Right temporal lobectomy

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
12
Reaction score
0
Points
0
Hi, I was just wondering if anyone else has had a right temporal lobectomy and still have auras but no seizures. I had my surgery in 2002 almost 11 years has gone by and no seizures. Yay! however I have had a few auras that have scared me to death, the recent one just about 4 days ago! I am still taking 100mg of lamictal twice a day. I can't imagine dealing with complex paritial seizrues again! Just wanted to hear from anyone else that has had surgery and been seizure free for years and then the auras returned.

Many thanks!

Cindy
 
Hi Cindy.... weclome to CWE, but I'm sorry to hear that your auras have returned after surgery. Unfortunately, your story sounds so similar to mine! I had a partial right temporal lobectomy in Sept. 2001, taken off my meds completely about 18 months later, but thought it was completely behind me. I was 10 years and 9 months seizure-free, almost 11 years like you!!

Last spring, I had a few feelings that reminded me of auras, told my husband, but he hadn't witnessed anything at that point, so he told me not to worry about it until we had something to worry about. May 8th of last year, I had my first complex partial seizure in front of him... and many more after that.

I'm currently recovering from my second surgery which I just had on April 29th... hope that won't be needed for you, too! Hopefully an adjustment of meds will help you, good luck! Let us know how you're doing!
 
Thank you so much for replying to my post. I haven't went off my medication since my surgery, but have decreased it a lot. Yes, it is so scary! Was there anything that you thought might have triggered the seizure? Stress is a big one that use to always cause my seizures. Why did you have another surgery? Scar tissue?? What meds are you on?

I had my surgery at UVA in Charlottesville Va. What are your auras like? sorry for so many questions, but I am a little worried and I haven't shared this with anyone, so carrying the burden alone. My aura was a sense of fear that comes over me and a terrible feeling in my stomach along with deep breathing. My Faith is what keeps me strong!
 
I Cindy,

I also had a right temporal lobectomy. Mine was in the early 90s. I went a while with out seizures. I did have a few aura's from time to time but was never completly taken off my meds. Most auras happened they switched my meds from name brand to generic. Today I have partial seizures lasting about 30 seconds to a minute. They start with a feeling of fear deep in my stomach then moves up. So now were starting the porcess of finding the right combination of meds if that doesn't work then like second chances possibility of another surgery, I am currently on Tegretol since surgery In Jauary of this year I started 4000 mg of Generic Keppra and 150mg of lomotrigine.

Since you found CWE believe me you wont have to carry you burden alone. Everyone here supports every one. There are a lot of us who have had surgery or getting ready for surgery. Ask questions Most likely some one will have an answer or opinion for you!
 
They start with a feeling of fear deep in my stomach then moves up.

:agree:Mine too.

Cindy, I've tried to trace it back to something going on around that time, but there was nothing particularly "stressful". In the close to 11 years I had without seizures, I had gone through several very stressful situations, but no signs of auras or seizures, and I hadn't really thought too much about seizures coming back.

We tried medications... first Dilantin, then Keppra as an add-on, that wasn't working, so off Keppra, then onto Vimpat, that was worse for me, and then tried Phenobarb as the add-on to Dilantin. Those two were the easiest for me to tolerate, but I still didn't have seizure control. After the Video EEG, they noted that yes, there was still some scar tissue the remaining right temporal lobe again, as well as the hippocampus, and that once again I'd benefit from surgery since I don't respond well to meds.

Don't be sorry for the questions at all, hope this helps! We're all here with you, and for you.
 
Are your auras that frequent that you'd have to go through another brain surgery? I take 200mg of lamictal at night and 200mg in the morning. I have terrible chronic migraines since the brain surgery. I had migraines before my brain surgery but usually were hormonal or would get a migraine right after a seizure. Wondering if I should go back to a neurologist. I had an appt a couple of weeks ago with a neurologist that I have seen for about 2 years, but after my last appt with him I decided not to go back to him. I was having some crazy symptoms that he just laughed off and did not take seriously at all! I was having some like shocking feelings in my legs and sometimes stomach and I was concerned it could be that my seizures could be tring to start up again. He just said come back in a month. UGH! So now I am seeing a pain specialist for my migraines, but he can't treat me for epilepsy. Dealing with neck pain too...I'm just falling apart and no one around me knows! Guess I'm good at hiding things because I always tried to hide my epilepsy. Thanks for listening!
 
Knock on wood, my last aura & seizure were Tuesday, April 23rd, the week before surgery on the 29th! Prior to this second surgery, I hadn't gone more than 10 days without a seizure, and most days has several simple and complex partials. So I'm looking forward to hitting 3 weeks on Tuesday!:bigsmile:

I'd encourage you to find another neurologist if possible! I know when my seizures came back, I wanted to get some answers as to why:ponder: because it certainly didn't seem fair!

Sorry that you're dealing with so much, but keeping it all to yourself can't be helping your situation. I wish you only the best!
 
Thank you! Guess just the thought of living that life scares me to death! I was given back my freedom after the brain surgery and I don't want to ever go back to depending on others to help me out. I was so stubborn that I would never ask for help. lol!
Yes, I agree I need to find another neurologist but right now I'm keeping this to myself, my husband would be watching me like a hawk! lol! If it happens again in the next several months I will go to another neurologist. My head is still tender from the brain surgery and that was almost 11 year ago. Is there a chatroom here?

God Bless ~
 
Wondering if I should go back to a neurologist. I had an appt a couple of weeks ago with a neurologist that I have seen for about 2 years, but after my last appt with him I decided not to go back to him. I was having some crazy symptoms that he just laughed off and did not take seriously at all! I was having some like shocking feelings in my legs and sometimes stomach and I was concerned it could be that my seizures could be tring to start up again. He just said come back in a month. UGH! So now I am seeing a pain specialist for my migraines, but he can't treat me for epilepsy..I'm just falling apart and no one around me knows! Guess I'm good at hiding things because I always tried to hide my epilepsy.

Definitely go back to a neurologist if you're having auras again. If your current neuro is laughing about your symptoms, then time to find another one. Find a neurologist who is familiar with migraines, also. Plus one who is informed about epilepsy/brain surgery, an epilpetologist. And trying to hide epilepsy isn't going to help the problem, either. It only hinders it.

I had a left temporal lobectomy and was seizure free for only 14 months. The seizures came back with vengeance. I started having TC's in addition to CP's. Plus migraines and deep, deep depression! My neuro had me try over 10 AED's, to no avail. I couldn't have a 2nd surgery because it could make me literally speechless and really hinder my memory. I have the VNS now and in April I had the 3rd VNS surgery.

Get help before your auras increase. Good luck!
 
Last edited:
The problem with the partials is they start with the fear in my stomach then move up the right side of my body my head turns to the right. my right leg draws up and all the while my eyes are blinking and I making lip smacking noises and some times my tongue sticks out The epileptolgist at first he thought it was PNES finally after an ambulatory eeg in November the video caught my seizure and that's when he told me they were consistent with Focal seizures and probably coming from the frontal lobe which a lot of times is misdiagnosed as PNES. I also made a mistake I take 150mg of lomotrigine twice a day. partial is such a broad diagnosis It's not just the fear but what else the right side of my body is doing. The aura by its self probably wouldn't constitute surgery. Migraines and epilepsy are very closely related. The both can have an Aura. Maybe the neurologist is trying to rule that out first. But being like me already having surgery and going seizure free for a while me it was 15 years. Its a tough fight because you have to prove to the dr. that it is real. I went through 4 EEGs last year none of my seizures were showing on the eeg. Since there was evidence then to him there was no seizure. It took 8 months when finally The Ambulatory eeg changed his mind about what was going on with me. So I guarantee your dr. will want to rule out migraines then he'll will rule out PNES. Then you'll have his attention. I knew what was going on with me was not in my mind and I had to fight to get them to finally agree. I hope that's not what you have to go through but I just wanted to let you know my story and what I've gone through.
Good Luck
 
I was given back my freedom after the brain surgery and I don't want to ever go back to depending on others to help me out. I was so stubborn that I would never ask for help. lol!

I felt that way until I had my first TC seizure after surgery! I didn't want to ask others for help, either. Plus I lived 1500 miles from family and was married to a pilot. And we had two children. So I had to swallow my pride and ask for help. Unfortunately, life is not always what we want.
BTW, my name is Cindy, too.
 
You are so right Cindy,life throws us curves at times and we walk through storms. I'm praying this is nothing, but it was one of the strongest auras I've had in about a year. Just makes you think if it was scar tissue that caused the seizures the first time, then has the scar tissue form enough to cause me more problems now. I don't know that I would go through another brain surgery. I dealt with terrible depression after my brain surgery for almost 2 years. The neurosurgeon told me it was a side effect from the surgery. I went through a craintomy to fix a huge indentation on my right temple from the brain surgery, it was a sucess and looks good. Are any of you on anxiety meds? I don't want to take more drugs, but sometimes the anxiety can get to you. I try to eat as many organic foods as possible and stay away from aspartame and al the artifical sweetners that are bad for you to begin with. Have became a health nut! LOL!

Thank you so very much for answering some of my questions and helping me to know I'm not going crazy and this is something I should for sure take seriously. Bless all of you!!

Cindy~
 
I take an anti-depressant along with two AED's. Plus thyroid meds and diabetes.
 
Hi Cindy,
Welcome to CWE, congrats on going so long seizure free but sorry to see you are experiencing auras again.
I agree with the others, if you are noticing you are having to many auras it might be best to let your neurologist know.

I had a left temporal lobectomy in March 2011.
The specialists who were involved in my surgery are confident that the surgery would help me be long term seizure free but I know there is still a chance I may have a seizure one day but hopefully it wont be for a very long time.
I have been seizure free since the surgery & the only issues I have had is sometimes my head would feel a little bit strange which would usually only last a couple of seconds. I have always had problems with handling stress & the 1st time I had this funny feeling was September last year (18 months post surgery) when I was working in a job which caused me alot of stress. My neurologist believes that these funny feelings I sometimes get in my head aren't auras or seizures but my brains way of letting me know it's stressed.
 
Last edited:
returning seizures

:agree: Hi Everyone.
I have TLE. and my like you Pita and Cindy starts deep in my stomach and rises up fear dejvu. I call them my scary feelings.
I had surgery 2003 and still have aura's.
I happy to be here because I always thought that I was weird. But not here
thanks for all your posts.
It really helps me.
 
Nelly, what meds do you take for the auras? My neuro surgeon thought I should stay on one anti convustant, which is lamictal for me. Nelly, how often do you have the auras? mine are not often, but when I do have them I know for sure it's an aura, because it fealt like it did before my surgery in 2002. Have you ever ask your neuro why you still have auras after having brain surgery. I thouht once they got the scar tissue out then that would be it! But I'm guessing more scar tissue has formed but just not as bad?

Blessings ~ Cindy
 
My neurologist said that I would have auras but not as frequent or strong. After surgery the Dr kept me on Keppra. My Dr took me off that because of the side-effects. (thought I was going crazy). Then put back on lamictal. I had to request it. I now take 200mg 2X daily. 6mo ago I was put on Vimpat. I also take an anti-depressant Effexer 225mg daily. I will always have scar tissue one Dr. said a scar is a scar. But I do wonder.... is there a way to repair scars ?
 
Hi, I was just wondering if anyone else has had a right temporal lobectomy and still have auras but no seizures.

welcome cindy,
sorry to hear your seizures have returned. i'm going in july for a left amygdalo-hippocampectomy and am horrified at the thought of it not working. i want to make sure you know though (and couldn't agree with cint more for this reason for starters, that someone needs to know, someone who is around you lots like your husband).... an 'aura' is a seizure. it drives me batty that the word aura is even used anymore. an aura is a simple partial seizure, the two words are very interchangeable it just depends on who you're talking with. properly said, an aura/simple partial is truly an aura if it preceeds a stronger seizure, hence the name. however if it's on its own it is still a simple partial seizure.
the fact that they've come back should be addressed with a neuro immediately. not only have i had E for 19 years and am having surgery, but simple partials (of which i've had 1000+) are my life's nemesis. i HATE them, and don't know what i'll do if they return after. can take a grand mal here and there like nothing - it's these bastards i want gone. trust me they're not to be messed with, please don't keep it to yourself one more day, that really is playing with fire.
best of luck and keep us posted.
 
Thank you gtowngirl. I know your right, guess I just don't want to face it. Taking
200mg of lamictal twice a day. Can't imagine my freedom being taken away again!
 
Back
Top Bottom