Scared of surgery

I have had 2 right temporal lobe operations. I was diagnosed at 18. I also tried alot of different med combinations.I seen my first neurologist for 5 yrs, but I was not getting any better. I then seen a different neurologist who refered me to an epileptologist in 1999. He tried me on a few different meds and put me in hospital for VEEG.                                                  I had the first operation in 2000. I had no seizures for almost 2 yrs. Even though I was having seizures again, I was better than I was before the operation. They were not occuring as often as they were before the operation. My auras were longer than they were before the op. I thought that was a good thing because I had more warning before the seizure started.I was not having seizures in my sleep, which I was having alot of seizures in my sleep before the operation.      The seizures then slowly started to get closer together.I tried more new meds and participated in 2 medication studies which did not help. That was when a second surgery was recommended.  I had the second operation in 2006. That time almost all of my right temporal lobe was removed. Since the second op I have only had a few auras. I had alot of auras in the first few yrs after. The auras then started to occur less often. I still have an aura occasionally, but they are alot weaker and they are very brief compared to before the second operation.   The only thing that the operation affected was that I lost a small part of my visual field on the left. I was told that it was not affected enough to notice. It was the visual field test that picked that up. I had a neuropsychology test 1 yr after operation. The results were good.    My meds are Keppra and Tegretol.I did have a try at stopping Tegretol after I had no auras for over a year.That was under Dr's instructions. I slowly reduced the dose over a month. I then had 2 very strong auras. They were the strongest auras I have had since the second op. So I started Tegretol again.  I am still on the same dose of meds that I was taking before the operation. That is because of the auras.  When my Dr talked about an operation for the first time, he took alot of time to inform me of the details.He did stress to me that it is elective surgery and I should have a good think about it first before he referred me to the neurosurgeon.  I was keen on an operation when my neuro first talked about it. He didn't pressure me into it. He gave me the details and left me with the final decision. At that time I was ready to have a go at anything because I was tired of having side effects from the meds when they were not controlling me.  The decision to have the second operation was easier to make because a had been through it before and knew what to expect during the time of surgery.  If you have an epilepsy foundation nearby, it would be a good thing to see if they can organise for you to personally speak to someone who has been through surgery. Before my first operation, I had met a few people who had been through surgery. I found it was good speaking to people who have been through it before.          I wish you the very best with what ever decision you make.      Beetle

I was 27 ys at time of first op, and 33 yrs at time of second

I have had 2 right temporal lobe operations. I was diagnosed at 18. I also tried alot of different med combinations.I seen my first neurologist for 5 yrs, but I was not getting any better. I then seen a different neurologist who refered me to an epileptologist in 1999. He tried me on a few different meds and put me in hospital for VEEG.                                                  I had the first operation in 2000. I had no seizures for almost 2 yrs. Even though I was having seizures again, I was better than I was before the operation. They were not occuring as often as they were before the operation. My auras were longer than they were before the op. I thought that was a good thing because I had more warning before the seizure started.I was not having seizures in my sleep, which I was having alot of seizures in my sleep before the operation.      The seizures then slowly started to get closer together.I tried more new meds and participated in 2 medication studies which did not help. That was when a second surgery was recommended.  I had the second operation in 2006. That time almost all of my right temporal lobe was removed. Since the second op I have only had a few auras. I had alot of auras in the first few yrs after. The auras then started to occur less often. I still have an aura occasionally, but they are alot weaker and they are very brief compared to before the second operation.   The only thing that the operation affected was that I lost a small part of my visual field on the left. I was told that it was not affected enough to notice. It was the visual field test that picked that up. I had a neuropsychology test 1 yr after operation. The results were good.    My meds are Keppra and Tegretol.I did have a try at stopping Tegretol after I had no auras for over a year.That was under Dr's instructions. I slowly reduced the dose over a month. I then had 2 very strong auras. They were the strongest auras I have had since the second op. So I started Tegretol again.  I am still on the same dose of meds that I was taking before the operation. That is because of the auras.  When my Dr talked about an operation for the first time, he took alot of time to inform me of the details.He did stress to me that it is elective surgery and I should have a good think about it first before he referred me to the neurosurgeon.  I was keen on an operation when my neuro first talked about it. He didn't pressure me into it. He gave me the details and left me with the final decision. At that time I was ready to have a go at anything because I was tired of having side effects from the meds when they were not controlling me.  The decision to have the second operation was easier to make because a had been through it before and knew what to expect during the time of surgery.  If you have an epilepsy foundation nearby, it would be a good thing to see if they can organise for you to personally speak to someone who has been through surgery. Before my first operation, I had met a few people who had been through surgery. I found it was good speaking to people who have been through it before.          I wish you the very best with what ever decision you make.      Beetle