IAMA 21 year old male, brain surgery survivor, that is currently 1 year seizure free! AMA!!

Im soo glad your doing better; but the million dollar question.
What is the image on the blanket?

Iron Man, baby. XD

Are there any residual effects from the surgery other than not having seizures?

Now? No. Around the 6 month afterwards mark I started having some severe anxiety, but that was taken care of fast. Other than that, not particularly.

How did you take care of it and what were you anxious about, if you don't mind me asking?

It was actually an effect of my brain healing, as it was explained to me by the doctor. They had set me up with a pre-surgery therapist visit to see if anything changed afterwards. Going back to said therapist, I was prescribed sertraline to alleviate that chemical imbalance. And I would be nervous about anything, really. I didn't want to go to the therapist initially, (even though they told me to) because I was afraid they would put me in an institution if I said the wrong thing.

Do you still have to take the medication to this day? Or did the anxiety go away and now you no longer have to take it?

Yes, I'm still on it for the sake of precaution, just to make sure I'm fully healed. We probably won't start coming off of it until after the 2 year mark to make sure. That anxiety was for real.

Any speech or memory effects? Are you still on anti-epileptic medications, and if so, do you ever anticipate being able to come off them? How frequent were your seizures pre-surgery and what sort? My daughter has TLE, so I am very interested.

Not necessarily. I might tell or show someone something I've already shown them, but that's about it. And yes, I will be on anti-epileptics until 2 years after surgery to make sure I don't have a "memory foam" seizure. My brain still remembers what seizures feel like, and what triggered them, so even though that scar tissue is gone, I could've had one based on that alone. How old is your daughter? What medicines has she tried?

I have never heard of the phrase "memory foam seizure" before... (I have temporal lobe epilepsy here)... But something about that phrase seems so... Right... during partial seizures I've noticed that they were accompanied by certain thoughts... tho for the life of me I couldn't tell if the seizure was causing the thought, or the thought was causing the seizure...

But it makes so much sense that a thought can cause a seizure... when in the hospital after I had my initial grand mal, when a technician was wiring me up for an EEG, she asked me what I remembered leading up to the seizure. So I started describing it... Up to the point of remembering a very weird feeling. And sorta added "kind off like I'm feeling right nowwww...." trailing off... And... Then I was in a hospital room... not quite realizing I was missing some time.. like where the hell did the technician go? Or the room I was in for that matter? Eventually having it explained to me that I had another seizure.

I've been convinced for years that the action of trying to recall what the start of the seizure felt like actually caused the second one.

I have since been on anticonvulsants, so I've never really been able to test that theory. (Not that it would be a good idea to do so).

Yes, I actually just came up with it lol. It actually makes perfect sense that seizures would be associated with thoughts, since the TL is where our memory is housed. Used to, I would smell something, see something, feel something etc. And get this sense of deja vu. That would be the aura, sometimes that's all it was, sometimes it got worse. It's really interesting that someone else had the same experiences I did..

Did they keep you awake during the surgery? I heard they do that for brain surgerys

They talked about it, but didn't end up doing it.

Was this your Right Temporal Lobe that was causing the epilepsy?

Absolutely was.

Congrats dude!! I had 2 head surgeries before. 1 craniectomy and blood clot evacuation due to ruptured AVM, and a cranioplasty. I had a grand Mal seizure a day before my radio surgery and that was last October. Although the incident left me with a stroke on the left, but I still consider myself to be very lucky. Having no cognitive impact and still able to work and continue with my life. rock on buddy!

1 question. After this incident, how has your life changed for the better?

Several ways. I can drive now, I don't have to worry about them anymore, for some reason the surgery made me mellow out a lot, where I was really angsty and angry, I'm just kind of care free and accepting now.

That's great to hear! Yeah, when one has been through a life threatening surgery, our outlook on life seems to turn better and more positive. Oh anyway, I just realized we are the same age!

What?? How do you know that?

Do you think your angsty/angry was linked to medication maybe. Asking because probably a year after my Pops was diagnosed with epilepsy he became quite angry, grumpy and nasty. I thought it was maybe his meds (sodium valproate - spelling!!!). Maybe it wasn't meds and was to do with brain activity!

My guess has always been, since my brain was constantly irritated, I was constantly irritated, if that makes sense.

Nice, I work in neurosurgery and it's interesting to see a patient follow up. I've seen a fair few DBS implant procedures but I don't see the neuro rehab much, just the surgery. Usually once we get a patient to recovery we don't see them again, it's down to the consultant.

How long were you in hospital for? (Pre and Post Operatively) Did they give you the technical jargon for your procedure, did they describe it in layman's terms, or both?

What were the neuromodulation programming sessions like? I imagine it's somewhat like somebody is hacking your brain (I mostly see DBS patients who have parkinsons, so the results are often dramatic) I don't know what it could be like with epilepsy

How does it feel to have something implanted inside your body all the time, and how often to you have to go get the battery changed? (I assume you've got an IPG).

Finally, do you set off airport scanners? And if so, do you have a card which lets them know you've got a DBS in?

I was hospitalized for 6 days total, electrodes on the first day, resection on the 5th. I actually didn't get the neuropace if I understand you correctly. The surgeons did a pretty good job of breaking it down for me, they pretty much understood that I didn't go to school for it lol.

How bad ass is your scar going to be?

Yup.

Did you get brain surgery for epilepsy? If so, did they do the thing in which they put electrodes on your brain, found where the seizures were coming from, then sent a pulse to that area of your brain? If so, what happened when they sent a pulse to that area of your brain? In that proof photo, are you on reddit? XD

Yes, I absolutely did. But they didn't send the impulses through the eeg, they talked about doing that to see which areas were affected, but all they did was left them in and let the seizures happen so they could get recorded. That turban you see has 20+ ft of cable running to a black box on my left that weighs about 10 pounds. This box was dropped by nurses at least twice during my stay......

But there was a break away in the cable, right? It's not like it cord could have been yanked out or your brain, right?

I ASSUME there was, all I know was there was like 20 extra feet of cable in the turban in case that happened.

Did u have the intercranial eeg and subsequent crainiotomy surgery? I ask BC it sounds like we had the same surgeries for seizure control. I've been seizure free since 2011

EDIT Congrats!!

Yes I did! What part did you have operated on?

Right temporal lobe epilepsy. Had a tumor removed in 10 and it created epilepsy problems. They took a bunch during the same surgery u had. Part of my amygdala hippocampus RTL and some scar tissue got cut out. Can u believe they don't let you take that shit home and display it in a jar?! We worked for it! My neuro was awesome tho and he got me the full pathology report so I at least have b&w pics of the pieces.

Obviously I'm jesting (some) That was a long 11 days but worth the results 100%. Glad to hear you're doing so well!

They at least gave me the cables from the eeg, and the staples from the scar. I have them in a jar lol

Can I just ask, why did you require brain surgery? I'm assuming you have a history of seizures, is it epilepsy?

I had some massive head trauma as a child, resulting in scar tissue on my temporal lobe. Yes, it is called temporal lobe epilepsy specifically.

What incident caused head trauma? Was your brain condition caused solely by this incident, or were you genetically predisposed?

I fell as a child, and had to be airlifted to children's in Birmingham, AL. Yeah, that's when they started. Nobody else had the condition that we know of.

Can you share your pre-operation experiences?

What do you recall was the first post-operation memory you have?

Pre-operation: I remember everything. I remember getting to the hospital, changing into the gown, hell, I remember being in the room before they put me under. First memory afterwards? First surgery: catheter. All I could feel was painful pressure, and of course I was delirious so I was like "dafuq is this? Get it out". Second surgery: headache. Woke up in NICU with an astounding headache, and had to wait for what I'm sure was 3 minutes but what seemed like 48 hours for them to get dilaudid approved for my iv.

Did you have a bolt or an icp/cpp monitor in? I was just working in neuro last night and had a patient with a bolt and I'm just curious what that feels like or just kind of what it's like in general. It's usually hard to ask about it on nights because everyone is asleep.

A.......bolt?

Yeah its a bolt thats screwed into the skull. It monitors icp and relieves pressure from subdural hemotomas and other kinda of issues that can increase cranial pressures.

Oh no, I had an internal eeg and a temporal lobe resection.

Right on, well glad you're doing well now! Neural stuff is just fascinating to me.

Well they took a picture of the brain during the procedure if you're interested in that.

Oh I am lol. I'm sure a lot of people are but probably needa nsfw tag.

NSFW PICS OF MAH BRAIN.

NSFW BRAIN PIC WITH INTRACRAINIAL EEG CABLES.

So, did your daily life changed much? Do you have new friends? Girlfriend? Hobbies? Do you spent less time in the internet now and enjoy the life?

Well, yes and no. I've had the same girlfriend for almost 5 years. She was there with me through the whole thing.The only reason I've gained new friends is because I work or go to school with them now. I still spend plenty of time on the internet. However, due to the MASSIVE boredom from not being able to lift over 20 pounds for 6 months during recovery, (I mean you're not house ridden, but what else are you gonna do? There's only so many video games I can play.) The day I got cleared to lift and move, I enroll back in school, apply for a serving job, and a retail job. I'd like to get off on a tangent about how nobody should have an excuse not to find a job, but I won't.

Well done! I can totally imagine how elated you are..!

My wife went thru this too. Lobotomy I think it was called. After 20 years of seizures and misery, she finally went thru the surgery and boom.. surgeon came to review hours after the surgery, and casually but confidently said "she's... okay now. she's cured." Even the skeptic in me couldn't stop me from crying. And he was spot on too. EIGHT years seizure free!!

Long it may continue for her and you too!

PS: Hospital looks familiar. Are you in Ireland by any chance?

No, I'm in Alabama, US. and I believe it's called a lobectomy. What were causing hers?

Lobotomy

Some sort of temporal lobectomy indeed. She had a bad scar (more like void) and seizures were originating from there - is the best how I can explain it. She was getting partial seizures 10-20 times a day despite being on a concoction of various meds (including topamax, which was just horrible). She would get tonic-clonic seizures once every two-three months or so as well. Doctors kept experimenting drugs for years without any progress and I am not sure what they were hoping for. Surgery fixed it, 100%.

She came off the drugs over the next 18 months, driving license, pregnancy, kids etc. I am forever thankful to the team that operated on her. I don't think the world knows or appreciates how hard and debilitating epilepsy really is.

Minus the tonic seizures, this is EXACTLY what I went through. Modern medicine, right??

Have CBD ( cannabinoid ) oils played any role in your recovery and being seizure free ?

No.

What got you to the point of surgery? Were you non responsive to the medications? Did you have any side effects from medication and/or this surgery?

I've been trying medicines since I was 5, some slowed down the frequency, but none stopped them altogether. We didn't try "every" medicine, but we wanted to get this fixed while I was still young.

What was the name of the surgery?

They are talking about using...stereo something something abalation on my brother to burn out a hamartoma to hopefully stop his epilepsy. It's apparently a very rare thing.

The name of my surgery was called a temporal lobe resection. I physically had my right temporal lobe removed. Most likely what your brother is being told of is similar to the gamma knife surgery, which is an outpatient surgery. This is safer, much less stressful, and much less dangerous than mine.

So did you have some brain removed? Do you still have the same identity?

Yes, they took out part of my right temporal lobe. Nope, I'm still the same jackass I was before.

are you now cognitively deficient in some areas?

Not that I've been able to tell, no. I still have the same intellect I had before for the most part.

cool. thanks for the AMA

does finger guns

I have TLE too and have been on meds for twenty years, with partial success (mostly night seizures now, maybe once a month, though it varies). One doctor recently mentioned surgery but I felt very squeamish about it, mostly for this reason. I asked him if I could talk to other patients who'd been satisfied but we never got to it, and I've since moved & switched doctors.

Anyway - can you provide more detail about your mental experience before and after? Were you concerned that things might change?

And perhaps thoughts / advice on whether it would be worth it at this stage? How hard a decision was it for you?

To say "minor brain surgery" is kind of an oxymoron, but temporal lobe resections are the most common procedures done on the brain, with over 500 being done every year. I had some concerns, whether my personality would change, if I would lose memory (since it was temporal lobe). All my questions were answered, and by time for surgery, I had no fears. Your brain literally rewires itself. How old are you? How long have you been dealing with this?

I guess it's longer than twenty years - I was initially diagnosed in 1986 when I was 12. But meds seemed to work until college, when things got a bit unreliable, and then it's been up and down since then. I've tried a bunch of different combos over the years but the prescription I'm on now has been the same for the past five years at least. I like the idea of not having to remember pills and find/pay for meds between jobs or when traveling, and as I said, I still have occasional seizures. Plus I may experience side effects from the pills...

Can you drink alcohol? That's something I've given up in hopes of keeping seizures down but wouldn't mind being able to do now and then... How long were you medicated before surgery became the clear choice? I only had this one doctor in NY bring it up and I didn't look for another surgeon because it sounded too unsettling. The doctor who brought it up with me seemed less assuring that there might not be some after effects... Do you think you ever had/have side effects from medications? [edited - clarity]

I can drink small to moderate amounts if alcohol, yes; the only reason for that limitation is because massive amounts would react with my antidepressants. I was medicated for roughly 15 years before we were like "fuck it, these aren't working." And I don't remember being nervous at all..

Have you noticed or has anyone you pointed out any changes in your personality?

I've chilled out a lot. I used to get angry a lot easier, now I'm a lot more mellow, dgaf.

I hope this doesn't sound like a dumb question, and I haven't read everyone else's so I'm not sure if it's been asked. how long was the wait period before you actually had your procedure? and how nervous were you? I know that is probably a dumb question, but I've heard that some people are more excited than nervous because they feel like they'll finally have their freedom. if that makes sense?

I can't remember exactly how long the wait period was, to be honest. And yes, I was a bit nervous because I was having what makes me ME cut on, but once they explained to me it was no big deal, I started to look forward to it.

thanks for the reply!!

Yes mam :) if you're interested in this sort of brain thing, I did a lot of studying before and after the procedure, feel free to pm me with whatever questions come to mind later on.

I'll probably do that (: I'm actually taking a neuropsychology class right now and it's fascinating to me. (:

Neurophyschology? How is that different from regular psych?

Have you had any difficulty in normal activities, like reading or writing? Can you do the things you did before the surgeries?

Not at all! And when I woke up, I could play the banjo!

Thanks for answering!!!

shoots finger gun you too!

What is your prefered type of cheese to eat on Wednesdays?

Usually Fromunda cheese.

My daughter is one years old and we're been told she's most likely epileptic. She still has to get an MRI and EEG. She's had 3 seizures is the last 5 months. Any advice you could share? How old were you when it all started? Did they get longer or worse through time which lead to surgery? Can it run its course?

I was relatively 3-5 when mine started. No, they will not go away. Expect a childhood of doctors visits, MRIs, week long doctors stays, (these are rare, but happen) and searching for the right medicine. If you can find one that works, great. You're one of the lucky ones. If not, don't shy away from the option of surgery. It's a hell of a lot better for her to have it done at 18-20 than it is at 48-50 after a lifetime of not being able to drive. If you don't mind me asking, what does she do during a seizure? Does she give the 'thousand yard stare'? Or does she tense up and seize?

She's done both. First time we were at restaurant and it felt like she was just dead in my arms(worst moment In my life). She didn't jerk or nothing. Just had her eyes rolled back, first thought of my was seizure. But Since she was eating, we jumped to the she's choking mode. Second she did the same hardly any movement. But she has fallen off her little toy truck so ambulance took it as head trauma. By the third I've research how to handle her while it's happening. This time it looked like a full on seizure if that makes sense. Eyes rolling limbs jerking, drooling. Her first was April. We called doctors left and right and it took till August to actually get her in. Oct 12 is her EEg.

I'm not a doctor of course, all I can tell you is don't take this lightly. Run all the tests you can, if a medicine isn't working, change it. Don't hesitate to consider surgery as an option when she's older. They will look, they will scan, you will go to several different doctors. You will find one doctor that says "yep, this is what it is." And your search will be over. It won't just be "seizures" anymore. They will have a name. Good luck to you. I'm always here for questions.

One thing we found out last few days is that my wife's grandma's brothers(two of them) were epileptic. Maybe genes come in play? You're right were not taking this lightly and we're gonna take it head on. Dr gave us emergency medicine in case it last more than 3 mins. Thank you means a lot. Good luck to you as well. I sure not having one of those BS seizures feels great!!

Epilepsy can absolutely be hereditary. And yes, it does! It's freedom :) your daughter will experience that one day. I guarantee it.

That's incredible, man. Congratulations! Are you and/or the doctors concerned that the seizures will ever come back?

I was told that the surgery has like 95% success rate, so Nah. I'm good XD

What tests did you have to have it done to prove you need the surgery? When I was two I had a granmal seizure. Till this today. I kind of have small ones.

All kinds of tests throughout my life. MRIs, EEGs, WADA tests, different medicines, etc. When they've determined 1. What it is and 2. That they've exhausted all options, surgery will become an option.

Congrats!

I just got out of surgery a couple days ago; mine wasn't a resection though. I'm glad it's working out so well for you. What kinds of seizures did you have? I'm so happy you're a year seizure free! That's awesome.

I had temporal lobe epilepsy. What did you have?? And what procedure did you have?

I just had deep brain monitoring for my epilepsy; also temporal lobe. I'm going to be getting the RNS in a month or two.

Is your case inoperable? Did they say why?

Dick works?

.........?

Did you know when you were in the middle of the seizure? Like, were you fully aware of your surroundings, there was just nothing you could do? or when you had a seizure, things just went black and that was it?

When I was having an aura, I was still fully aware. When I had a seizure at its full strength, no. I was responsive, but I was pretty much on cruise control. I'd respond with off the wall answers just so something would come out.