Right temporal lobe surgery

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I am 40 years old and have right temporal lobe epilepsy due to a small malformation in my right hippocampus. My neurologist and neurosurgeon think I should do the surgery because medication has become less effective in controlling my seizures over the last few years. I am reticent to keep adding medications due to cognitive side effects. They say the cure rate is 80-90% in my case and it is in my right temporal lobe and my language is in the Left. The neurosurgeon said I could wait to do it, as it is not imperative, but in his experience I will eventually keep failing on medications and have to do it anyway. I read that this surgery is more effective in people who are younger (I am 40 so not exactly young but not old either). And who have not gotten to the point where the epilepsy is intractable. I do plan to get a second opinion, but the surgeon I met with is the best in my state for this particular surgery. I'm looking to hear about people's experiences with this particular surgery. Did you suffer any short and long term impairments in language, memory, vision, etc? Did it completely eliminate seizures? How was the recovery as far as functioning and pain? (I have two young children and am pretty worried about being completely unable to care for them for an extended period of time) When were you able to go back to work? (I have a mentally demanding job that requires excellent language skills, memory, and critical thinking) Thank you in advance for any perspectives on this!

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I had this surgery at age 41

Submitted by RTL on Thu, 2019-07-11 - 21:02

I had this surgery at age 41 and have documented my thoughts and experiences here:https://drive.google.com/file/d/0B4W1q98dcPYKT0hfSTI2N3ZuYjA/viewHope it helps you out.Kevin

Thank you Kevin! This is

Submitted by acorona on Fri, 2019-07-12 - 13:12

Thank you Kevin! This is really helpful. I appreciate your thoughtful, thorough account of your experience, and I'm glad you feel it was the right decision for you. I'm really scared of dying. I have little kids and I want to cry every time I think about the possibility of not waking up from the surgery. I know the risk is small, but it's brain surgery!!! Thank you again.

Hello Audra:Like Kevin, I

Submitted by Jazz101 on Fri, 2019-07-12 - 17:47

Hello Audra:Like Kevin, I also underwent neurosurgery in that age-range; 44 for me. About the fear of dying? I can understand the concern Audra. But with neurosurgery it's not just the neurologist who is there. They also have devices that monitors you to make sure you are functioning. A team keeps an eye on that. Hence, any emergency and they pretty much know what to do. I can understand why anyone would see neurosurgery as a bit scary But if this helps Audra, I had to undergo a repeat of my language mapping during the actual surgery. As a result they had to put me to sleep to fully expose the brain, and then wake me up with my brain exposed to the neurosurgeon so he could see and touch the three areas we weren't sure we could remove, given they were so close to language and speech.As a result I was answering a host of questions during surgery while my neurosurgeon was making contact with those three areas to see how my speech was being affected as I was answering the questions.So, as you can see, brain surgery naturally sounds scary. But it isn't as scary as it may seem. After all, I was awake and responding vocally to questions while my neurosurgeon was making contact with those three areas that looked surgically untouchable given their proximity to language and speech. But after quite a few minutes awake while my neurosurgeon was touching those three areas as I was answering a host of question the team tossed my way, he was able to conclude that it was safe to remove 2.5 of the 3 areas that looked untouchable, given their proximity to language and speech, in addition to the other areas that had passed the initial language mapping test.In life everyone, Epilepsy or no Epilepsy, stands a tiny percent chance of dying via simple activity that's not even close to surgery. Nonetheless, as you can see, many don't. The point is this. Contextualize surgery Audra. Yes it's getting into your brain and removing areas. But the upside is that it's not being done by your neighbor, who's pretending he or she is a surgeon. :) That and the fact that you have a team of people monitoring your features throughout the process.I definitely get your concern Audra. As a result the decision will come down to factoring in things while at the same time contextualizing them. I walked away from surgery the first time, not because I was scared of surgery, but because I was getting mixed messages from the team about the surgery. As a result I walked away then. Hey, no touching the brain if you are so uncertain. So, as you can see, even someone like me has walked away from surgery but it wasn't because of surgery; it was because of the team. Any mixed messages from your team while planning neurosurgery is enough to make anyone walk away.I was able to find a great team later. My neurosurgeon briefed me on a daily basis while I was undergoing the intracranial EEG. He told me what they found and what the plan was. This is how eventually it was so easy for me to say yes to the repeat of the language mapping test, expect during surgery, when he can see and touch those three areas as I spoke. He had earned my confidence. He even showed me pictures post surgery of the areas that were removed, explaining things right down to the "T". My advice to you is to take your time. No rushed decision. Ask a lot of questions, which was/is my style; don't be afraid to get something explained to you twice if you don't get it the first time; and then contextualize everything--your team; how devoted they sound to their patients; etc. These are things that make decisions easier. Best Regards

Hello Audra:Like Kevin, I also underwent neurosurgery in that age-range; 44 for me. About the fear of dying? I can understand the concern Audra. But with neurosurgery it's not just the neurologist who is there. They also have devices that monitors you to make sure you are functioning. A team keeps an eye on that. Hence, any emergency and they pretty much know what to do. I can understand why anyone would see neurosurgery as a bit scary But if this helps Audra, I had to undergo a repeat of my language mapping during the actual surgery. As a result they had to put me to sleep to fully expose the brain, and then wake me up with my brain exposed to the neurosurgeon so he could see and touch the three areas we weren't sure we could remove, given they were so close to language and speech.As a result I was answering a host of questions during surgery while my neurosurgeon was making contact with those three areas to see how my speech was being affected as I was answering the questions.So, as you can see, brain surgery naturally sounds scary. But it isn't as scary as it may seem. After all, I was awake and responding vocally to questions while my neurosurgeon was making contact with those three areas that looked surgically untouchable given their proximity to language and speech. But after quite a few minutes awake while my neurosurgeon was touching those three areas as I was answering a host of question the team tossed my way, he was able to conclude that it was safe to remove 2.5 of the 3 areas that looked untouchable, given their proximity to language and speech, in addition to the other areas that had passed the initial language mapping test.In life everyone, Epilepsy or no Epilepsy, stands a tiny percent chance of dying via simple activity that's not even close to surgery. Nonetheless, as you can see, many don't.  The point is this. Contextualize surgery Audra. Yes it's getting into your brain and removing areas. But the upside is that it's not being done by your neighbor, who's pretending he or she is a surgeon. :) That and the fact that you have a team of people monitoring your features throughout the process.I definitely get your concern Audra. As a result the decision will come down to factoring in things while at the same time contextualizing them. I walked away from surgery the first time, not because I was scared of surgery, but because I was getting mixed messages from the team about the surgery. As a result I walked away then. Hey, no touching the brain if you are so uncertain.  So, as you can see, even someone like me has walked away from surgery but it wasn't because of surgery; it was because of the team. Any mixed messages from your team while planning neurosurgery is enough to make anyone walk away.I was able to find a great team later. My neurosurgeon briefed me on a daily basis while I was undergoing the intracranial EEG. He told me what they found and what the plan was. This is how eventually it was so easy for me to say yes to the repeat of the language mapping test, expect during surgery, when he can see and touch those three areas as I spoke. He had earned my confidence. He even showed me pictures post surgery of the areas that were removed, explaining things right down to the "T". My advice to you is to take your time. No rushed decision. Ask a lot of questions, which was/is my style; don't be afraid to get something explained to you twice if you don't get it the first time; and then contextualize everything--your team; how devoted they sound to their patients; etc. These are things that make decisions easier. Best Regards

Hello Audra:Like Kevin, I also underwent neurosurgery in that age-range; 44 for me. About the fear of dying? I can understand the concern Audra. But with neurosurgery it's not just the neurologist who is there. They also have devices that monitors you to make sure you are functioning. A team keeps an eye on that. Hence, any emergency and they pretty much know what to do. I can understand why anyone would see neurosurgery as a bit scary But if this helps Audra, I had to undergo a repeat of my language mapping during the actual surgery. As a result they had to put me to sleep to fully expose the brain, and then wake me up with my brain exposed to the neurosurgeon so he could see and touch the three areas we weren't sure we could remove, given they were so close to language and speech.As a result I was answering a host of questions during surgery while my neurosurgeon was making contact with those three areas to see how my speech was being affected as I was answering the questions.So, as you can see, brain surgery naturally sounds scary. But it isn't as scary as it may seem. After all, I was awake and responding vocally to questions while my neurosurgeon was making contact with those three areas that looked surgically untouchable given their proximity to language and speech. But after quite a few minutes awake while my neurosurgeon was touching those three areas as I was answering a host of question the team tossed my way, he was able to conclude that it was safe to remove 2.5 of the 3 areas that looked untouchable, given their proximity to language and speech, in addition to the other areas that had passed the initial language mapping test.In life everyone, Epilepsy or no Epilepsy, stands a tiny percent chance of dying via simple activity that's not even close to surgery. Nonetheless, as you can see, many don't. The point is this. Contextualize surgery Audra. Yes it's getting into your brain and removing areas. But the upside is that it's not being done by your neighbor, who's pretending he or she is a surgeon. :) That and the fact that you have a team of people monitoring your features throughout the process.I definitely get your concern Audra. As a result the decision will come down to factoring in things while at the same time contextualizing them. I walked away from surgery the first time, not because I was scared of surgery, but because I was getting mixed messages from the team about the surgery. As a result I walked away then. Hey, no touching the brain if you are so uncertain. So, as you can see, even someone like me has walked away from surgery but it wasn't because of surgery; it was because of the team. Any mixed messages from your team while planning neurosurgery is enough to make anyone walk away.I was able to find a great team later. My neurosurgeon briefed me on a daily basis while I was undergoing the intracranial EEG. He told me what they found and what the plan was. This is how eventually it was so easy for me to say yes to the repeat of the language mapping test, expect during surgery, when he can see and touch those three areas as I spoke. He had earned my confidence. He even showed me pictures post surgery of the areas that were removed, explaining things right down to the "T". My advice to you is to take your time. No rushed decision. Ask a lot of questions, which was/is my style; don't be afraid to get something explained to you twice if you don't get it the first time; and then contextualize everything--your team; how devoted they sound to their patients; etc. These are things that make decisions easier. Best Regards