Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Auras after a right temporal lobectomy after 6 weeks???

Hi everyone.

I'm looking for advice and stories of people who have had a temporal lobectomy. I'm still concerned because after 6 weeks from my surgery I'm still getting auras between 5 - 10 times a day. Some are a little less intense than the ones I had previously and others are about the same.

A bit about me:

- I have mesial temporal schlorosis on the right side
- I have been diagnosed with refractory epilepsy and have tried many meds but none of them seem to work!! Hence the surgery
- My seizures before the surgery weren't severe, they were mainly simple partials or complex partials - now called focal seizures I guess. Either way, they weren't grand mals and if you weren't looking at me at the time I was having one, you wouldn't know.
- Most times when I got an aura, I wouldn't have a seizure. It would probably be every 10th time I had an aura it would turn into a seizure.
- I am currently on Keppra (1500mg bd), Lamictal (200mg bd), Vimpat (200mg bd) and Fyompa (2mg @ night).

I would like to know: if anyone who has had a temporal lobectomy still got auras after and then become seizure and aura free?

My neurosurgeon and neurologist say this is totally normal and it takes a while for the brain to settle down after surgery. It is early days yet I guess. Then again, I have heard stories of people who never get auras again after the surgery.

Everything else they said has come true. They said:
1. There will be partial periferal vision loss but that will be temporary (this cleared up after 2 weeks)
2. There will be headaches afterwards and I will be on prescription painkillers for a couple of weeks (they went after 4 weeks)
3. It's possible I'll have auras and seizures afterwards but that is totally normal and should disappear eventually - between 3 - 12 months is apprently normal (so far no seizures - touch wood!!! but I am still getting auras quite often).

So I'm basically just waiting on the third item to come true now.

Overall, they said I am doing quite well speech and language wise and no other symptoms seem to be present so I am very lucky. They did a very careful mapping of my brain beforehand and said I was dominantly left brained so they did expect me to do quite well. My age too is a factor (I'm 27). They gave me a 90 - 95% success rate of no more seizures!! Although I'm not sure that that included auras - I'm hoping it did!!

I just would like to hear from other peoples experiences with a temporal lobectomy. Whether you had:
- auras afterwards and if so how long afterwards
- no auras afterwards
- seizures afterwards and if so how long afterwards
- no seizures afterwards

Looking forward to hear from you all xo

Comments

Hi Anzella.I had a right

Hi Anzella.I had a right temporal lobectomy in 2006.I have been seizure free since.I was having auras for approx 3 years after.The auras were alot weaker than they were before the op.At first they were half the strength that they before the surgery.As time wore on,they were getting further apart and getting weaker and weaker.In the end they were just strong enough to let me know something was there,and they were very brief.Then they stopped.I also had partial loss of peripheral vision.I had my eyes tested one year after the op.I was told the loss of peripheral vision was so little that I wouldn't notice.It was only the test that picked it up.The doctor that tested my eyes told me my peripheral vision would improve because another part of my brain would learn to take over.I take keppra and tegretol.I stopped tegretol in 2014 because my neuro said it was causing low bone density.I was off it for only a short while before I had 2 strong auras within a few days apart.I started tegretol again.I have not had any problems since.I wish you all the very best in your recovery.  Beetle

Hi beetle, thanks for your

Hi beetle, thanks for your reply. wow 3 years is a long time! I'm glad they cleared up eventually though and at least you have been seizure free :-) If you don't mind me asking, how often and how severe were your seizures before the surgery?

I had simple partial and

I had simple partial and complex partial seizures.I had 2 operations.The first was in 2000.I was seizure free for 2 yrs after.I had no auras in the time after that op.Before the first op, most of my seizures were in my sleep.I used to wake up on the floor.I didn't wake before those seizures.I averaged about 6 seizures per week.When I had seizures while awake,I think I had a little more control over them because I felt them starting.It gave me enough warning to sit or lie down.Once the seizures were over,I could continue on with what I was doing before as though nothing happened.When seizures started 2 years later,they were not occuring as often as they were before the first op.I also had alot more warning.I tried different meds that didn't help.The seizures started getting closer soon before the 2006 op,but still not occuring as often as before 2000 op.I still had the same aura as I did before the first op but it lasted a little longer.I thought this was a good thing because I had olot more time to sit down until the seizure was finished.I didn't have any seizures in my sleep after the first surgery.

I'm 27 as well and underwent

I'm 27 as well and underwent right temporal lobectomy (amygdalohippocampectomy) over 2 years back. Reason was the same- mesial temporal sclerosis, but the cause was unknown. I suffered from complex partials (you're right, the new classification from ILAE now names it as focal seizures http://www.ilae.org/visitors/centre/documents/ClassificationSeizureILAE-...) for 13 years prior to the surgery. Though I had pain in the skull and jaw that took almost 3 months to stop completely, I've never had an aura or a seizure since. I've been on 3 AED's since the last 7-8 years, and now in the process of reducing them. The differences I can feel after the surgery is sensitivity to sound, a slight lack of emotions (anger, fright etc), periods of depression (due to personal/familial factors) and a bad short term memory.

I had it done in 2013 and

I had it done in 2013 and know how hard it is after! We all aren't the same but we can understand and be there for each other. I look back and see how unhappy I was and worry for others but I do know that it has been hard to through  but I have and would love to help you anytime you wish. tjrthe3rd@hotmail.com and we cam phone talk if you wish!

I had it done in 2013 and

I had it done in 2013 and know how hard it is after! We all aren't the same but we can understand and be there for each other. I look back and see how unhappy I was and worry for others but I do know that it has been hard to through  but I have and would love to help you anytime you wish. tjrthe3rd@hotmail.com and we cam phone talk if you wish!

I had it done in 2013 and

I had it done in 2013 and please know that I know its hard for us and some more than others. My mind and thoughts made to a very sad recovery time for me so please know I would love to help you through it if I can. Just e-mail me @ tjrthe3rd@hotmail and we can go from there.

Hi Anon, thanks for sharing :

Hi Anon, thanks for sharing :-) you must be absolutely ecstatic with no auras and seizures again!!! So happy for you :-) :-)I had pain in my jaw too but that's almost gone now. I haven't noticed any depression or short term memory loss though. I'm hoping that because I'm doing so well after the surgery, that doesn't mean it hasn't worked!

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P