with absence seizures when he was quite young, but weren't diagnosed until his freshman year in college. They just thought he was spacy, or thinking, or distracted. But in college, they got worse and worse and worse, until he was endangering himself. Even on anti-seizure meds, he'd try to take an egg out of boiling water with his hands, or wander into traffic. He lost his driver's license (obviously) and various financial ramifications followed. He had trouble remembering things at work (he was a computer programmer) and went from being one of the best to being lost in a cloud of post-it notes and never quite having it all under control. He was taking an insanely high dose of tegretol, and tried several other drugs as well. They worked at first, and slowly stopped working and started causing side effects -- gum disease, weight gain, sloth. His neurologist recommended surgery, and his parents flipped out, screaming "No butcher is taking out any part of my son's brain!" and making other helpful comments.

He and I visited several hospitals for tests, over several months. He was taken off his meds and studied intensely as he seized, and many kinds of scans and mental tests were taken. They recommended a partial temporal lobectomy, to remove an area of the temporal lobe that had been damaged by an unusual veinous formation in the area. He had his surgery ten days before my senior thesis was due, and I sat in the ICU with my laptop and rewrote the entire thesis while he recovered, to incorporate new data I'd gotten that totally upended my original conclusion. I tell you this to let you know the stress he and I were under during this period, which compares somewhat to having a new baby, although is obviously qualitatively different. I was also worried because I'd read that a temporal lobectomy can result in a loss of memories formed up to three years ago, and we were just at our three-year anniversary when the surgery was planned.

Anyway, the surgery was successful. He was in the ICU for three days, then on the floor for a week, and then home with me taking care of his wound and making sure he kept up with the antibiotics and antiseizure meds. He remembered me, and still loved me, and although the post-surgical pain was a doozy, he was well cared for and the swelling went down quickly and he never got infections or other had other medical problems.

Over the next few weeks, he went almost entirely back to normal, save for not having seizures any more. He still took the meds, and as far as I know he'll always take them. But the seizures have also stopped entirely.

The positives, for him and for me: The total cessation of seizures meant he could be safe, could drive, could stop leaning on me as a quasi-parent. The drug dose was dialed way down (from 11 pills a day to 2). The progressively worsening conditions (number and severity of seizures, memory loss, drug side effects, fear of injury) were reversed.

The negatives were that he lost much of his personality. The surgery dulled his ability to feel feelings as intensely as he had before the surgery, and he therefore sought out experiences that would push his feelings to the limit: sky diving, extreme skiing, and other things that someone with a history of brain surgery should never do. (The skull never regrows, never heals, so the piece of the skull that's removed for the surgery is put back, but it's essentially held in place by the scalp tissue that grows back in place. This will be a permanent weak spot, and brain surgery patients are cautioned to avoid activities that risk head injury, because they can be so much more dangerous to them.)

Still, in retrospect, he and I believed that it was well worth it. The progressive deterioration that uncontrolled seizures causes was an awful path we'd been down, and he was only 23 at the time -- clearly the rest of his life was just going to be a downward spiral. He likely would have lost much of his personality anyway, along with his memory, his adventurousness, and possibly even his life if he made the wrong choice while having an absence seizure.

Surgery is not an easy ticket to seizure-free life, but it may be the best option. You can go through all the pre-surgery tests to get a better idea of how good an option it's likely to be, and hold off making a decision through the process.

On another note, my husband is an anesthesiologist, and through his work I've learned a bit about the risks of anesthesia. Although this field was considered very high risk many years ago, major changes in process have made anesthesia one of the lowest risk practices in medicine. This doesn't address the surgical risks themselves, but at least the anesthesia is statistically unlikely to be a problem.

So, my advice would be to go through the pre-surgical testing, as knowing what's involved gives you a much better perspective. No amount of testing requires him to get the surgery, but the information gained will make it all much easier to evaluate. You're looking into a dark cave, wondering if you should wander in. Someone's offering to turn on some lights; take them up on the offer, and look around.

Best of luck, and congratulations on the upcoming little bun in your life.
posted by Capri at 9:53 AM on August 14, 2013 [3 favorites]

"The skull never regrows, never heals, so the piece of the skull that's removed for the surgery is put back, but it's essentially held in place by the scalp tissue that grows back in place. This will be a permanent weak spot, and brain surgery patients are cautioned to avoid activities that risk head injury, because they can be so much more dangerous to them."

This is not what we were told, my son has no restrictions on activity at this point. He's planning on playing rugby this fall. It takes a while, but the skull does heal. Here is some more info. There have been tremendous advances in brain surgical techniques over the last few years, this may be the reason for the difference.

Nevertheless, there were some annoying side effects, MeMail me if you want details.
posted by cosmac at 10:29 AM on August 14, 2013

There is one other non-surgical treatment that you might want to consider, if you haven't tried this already: a ketogenic diet. The diet is an adequate protein, high-fat diet which forces the brain to switch to using ketone bodies instead of glucose as primary fuel.

This is not woo, and in fact it was a common treatment for epilepsy before modern anticonvulsants were developed. In the last 20 years it has regained currency as a treatment particularly in drug-resistant epilepsy. Though it's used primarily in children and there haven't been that many studies in adults, a Cochrane review suggests that the problem may be less the efficacy and more the compliance. It's not an exciting way to eat and it's pretty restrictive.

There's some evidence (from animal models) it might be neuroprotective in the long run. Sometimes the seizure control persists even after the diet is stopped, although I would be extremely careful about making promises here and I suspect that is more true in younger people and after following the diet for a long time.

Still, some people swear by it -- adults too -- and it would be a shame if you weren't presented with this option. If nothing else, you can still go for the surgery if you try the diet and it doesn't work.
posted by rhombus at 2:43 PM on August 14, 2013

I know I'm late, and there are some amazing answers from medical professionals up there, but I will give my 2c...
I have a very good friend of mine who was diagnosed with Absence Seizures when she was small. She was medicated and it did well to treat most of the time - the relevant part of this is that she did have the surgery at 40. The one thing she has consistently said is that it was like a lightbulb being turned on afterwards. She was unaware of how much it had affected her life having them and having to be on the meds. Literally, she went from being told she couldn't have children because she could never be alone with them, to being a fantastic mom.
I would be concerned about those types of things - at some point, if they are not controlled (or even if they are mostly controlled) will he be able to drive? able to be alone with his child, etc, etc. and is that something you both are willing to live with, especially if it gets worse.
posted by niteHawk at 6:32 PM on August 14, 2013

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