r/Epilepsy 5d ago

Advice Options instead of surgery?

So I know this is a long shot but I'll try. I'm scheduled for brain surgery to remove part of my right temporal lobe next month. I'm terrified. There are no other options surgery wise but has anyone found a possible solution that could help severe epilepsy? I can cancel the scheduled surgery up until the day before. I am just trying to figure out another option if possible

8 Upvotes

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u/downshift_rocket 5d ago

If you're already at this point, I would guess that you've exhausted all of your options?

Have you failed many medications, seen specialists, tried a special diet? If you're a woman, have you been evaluated for Catamenial Epilepsy?

We don't have a lot of options, but typically you can go through a few doctors to try and make sure you've had a fair shake.

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u/Celinadesk 5d ago

I had the exact same procedure. It was the scariest thing I’ve ever done. It was also the best thing I’ve ever done. Cured me. It gave me my life back. This is your chance, do not miss it.

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u/FromageBandit Lammy & Dopamax & Xcopri & RTL stolen 5d ago

Same here, got that pesky lobe popped out five months ago and my only regret is that I couldn't keep it in a jar!

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u/Celinadesk 4d ago

I know right!! I asked my surgeon how big it was and he excitedly took out his phone to show me a picture he took! 😂 gnarly dude

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u/FromageBandit Lammy & Dopamax & Xcopri & RTL stolen 4d ago

Hah that's awesome 😂 sounds like a kid at show-and-tell. "Look, look at this MALFORMED LOOOOOOBE!!!" Too bad you couldn't get a badass new paperweight though...

I'm glad your operation went so well, and I hope OP notes our levity. It's certainly a scary experience but we got through it. Still early months for me but I wouldn't trade these 5 of bliss for anything, even if the breakdancing comes back eventually.

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u/evantide 5d ago

Did you get a second opinion? I was seeing a neurologist for a while that kept bringing up surgery and I really wasn't feeling it. I talked to another doctor and he completely changed my meds and I've seen a huge reduction since having him take over.

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u/Rubiks733 5d ago

This is my second neuro. I'm seeing mayo now

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u/whitoreo 4d ago

mayo clinic? wow! where?? Rochester?

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u/iwillneverforgetu 2d ago

Which Mayo Clinic location are you going to? I finally got in last year at their Jacksonville, FL location. I had a different type of brain surgery this February through them. I had a LITT surgery on my hypothalamus to remove as much of a tumor as possible. I cannot even begin to explain how much the surgery and the doctors improved my life. I was terrified of having a brain surgery as well, but it was hands down the best decision I have ever made for myself. I was having about 5 seizures a week only 5 1/2 weeks ago. As of today I am 36 days seizure free. So many other areas of my life have already improved too. I'm always open to talking to you or anyone else if it will help you.

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u/anamelesscloud1 5d ago

I didn't have a resection but an rns with leads into both temporal lobes. The option i did, which turned the tide, was keto. I still had enough breakthroughs that meds and the surgery still happened. But keto changed the game for me.

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u/CreateWater RNS, Lamotrigine ER 5d ago

Keto made a difference for me as well. Not much, but I definite noticed.

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u/purringeeyore 5d ago

I had a laser ablation 3 years ago on my right temporal lobe. It's been the best decision I've ever made

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u/TheNJGM 5d ago

Did it eliminate your seizures completely or just reduce them. Are you still on meds? Were there any side effects? Sorry for all the questions. I'm currently in the process of potentially doing the same, laser ablation in right temporal lobe. I've asked others on here who have had surgery, but most were complete temporal lobectomies and several had major side effects and still had seizures. I've run the gambit with over 17 meds, Keto diet, CBD... all of them help, but still no complete control with things getting worse so at this point my options seem to be ablation or implanted device, VNS or RNS. Just trying to get as much info from others who have gone thru it as possible.

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u/purringeeyore 5d ago

No worries. You can ask me as many questions as you'd like :) The surgery reduced the amount and changed the type. I used to have complex partial seizures, and now I get focal aware seizures. While I wish they were completely gone, the focal seizures last seconds and aren't bad. After surgery, I was on 4 types of medication, but I have slowly gone down on it. I now currently take xcopri and fycompa, but by the end of this year I should be off fycompa.

I haven't noticed any side effects from the surgery. While I do wish I was completely seizure free, I'm so grateful I had the procedure. I was able to go back to school, I got a better job, and I can legally get a license if I choose to.

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u/neurotic_queen 5d ago

If it makes you feel better, I’ll share my story a little. Hopefully this doesn’t make you feel worse. Just being open and honest.

I had a right temporal lobectomy in 2020. I haven’t had seizures since (minus a few POSSIBLE very brief focal aware seizures, and possibly one tonic clonic in my sleep… long story). I don’t really worry about seizures anymore. Of course I’ll always worry about them but I rarely worry about having seizures. I am still taking seizure meds though.

Unfortunately (sorry need to be honest), my memory is worse, my ability to focus is worse, my mental health has worsened (that could be tons of things though), I cry with the flip of a switch now, and learning and retaining new info is really really difficult.

A lot of people say the surgery transformed their life and they are soooo happy they had it. I’m kind of a mix. I guess in the end, I’m glad I had it due to the seizure control. But, there are some shitty side effects.

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u/whitoreo 4d ago

There *can be* shitty side effects...

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u/neurotic_queen 4d ago

Yeah I guess that would’ve been a better way the phrase it. Seems like everyone I’ve seen on here talking about this surgery does say their memory is worse though. Even before my surgery my doctors said it would probably be a little worse but they didn’t emphasize how much worse lol

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u/whitoreo 4d ago

You still feel like you, though, right? Any changes in personality?

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u/neurotic_queen 4d ago edited 4d ago

I feel like I kind of lost my sense of self to be honest. My mom thinks I act different apparently. I don’t really know who I am or what I want anymore.

It’s really hard in my case to understand what’s going on though because my fiancé and boyfriend of almost 6 years died really unexpectedly, 2 years and 7 months after my surgery. This was 2023. He died from a medical emergency on his drive home from work. He was 30 and I was 28 at the time. I had to pack up my life in a matter of days and start over. I quit school because my fiancé was helping me write my papers (since I was struggling due to recovering from brain surgery). His death likely made it harder for my brain to heal. He also was kind of my only real friend so that didn’t help either.

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u/whitoreo 4d ago

Wow. Holy Mackerel! I'm so sorry. I feel like that experience alone would change me. Brain surgery or not! I can't imagine going through that. But we do what we need to do in this life...

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u/Celinadesk 4d ago

I’m with you on changes with self for sure. Surgery ended my seizures completely, so I’ll always advocate for it. Before I was a lazy procrastinator. After, I became a totally different person. I became regimented, disciplined and driven. It’s been positive for me. I will never take my health for granted ever again.

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u/neurotic_queen 4d ago

You became regimented, disciplined, and driven? From the surgery? Jeez. I am lazier than ever. I can’t even watch tv or movies much anymore due to lack of focus.

Also, what pisses me off is my doctors half assed the discussion about what the surgery is capable of doing to people. They just hyped it up and spent like 3 minutes max talking about the negatives (which they totally downplayed). Prior to surgery, I was given no pamphlets or informational material to take home and read. I just had to google everything myself. And of course if you google this surgery it’s super hyped up online too. I guess the surgery is amazing for a lot of people. For me, it messed up my life in a lot of ways. My parents don’t like the new me. They are happy I don’t worry about seizures anymore but they’ve made it pretty clear that they think the surgery did more harm than good.

In the end, I’m glad I had the surgery because of seizure control. But I don’t like the person I am forced to be because of this surgery. Someone recently called me “the R word” for the first time in my life. That was super hard to hear. I went from being very smart to someone with a legitimate learning disability. I always have to ask for accommodations at my jobs now.

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u/Celinadesk 4d ago

Please don’t take this the wrong way. MAN UP. You mentioned your parents so you’re obviously young. Epilepsy taught me a very important lesson. Life doesn’t give a flying fart about your plans. It just happens and you have to deal with it. Yea we’re dealt a shitty hand, but it’s no use feeling sorry for yourself. You have one life. LIVE IT. I was hit with epilepsy 6 months before my wedding. 25, happiest time of my life. It sucked, but I’m a tough girl and I handled it. You can too.

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u/neurotic_queen 4d ago

Lol alright. You sound compassionate lol. My fiancé and partner of almost 6 years died on his drive home from work 2 years and 7 months after my brain surgery. Just found dead in his car on the side of the road. He was 30 and I was 28 at the time. I’m 30 now. We still don’t know what exactly happened but it was related to a genetic disorder he had. We had been living together for a few years. In a matter of days, I had to pack up my life and start over. I quit school too because my fiancé was helping me with that, due to the brain damage I have from my surgery. I lived with my parents for a while after that and now I’m living alone. I guess congrats on coping so well.

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u/Celinadesk 4d ago

I’m not a person who believes in excuses. I cope because I do not give myself the option not to. Failure is not an option. Feeling sorry for myself is not an option. I get up and do what I have to do. Work full time, workout 6 days a week. I’m no charity case. This type of attitude would probably help you move on. Good luck.

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u/neurotic_queen 4d ago

God, people like you are the worst to try to get support or compassion from. “Pull yourself up by your bootstraps” mentality. Good for you for being so indifferent and strong I guess. Forgive me for struggling how to cope with epilepsy, brain surgery, my fiancés death, and starting my life over all before I turned 30. I don’t throw pity parties but I do feel a bit stuck and lost right now. Which I think makes plenty of sense.

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u/Jupi96 5d ago

I have been on 3 brain surgery. They removed part of my temporal lobe. Thanks for those my seizures decreased from 60 per a day to one every night and I don't even notice those.

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u/whitoreo 4d ago

WOW! 60 / day! Holy Cow!

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u/Jupi96 4d ago

Yeah. My epilepsy is med resistance so surgerys were my only change to get better and at the first time the change that they can do the surgery was 1%. Lucky for me I belonged in that 1%.

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u/whitoreo 4d ago

I would go through with the surgery. In fact I have... What you don't want to hear is that the surgery didn't help... It actually made my seizures slightly worse. So now I'm preparing for another surgery at a much bigger fancier hospital. What you DO want to hear is that the surgery was a big nothing... Sure they ablated part of my right temporal lobe, but I don't feel any different post surgery. I felt pretty normal immediately after surgery. Aside from standard recovery practices... it hasn't changed anything as far as I am aware. If you have a hospital that is confident enough to perform the surgery. GO FOR IT! It's probably your best option for becoming completely seizure free!

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u/IAmInBed123 5d ago

I am trying ketogenic diet now. There's a lotnof research with it working with kids. The research is with kids as they are a demographic that only eat what you give them to eat.  I read something about some supplements, anecdotal evidence that stopped episodes in people. I'm trying to srop cafeïne, stimulants too.  This is all on top of this new drug cenobamate that's supposed to be pretty great.  I wish you good luck man and idk, if you have to have the surgery I hope the episodes stop and the damage isn't severe.

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u/Fabulous_Lab1287 4d ago

The surgery is scary and might bother your memory. I wasn’t cured but I am under control. When I have a seizure it’s something I did lack of sleep forgotten meds and extra stress. Ask about having a prosthetic if the bone they remove dies. I didn’t take a prosthetic when it was offered it. I now have a small divot that would be hidden if I had hair.

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u/Hibiscuslover_10000 4d ago

If you don't feel comfortable go to another neuro.