Should I have surgery???

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Hi everyone. I have tonic colonic grand mail seizures. I have them, usually, only every few months. Sometimes more frequently, but sometimes less too... I have a cavernous angioma in the right frontal lobe. I’m taking oxtellar ox (oxcarbazapine) 900 mgs. And onfi (oxcarbazam) 5 mgs. I feel tired and crazy (tired but wired), very anxious, constantly afraid of having a seizure... I haven’t driven for 10 years. I am 39. My family and loved ones wish for me to “just have the surgery”, wishing and hoping that this would cure it all. My neuro has said that it looks able to be removed. First, I’d have to have tests like the WADA test and other invasive painful proceeders. Doc has said that I have a great chance of the surgery curing my seizures, but, no garentees; I might still have some, and I’d likely have to remain in these horrible medications. My question is this: should I continue to try to reduce the frequency and severity of my seizures by life style improvements and trying to find a better med... or should I “just have the surgery”? And hope for the best. My thought is that if there is ANY way to not have brain surgery, I should do that. Given the infrequency of mine, idk if such a major procedure is reasonable. Any thoughts are appreciated!!! Especially if you are on a good med that I ought to perhaps try first, and/or if you have gone through surgery. Thank you. Good luck to you all.

Comments

Hello beesknees:Surgery is

Submitted by Jazz101 on Wed, 2018-10-10 - 19:13

Hello beesknees:Surgery is about looking at the entire picture, meaning factoring in that there is no guarantee that you will be seizure free for life. Now that doesn't mean it can't happen. Some people were able to walk away seizure free from surgery way, way, back when relative to now. So I just want you to know that too.As you can see your doctor said you had a "great chance" of being seizure free. In neurology/neurosurgery, a doctor will never be able to say to someone that they know with certainty that they will be seizure-free for life post surgery. And that's because the brain is quite unique. Seizures or no seizures, the brain does undergo changes with time. As a result, when you couple that with the fact that seizures were already an issue on the table, well, it's just something to factor in. After all, sometimes individuals who never had seizures can have it show up later in life; sometimes in their 50s or 60s or even later. I underwent surgery remaining practical about the fact that, as my neurosurgeon put it, "the brain is unique and we learn new things about it everyday." That means that just has neurology keeps advancing, an it really has, we still have to be practical about the fact that seizures can show up again. As long as a patient can be practical about that then surgery is much easier to go ahead with. After all, if you are able to say to yourself that while you hope the seizures won't show up again, you will still be okay if they do. That means you don't find yourself in a position saying; "I wish I hadn't gone ahead with surgery" or "I regret having surgery." Should seizures show up again in my case, I can tell you that regret would not be on my list. And I can say that because my neurosurgeon was able to do much more than we initially felt was possible. Take for example the internal EEG. That's as close as you get to the brain ahead of surgery. And while we were able to point out with clarity what areas were seizure related, we were unable to say whether three of those areas were a surgical go ahead. And that's because when we did the language mapping with those points in place, the result weren't crystal clear given language and speech and memory were so close. As a result my neurosurgeon told me I had the option of repeating the language mapping, except during surgery, to see if it was safe to remove any of those three areas with minimal interference to speech. The other areas had already been approved for surgery.I agreed to it because I felt it was worth it. And that is what we did. They woke me up in during surgery and the language mapping team were there to repeat the tests. As a result I was answering a host of questions during actual surgery, where my neurosurgeon was able to actually see and touch those areas while I spoke to see if any of the three areas were good for surgery.As a result, in addition to the areas that had already been approved for surgery, we were also able to remove two-and-a-half of the three areas that initially failed the test. After seeing how much my neurosurgeon was able to brief me on the specifics on a day to day basis prior to surgery, and how he was able to take that extra step, well, I am pretty comfortable with the outcome, meaning seizures or no seizures down the road. So the question to you is this. Will you be able to say you are comfortable with the outcome, whichever way it goes, down the road? If you will be able to say you are, then that is what matters most. If you feel the surgery is something you'll regret, then I am not sure if you are ready. After all, as Robert Powell of Marketwatch said in his letter to his sons; "None of us can afford to live with too much regret." Seizures don't apply to Powell or his sons. He was just making a comment about how pricy regret can be. Take your time. Ask questions. Surgery isn't an overnight thing. It certainly wasn't an overnight decision on my part. You have to be comfortable. That means comfortable with your neurologist and your neurosurgeon and whether you can move on even if the activity shows up down the road again. Best Regards

Hello beesknees:Surgery is about looking at the entire picture, meaning factoring in that there is no guarantee that you will be seizure free for life. Now that doesn't mean it can't happen. Some people were able to walk away seizure free from surgery way, way, back when relative to now. So I just want you to know that too.As you can see your doctor said you had a "great chance" of being seizure free. In neurology/neurosurgery, a doctor will never be able to say to someone that they know with certainty that they will be seizure-free for life post surgery. And that's because the brain is quite unique. Seizures or no seizures, the brain does undergo changes with time. As a result, when you couple that with the fact that seizures were already an issue on the table, well, it's just something to factor in. After all, sometimes individuals who never had seizures can have it show up later in life; sometimes in their 50s or 60s or even later. I underwent surgery remaining practical about the fact that, as my neurosurgeon put it, "the brain is unique and we learn new things about it everyday." That means that just has neurology keeps advancing, an it really has, we still have to be practical about the fact that seizures can show up again. As long as a patient can be practical about that then surgery is much easier to go ahead with. After all, if you are able to say to yourself that while you hope the seizures won't show up again, you will still be okay if they do. That means you don't find yourself in a position saying; "I wish I hadn't gone ahead with surgery" or "I regret having surgery." Should seizures show up again in my case, I can tell you that regret would not be on my list. And I can say that because my neurosurgeon  was able to do much more than we initially felt was possible. Take for example the internal EEG. That's as close as you get to the brain ahead of surgery. And while we were able to point out with clarity what areas were seizure related, we were unable to say whether three of those areas were a surgical go ahead. And that's because when we did the language mapping with those points in place, the result weren't crystal clear given language and speech and memory were so close. As a result my neurosurgeon told me I had the option of repeating the language mapping, except during surgery, to see if it was safe to remove any of those three areas with minimal interference to speech. The other areas had already been approved for surgery.I agreed to it because I felt it was worth it. And that is what we did. They woke me up in during surgery and the language mapping team were there to repeat the tests. As a result I was answering a host of questions during actual surgery, where my neurosurgeon was able to actually see and touch those areas while I spoke to see if any of the three areas were good for surgery.As a result, in addition to the areas that had already been approved for surgery, we were also able to remove two-and-a-half of the three areas that initially failed the test. After seeing how much my neurosurgeon was able to brief me on the specifics on a day to day basis prior to surgery, and how he was able to take that extra step, well, I am pretty comfortable with the outcome, meaning seizures or no seizures down the road. So the question to you is this. Will you be able to say you are comfortable with the outcome, whichever way it goes, down the road? If you will be able to say you are, then that is what matters most. If you feel the surgery is something you'll regret, then I am not sure if you are ready. After all, as Robert Powell of Marketwatch said in his letter to his sons; "None of us can afford to live with too much regret." Seizures don't apply to Powell or his sons. He was just making a comment about how pricy regret can be. Take your time. Ask questions. Surgery isn't an overnight thing. It certainly wasn't an overnight decision on my part. You have to be comfortable. That means comfortable with your neurologist and your neurosurgeon and whether you can move on even if the activity shows up down the road again. Best Regards

Hello beesknees:Surgery is about looking at the entire picture, meaning factoring in that there is no guarantee that you will be seizure free for life. Now that doesn't mean it can't happen. Some people were able to walk away seizure free from surgery way, way, back when relative to now. So I just want you to know that too.As you can see your doctor said you had a "great chance" of being seizure free. In neurology/neurosurgery, a doctor will never be able to say to someone that they know with certainty that they will be seizure-free for life post surgery. And that's because the brain is quite unique. Seizures or no seizures, the brain does undergo changes with time. As a result, when you couple that with the fact that seizures were already an issue on the table, well, it's just something to factor in. After all, sometimes individuals who never had seizures can have it show up later in life; sometimes in their 50s or 60s or even later. I underwent surgery remaining practical about the fact that, as my neurosurgeon put it, "the brain is unique and we learn new things about it everyday." That means that just has neurology keeps advancing, an it really has, we still have to be practical about the fact that seizures can show up again. As long as a patient can be practical about that then surgery is much easier to go ahead with. After all, if you are able to say to yourself that while you hope the seizures won't show up again, you will still be okay if they do. That means you don't find yourself in a position saying; "I wish I hadn't gone ahead with surgery" or "I regret having surgery." Should seizures show up again in my case, I can tell you that regret would not be on my list. And I can say that because my neurosurgeon was able to do much more than we initially felt was possible. Take for example the internal EEG. That's as close as you get to the brain ahead of surgery. And while we were able to point out with clarity what areas were seizure related, we were unable to say whether three of those areas were a surgical go ahead. And that's because when we did the language mapping with those points in place, the result weren't crystal clear given language and speech and memory were so close. As a result my neurosurgeon told me I had the option of repeating the language mapping, except during surgery, to see if it was safe to remove any of those three areas with minimal interference to speech. The other areas had already been approved for surgery.I agreed to it because I felt it was worth it. And that is what we did. They woke me up in during surgery and the language mapping team were there to repeat the tests. As a result I was answering a host of questions during actual surgery, where my neurosurgeon was able to actually see and touch those areas while I spoke to see if any of the three areas were good for surgery.As a result, in addition to the areas that had already been approved for surgery, we were also able to remove two-and-a-half of the three areas that initially failed the test. After seeing how much my neurosurgeon was able to brief me on the specifics on a day to day basis prior to surgery, and how he was able to take that extra step, well, I am pretty comfortable with the outcome, meaning seizures or no seizures down the road. So the question to you is this. Will you be able to say you are comfortable with the outcome, whichever way it goes, down the road? If you will be able to say you are, then that is what matters most. If you feel the surgery is something you'll regret, then I am not sure if you are ready. After all, as Robert Powell of Marketwatch said in his letter to his sons; "None of us can afford to live with too much regret." Seizures don't apply to Powell or his sons. He was just making a comment about how pricy regret can be. Take your time. Ask questions. Surgery isn't an overnight thing. It certainly wasn't an overnight decision on my part. You have to be comfortable. That means comfortable with your neurologist and your neurosurgeon and whether you can move on even if the activity shows up down the road again. Best Regards

Hi I think any kind of brain

Submitted by wmi3@aol.com on Fri, 2018-10-12 - 07:04

Hi I think any kind of brain surgery no matter what for is always a gamble .I personally would never have it even though I have had Clonic Tonic epilepsy for 21 years .I have had something like 10 changes of meds and many increases but I would rather put up with it all rather than have surgery .But its just a personal choice and we are all different .I lead a pretty good lifestyle and always have so I don't think its about that .Except of course if you lead a really bad lifestyle .I don't have any helpful things to say so I am sorry about that but I truly wish you well

I can understand the fear of

Submitted by Lurch69 on Fri, 2018-11-23 - 21:42

I can understand the fear of surgery, and desire to avoid it. It is a major risk that needs you to weigh the risks against the benefits. My decision to have surgery came after over thirty years of trying countless cocktails of medication, and attempting the VNS. None were that effective, and any impact was typically temporary. These medications were selected, by my neurologist, based on their effectiveness with the types of seizures I had. The 2 years before opting for surgery, I had fallen numerous times, bringing head abrasions, stretched muscles in my back, dizziness, extremely sore joints, and others. Although each of us is different, the screening for me took about six months. They included an in-hospital video EEG, an MRI, and a neuro-psych test. From these, a team of neuro surgeons and neurologists analyzed the results. My eligibility was because of the focal point of the seizure activity.Ask your neurologist about surgery, if you are seriously considering it. Be prepared with every question you may have about the procedure. As you discuss it, more questions are likely to come up. You need as much knowledge as possible when considering the type of procedure being considered.I wish you well.