So i'm just now coming to the realization I'm going to have brain surgery in 10 days and need people to just talk to about it. so any takers? i'm 25 and have lived with epilepsy since age 7 I've tried everything from meds to diet to VNS and am currently on Felbatol and Lamictal.
hey everyone
- Thread starter Nickb
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epileric
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I've had neurologists try to convince me to have surgery 3 times. The first time they were going to separate the right & left lobes, the 2nd & 3rd times they wanted to cut off parts of my brain & hope it would stop the seizures.
Of all the times they did that they had no clue what was causing the seizures, they were just going to cut & hope for the best so my personal advice to you is that you make sure they know what they're cutting for.
I can only imagine how scary it must be to get something like that done.
Of all the times they did that they had no clue what was causing the seizures, they were just going to cut & hope for the best so my personal advice to you is that you make sure they know what they're cutting for.
I can only imagine how scary it must be to get something like that done.
Surgery
Hi NickB,
I had the surgery 4 years ago (Right Temporal Lobe Lobectomy) and I can honestly say I WOULD do it again. Although I recently started having nocturnal seizures (4 years later), this doesn't happen to everyone and my seizures are not nearly as bad (no gran mals). My experience from the surgery: I didn't have the headache they promised nor did I have any pain. However, I did experience a number of different things which it would be unfair for me to tell you all of it since you may not experience these things, but I will tell you MOST of my problems after surgery were due to the side effects of the medications, which I didn't realize until much later. The side effects that I had from the surgery itself (the brain side effects) were very few and only lasted for approx. 1 week except for visual memory. I will tell you one brain side effect so you have an idea...I started to rhyme whereas everything I said was in rhymes. Sounds funny and for the 1st couple days it was, but it started to freak me out since I was obviously bugged out and had no clue what to make of it and perhaps I started hallucinating a bit. This only lasted for about a week, but apparently when my neurons were reconnecting they hit the rhyming area of my brain (rhyming comes from the brain and chances are Dr. Suess' rhyming area was very active) NO, I'm not trying to be funny either, but just giving you an example of the weird things that can happen when your neurons begin to reconnect. Obviously this particular thing may not happen to you but if something strange happens don't be so freaked out and at least for me they would only last for approx. one week. In the meantime, take your vitamins since you will need to be strong for recovery and I highly recommend eating very healthy during recovery since it will only speed up your recovery. I will also make sure to be available for you after surgery in case I can be of some help. I was up and walked out of the hospital in 2 days. I felt great for the 1st week or two and then little things started happening, but mainly it was the side effects of all the drugs. They had just started me on the newer anti-epileptic drugs which seem to carry different side effects than the older ones, which I wasn't used to or prepared for. As far as my visual memory I was told prior to surgery that was the problem area (RTL) and today I don't have much of visual memory. It's like being blind in the mind but you get a glimpse. I can no longer do math in my head because I can't visualize the numbers long enough (carry the picture in my mind) to do the math, but I can do it on paper. When I was driving GPS was crucial because we tend to remember landmarks and without visual memory it's nearly impossible and I would get lost going to new places (new places = after surgery). Meeting someone new (after surgery) it takes a while for me to be able to recognize them and I have to see them on a consistent basis otherwise I don't remember them (again, visual memory). BUT, this actually sounds worse then what it really is and to be honest I don't even really notice it or know / remember how my brain used to be as far as visual memory goes. Yes, sometimes people will say Hello and I have no clue that I met them only yesterday, but it's no big deal to say, "I'm sorry, what was your name again?" Also, today we have video cameras, GPS, pocket cameras, etc. that I can pretty much capture visuals for long term use. For ex: I can't really visualize my mom who passed 2 years after surgery BUT I keep a photo close by to see her. I promise it's not as bad as it sounds and it becomes the norm just like anything else. I don't know the surgery you're having so you may not even have a problem with visual memory anyway. Again, I WOULD DEFINITELY do it again and when I recently started having seizures I opted to have surgery again to just get rid of them. To me, it's the easy way out but the doctors insist I try meds to see if they'll work this time since my seizures are not nearly as bad. One other thing...they told me recovery would be approx. 3-6 months. For me it was a good full 2 years with every day gradually getting better. Since it was gradual I never really knew when it ended until one day I realized it was totally behind me. However, I did go back to work during the 2nd year and it was really the 1st year that was difficult (again, every day gradually getting better, but I didn't know it since it was too slow of a process to see BIG results and I was truly expecting to wake up one day and feel 100%, it doesn't work that way. Just trust you're getting better everyday because it's way too gradual and again, mine biggest problems were the side effects of the new meds. Lamicatal - again, it was new to me as well as the side effects. I think if I had stayed on Dilantin which never caused me side effects my recovery would've been 10x easier and shorter. So, I highly recommend taking a drug you're used to and your body is used to). GOOD LUCK and I will keep on the lookout for your posts. I'm new to this site so I don't know how if I can friend you to keep updated but I'll do my best finding you. KelVarQ
Hi NickB,
I had the surgery 4 years ago (Right Temporal Lobe Lobectomy) and I can honestly say I WOULD do it again. Although I recently started having nocturnal seizures (4 years later), this doesn't happen to everyone and my seizures are not nearly as bad (no gran mals). My experience from the surgery: I didn't have the headache they promised nor did I have any pain. However, I did experience a number of different things which it would be unfair for me to tell you all of it since you may not experience these things, but I will tell you MOST of my problems after surgery were due to the side effects of the medications, which I didn't realize until much later. The side effects that I had from the surgery itself (the brain side effects) were very few and only lasted for approx. 1 week except for visual memory. I will tell you one brain side effect so you have an idea...I started to rhyme whereas everything I said was in rhymes. Sounds funny and for the 1st couple days it was, but it started to freak me out since I was obviously bugged out and had no clue what to make of it and perhaps I started hallucinating a bit. This only lasted for about a week, but apparently when my neurons were reconnecting they hit the rhyming area of my brain (rhyming comes from the brain and chances are Dr. Suess' rhyming area was very active) NO, I'm not trying to be funny either, but just giving you an example of the weird things that can happen when your neurons begin to reconnect. Obviously this particular thing may not happen to you but if something strange happens don't be so freaked out and at least for me they would only last for approx. one week. In the meantime, take your vitamins since you will need to be strong for recovery and I highly recommend eating very healthy during recovery since it will only speed up your recovery. I will also make sure to be available for you after surgery in case I can be of some help. I was up and walked out of the hospital in 2 days. I felt great for the 1st week or two and then little things started happening, but mainly it was the side effects of all the drugs. They had just started me on the newer anti-epileptic drugs which seem to carry different side effects than the older ones, which I wasn't used to or prepared for. As far as my visual memory I was told prior to surgery that was the problem area (RTL) and today I don't have much of visual memory. It's like being blind in the mind but you get a glimpse. I can no longer do math in my head because I can't visualize the numbers long enough (carry the picture in my mind) to do the math, but I can do it on paper. When I was driving GPS was crucial because we tend to remember landmarks and without visual memory it's nearly impossible and I would get lost going to new places (new places = after surgery). Meeting someone new (after surgery) it takes a while for me to be able to recognize them and I have to see them on a consistent basis otherwise I don't remember them (again, visual memory). BUT, this actually sounds worse then what it really is and to be honest I don't even really notice it or know / remember how my brain used to be as far as visual memory goes. Yes, sometimes people will say Hello and I have no clue that I met them only yesterday, but it's no big deal to say, "I'm sorry, what was your name again?" Also, today we have video cameras, GPS, pocket cameras, etc. that I can pretty much capture visuals for long term use. For ex: I can't really visualize my mom who passed 2 years after surgery BUT I keep a photo close by to see her. I promise it's not as bad as it sounds and it becomes the norm just like anything else. I don't know the surgery you're having so you may not even have a problem with visual memory anyway. Again, I WOULD DEFINITELY do it again and when I recently started having seizures I opted to have surgery again to just get rid of them. To me, it's the easy way out but the doctors insist I try meds to see if they'll work this time since my seizures are not nearly as bad. One other thing...they told me recovery would be approx. 3-6 months. For me it was a good full 2 years with every day gradually getting better. Since it was gradual I never really knew when it ended until one day I realized it was totally behind me. However, I did go back to work during the 2nd year and it was really the 1st year that was difficult (again, every day gradually getting better, but I didn't know it since it was too slow of a process to see BIG results and I was truly expecting to wake up one day and feel 100%, it doesn't work that way. Just trust you're getting better everyday because it's way too gradual and again, mine biggest problems were the side effects of the new meds. Lamicatal - again, it was new to me as well as the side effects. I think if I had stayed on Dilantin which never caused me side effects my recovery would've been 10x easier and shorter. So, I highly recommend taking a drug you're used to and your body is used to). GOOD LUCK and I will keep on the lookout for your posts. I'm new to this site so I don't know how if I can friend you to keep updated but I'll do my best finding you. KelVarQ
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Hi NickB --
Since you're about to have surgery soon, I imagine you've considered all the options and ramifications and are committed to the procedure. Below is a recent article from the NY Times about a woman who was very happy with the results of her epilepsy surgery:
http://www.nytimes.com/2009/07/09/sports/09ultra.html
I hope your surgery is a great success! Keep us posted.
Best,
Nakamova
Since you're about to have surgery soon, I imagine you've considered all the options and ramifications and are committed to the procedure. Below is a recent article from the NY Times about a woman who was very happy with the results of her epilepsy surgery:
http://www.nytimes.com/2009/07/09/sports/09ultra.html
I hope your surgery is a great success! Keep us posted.
Best,
Nakamova