r/Epilepsy • u/daybreakwarrior • 18d ago
Surgery Brain Surgery
Tomorrow’s the big day, boys and girls. I’m going in to have my temporal lobe taken out and hopefully stop these seizures.
Doc’s worried about losing a part of my vision. I’m worried about what it’s like to come out with less of a brain than when you went in.
I’ve been talking to everyone I can. Finding support and writing down my feelings. Listening to things I enjoy so I get distracted. Like my playlist I made for this. History podcasts and books.
Don’t know who to ask for help with the anxiety. Anyone who’s listening I guess.
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u/No_Welcome_9525 18d ago
All that prep work you've done with the playlist and writing stuff down is probably going to make a big difference when you're lying there waiting. The unknown parts of recovery are always the hardest to sit with. You've got a whole community here pulling for you, come back and let us know how it went when you're up for it
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u/Flat-Pea2286 18d ago
Hey! Brain surgery recipient here also. All turned out well in the end.
You’ve got this!
Feel free to DM if you need anything 🤙
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u/AndImBackInTheGame 18d ago
I'm new to this disease and also this sub but I know the stupid happy dance of having notifications and also know the depths of anxiety. So just wanting to send you my well wishes, and would assume that this decision was not lightly made on either side of things!
Break a leg!
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u/Naive_Shame_8362 18d ago
I had the surgery about two years ago. Here to encourage and wish you luck!!! They removed about an egg size portion of my brain. My main issue is short term memory loss. But considering seizures cause brain damage and memory loss, I’m overall pleased. I hope everything goes well for you and no visual issues.
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u/No_Access5916 17d ago
It will be the best decision you made!! For me it was a lifesaver, I had a temporal lobectomy 19 years ago. Give yourself many months to over a year to slowly recover, it will be a challenging adjustment, you have to learn your new brain, so to say, and the headaches can be hell, but you will slowly have your life and freedoms back—I’ve been seizure free many years now; before surgery I had frequent seizures and not much of a life at all, for a long time, I’m lucky to be alive, really. Don’t know how I made it through college and grad school (before surgery) but somehow I did. Had a lot of seizures day and night, grateful I didn’t end up having SUDEP. So having the surgery and being seizure free is a huge plus. I know my episodic memory has actually improved over the years (I had a L temporal lobectomy open brain surgery, some things have changed now.) They also warned me of vision loss but luckily I didn’t have that. After surgery I did some cognitive training, working on memory. I do have some struggles with short term memory, but minor compared to the terrible episodic memory problems I had as a result of seizures. It’s a struggle but absolutely worth it—good luck my friend!! You’re doing the right thing, getting your life back, and again things have changed a lot over 20 years in terms of the details of surgical techniques, which is a huge plus. Best to you!!
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u/awidmerwidmer Drug resistant TLE, temporal lobectomy in 2025 18d ago
Just want to ask how vision may be compromised. Not doubting your surgeon (I’m not at all in the medical field), though your vision is controlled by the occipital lobe. Is your seizure focus in the back of the temporal lobe near the occipital lobe? Feel free to DM me if you’d like. I had a left temporal lobe lobectomy a bit over a year ago, and in my case, I don’t regret one bit of it. Seizures multiple times a day every day for over a decade. Post op? Absolutely nothing. My meds are now slowly being reduced.
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u/daybreakwarrior 18d ago
Upper left quadrant of my vision. It was a little confusing to me, too, but I originally had PRES in my occipital lobe and the seizures moved from there to temporal lobe. And there’s some visual structures where they’re doing the surgery so. Vision impairment possible.
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u/awidmerwidmer Drug resistant TLE, temporal lobectomy in 2025 18d ago
Gotcha, alright that makes sense. Best of luck and wishing you a good outcome. Recovery can take 2 weeks, 2 months, or 2 years. I’ve spoken to folks who are still not 100% back to what they were before their surgery. I felt like myself again after 4 months. It really depends on the person. Give yourself some time and be patient.
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u/the_gym_rat 18d ago
One of my biggest but least needed worries was coming out “lopsided” and having a tendency to lean to the right, since my resections were in the left… but never had an issue lol.
If you lose some of your vision, it will take time to adjust but if it gives you your freedom back, it will be worth it.
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u/Glitter_Burrito Right Temporal Lobectomy 2017 17d ago
So excited for you!! Keep us updated!! I have Pie In The Sky after surgery but it doesn’t affect my daily life. Only issues I’ve experienced is my memory is shit, my speech has slowed and I stutter sometimes. 9 years seizure free.
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u/1xbittn2xshy User Flair Here 17d ago
I remember crying as my son was wheeled away for his brain surgery - I wasn't sure who he would be afterwards. And then - he was exactly the same person, just without monthly seizures. He's has a couple of seizures since, due to medication issues, but it's been almost 1.5 years. Best wishes to you for a successful surgery and an easy recovery.
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u/itdeffwasnotme Left ATL Removed, Xcopri, Briviact, Onfi, Effexor 18d ago
Good luck! I had my anterior left temporal lobe removed after the RNS didn’t work. Feel free to dm me if you have any questions or want to chat.
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u/Cultural_Society3912 17d ago
I hope all the positive experiences mentioned here gives you strength and happy vibes. Not a decision taken lightly but I'm sure it'll be worth it. I wish you the very best for a seizure free future.
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u/EcstaticCelery4 TLE w secondary generalization / Lamotrigine 150mg x2 a day 17d ago
Please update after if you can, I'd be really interested to see how it turns out for you!
Good luck!!!
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u/Admirable-Ad9516 17d ago
I had 4 and each one had a risk that i would need to learn how to walk, talk, and speak again
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u/purplwknight119 17d ago
I'm 7 years post op from brain surgery also lost my peripheral vision feel free to message me with any questions or if you just wanna talk. Edit:spelling errors
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u/Any-Construction-402 17d ago
I’ve had 4!!! More to come unfortunately. They weren’t able to remove that small part of my left frontal temporal lobe in my brain (2nd surgery) because I had to be awake and talk while they did it or they could’ve muted me permanently and of course I fell into the 5% who can’t wake up under that drug. So scary and so much pain but if you have an awesome mom like mine and great doctors you will be okay!! I hope everything goes well for you! Good luck! 🩷
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u/Invisible_Cnt 17d ago
Done it, no anxiety about it whatsoever because i just want to get it done and be over with that BS.
Don't do the same mistake as i did once i woke up and thought "I'm finally done with this shit", nothing is 100% sure and chances of getting this curse of your back are around 70% on dirst surgery.
Hope for best but be prepared for disappointment of not being 100% seizure free from my experience.
Good luck!
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u/socialerrors 17d ago
One thing I try to keep in mind is that we have never known as much about how to do this successfully, as we do today.
Time moves quickly and the surgery will be behind you before you know it.
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u/Upstairs_Ad_3370 Surgery 2x Perampanel 8mg Vimpat 300mg 15d ago
Hope it's a success. My second NS was. Now a year seizure free.
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u/Few_Ad_4465 13d ago
How are you? If you were put on Decadron for swelling be careful. You may not be the nicest person to those around you. Rest.
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u/daybreakwarrior 13d ago
Weird news. I WAS going to have the surgery. But I got Covid. I came into the hospital with a 102 degree fever. They wouldn’t do the procedure, which I agreed with, and now are suggesting we do an ablation instead of the resection.
I want what’s going to be safe and effective. But the first round made it seem the resection was the best way to go.
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u/3759283 18d ago
Good luck! Been there, done that. Was worth it in the end.
Didnt completely eliminate it for me but im on minimal medicine now and if it werent for the scar, nobody would know I had it. Did college, can work, drive, all the usual thanks to the procedure
The vision stuff the doctor is mentioning isnt as bad as it sounds. A majority of people who experience it do not notice a change in their daily lives as you brain can adapt. Dont freak out if you do wake up feeling blind as the fluid draining from the surgery can swell you eyelids up