Hi All,
I haven't been on here for a while, but am wondering if anyone can share their experiences with me regarding grid implant surgery, followed by a temporal lobectomy.
I was diagnosed with left temporal epilepsy about 2.5 years ago. Since diagnosis (following a couple of tonic clonics), I have generally had approx. 5 - 8 complex partials per day (I usually speak gibberish with no memory of the episode. Occasionally, I also experience other 'funny' seizures like crying spontaneously for a few seconds, thinking I hear a 'special' word after which the sensation disappears). I have been on multiple AEDs, and am currently on three at fairly high doses. However, I still have no control.
I have had the pre-surgery work-ups but they have been unable to find the focal point. The doctors know it is in the left temporal region and possibly in my hippocampus.
Anyway, they are proposing that I have grids surgically implanted for a week. During that time they will conduct tests to find the focal point and if safe to do so conduct a left temporal lobectomy and possibly resection of one of my hippocampus. They can admit me in the next 2 - 3 months once I give them the go ahead.
I am pretty terrified by all of this (I've never had stitches, a broken bone, let alone surgery!!) and am wondering if anyone can tell me their experiences of having the grids inserted followed by surgery? Not only am I scared of the surgery itself, I am scared about the week whilst I have the grids - ie. potentially having a tonic clonic and hitting my head with the wires poking out etc.
I'll be having it done at the Royal Melbourne Hospital (in Australia) - so if anyone has any experiences of that hospital I'd be interested also.
Thanks so much!
I haven't been on here for a while, but am wondering if anyone can share their experiences with me regarding grid implant surgery, followed by a temporal lobectomy.
I was diagnosed with left temporal epilepsy about 2.5 years ago. Since diagnosis (following a couple of tonic clonics), I have generally had approx. 5 - 8 complex partials per day (I usually speak gibberish with no memory of the episode. Occasionally, I also experience other 'funny' seizures like crying spontaneously for a few seconds, thinking I hear a 'special' word after which the sensation disappears). I have been on multiple AEDs, and am currently on three at fairly high doses. However, I still have no control.
I have had the pre-surgery work-ups but they have been unable to find the focal point. The doctors know it is in the left temporal region and possibly in my hippocampus.
Anyway, they are proposing that I have grids surgically implanted for a week. During that time they will conduct tests to find the focal point and if safe to do so conduct a left temporal lobectomy and possibly resection of one of my hippocampus. They can admit me in the next 2 - 3 months once I give them the go ahead.
I am pretty terrified by all of this (I've never had stitches, a broken bone, let alone surgery!!) and am wondering if anyone can tell me their experiences of having the grids inserted followed by surgery? Not only am I scared of the surgery itself, I am scared about the week whilst I have the grids - ie. potentially having a tonic clonic and hitting my head with the wires poking out etc.
I'll be having it done at the Royal Melbourne Hospital (in Australia) - so if anyone has any experiences of that hospital I'd be interested also.
Thanks so much!