Hi, I'm new to online forums for epilepsy. I've had tonic-clonic seizures and auras for 32 years now. More info in my bio. I'm looking for answers from anyone who has had left temporal lobe space occupying lesions removed. Tell me how it went, why did you go for surgery, was there an option? I currently have the option for surgery, and as I'm 40+ now I'm facing the reality that ongoing seizures however infrequent could be causing me progressive damage to my brain, which I cannot afford! I am an ICU nurse, and do not want to lose my job because I can't function as I should. Anyway, thanks for your ideas/experiences. (anyone else out there who works in healthcare professions?)
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Courtneysmum
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Hi & welcome! I'm new too.. Unable to help u sorry but hope others will be able to share their stories with u.
Do u mind me asking about your auras? How long they last & what kind of things u experience ??
Do u mind me asking about your auras? How long they last & what kind of things u experience ??
When I was a kid, they consisted of what I could only describe as a "grey" feeling, and de ja vu (which was actually very interesting) which was invariably followed by either a grand mal seizure or absence seizure. Terminology has changed since then 
Now, I have a more extended time of my "auras" which after a lot of research I now know are not just precursors to a seizure, but are actual seizures themselves. The aura now goes for about three to five minutes - I have time to have a drink, because my mouth also dries up like crazy, and walk around to try and shake it off. The first thing I usually do is to empty my bladder - for obvious reasons - and then grab someone to take to a secluded/safe area. By the time the aura is in "full swing" I have lost all perception of the right side visual field, and I know that this is the point of no return. So in a nutshell, I suppose my seizures are much more varied now than what they were 30 years ago, and if I look at it properly, are more frequent too (if you count the "auras" that did not progress to tonic-clonic seizures). - Google "kindling" and "auras" for more detail on this.
Now, I have a more extended time of my "auras" which after a lot of research I now know are not just precursors to a seizure, but are actual seizures themselves. The aura now goes for about three to five minutes - I have time to have a drink, because my mouth also dries up like crazy, and walk around to try and shake it off. The first thing I usually do is to empty my bladder - for obvious reasons - and then grab someone to take to a secluded/safe area. By the time the aura is in "full swing" I have lost all perception of the right side visual field, and I know that this is the point of no return. So in a nutshell, I suppose my seizures are much more varied now than what they were 30 years ago, and if I look at it properly, are more frequent too (if you count the "auras" that did not progress to tonic-clonic seizures). - Google "kindling" and "auras" for more detail on this.
Courtneysmum
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Wow interesting!
My daughter also looses her right visual feild. Although this tends to last almost an hour
My daughter also looses her right visual feild. Although this tends to last almost an hour
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Welcome!
I dont have experience when it comes to lesions, but I have left temporal lobe epilepsy. I havnt had any surgeries done, but have just been on medications all my life to control the seizures. I hope someone here can help better answer your question.
I dont have experience when it comes to lesions, but I have left temporal lobe epilepsy. I havnt had any surgeries done, but have just been on medications all my life to control the seizures. I hope someone here can help better answer your question.
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Hi mjain2, welcome to CWE!
We do have a number of members who are in the the healthcare field -- hopefully they'll chime in.
I assume that you've tried all the meds and that they aren't providing seizure control. As you know, surgery is often considered when the epilepsy is considered refractory and a discreet seizure focus can be identified. Before you go down that path you might want to look into neurofeedback. It also has helped some folks with refractory seizures. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/
Best,
Nakamova
We do have a number of members who are in the the healthcare field -- hopefully they'll chime in.
I assume that you've tried all the meds and that they aren't providing seizure control. As you know, surgery is often considered when the epilepsy is considered refractory and a discreet seizure focus can be identified. Before you go down that path you might want to look into neurofeedback. It also has helped some folks with refractory seizures. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/
Best,
Nakamova
Eli
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Hello and welcome! I've seen several people here talk about having had surgery so you should get some good feedback.
As my epileptologist recommended surgery for me as the next and only option at this time and given that my husband and I are talking more about me having surgery I will also be watching for feedback. I have refractory mtle but still appreciate the info.
As my epileptologist recommended surgery for me as the next and only option at this time and given that my husband and I are talking more about me having surgery I will also be watching for feedback. I have refractory mtle but still appreciate the info.
Eli
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I've heard you guys talk about this but never researched it, ty for posting nakamova!