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Old 06-30-2017, 02:38 PM
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Is there any 100% (or at least 90%!) safe surgery for occipital lobe-based epilepsy?


I've been suggested surgery for my epilepsy before. I would have had it in 2015 were it not for my family cutting up rough. Problem is, my epilepsy is based in my occipital lobe, and occipital lobe surgeries (I think the ones I suggested were a resection and a partial leucotomy?) are fraught with trouble, or, at least, they were in 2015. The doctors told me there was at least half a chance of vision trouble, and my eyesight is terrible as it is, and a significant risk of blindness.

It's getting to the point, though, that I'm sick of being sick and I'm sick of taking meds which make me sick in other ways. My GP wants me to stop taking one of my meds, which I use off-label as a rescue medication (the docs don't know that, but luckily I live with a family member who's prescribed the same thing p.r.n. for alcohol withdrawal and lets me use his to make up my baseline dose), by the end of the year, and wants to up my Lyrica, which I've found, from trying to use it as a rescue med in the past, makes me outright delirious above 300mg, as well as making me drool so badly that nothing helps. I take hyoscine for the dribbly side effects of another med, but that doesn't help at all with the drooling from too much Lyrica. I'm exhausted with this.

So, is there any safe, or safe-ish, surgery for occipital lobe epilepsy? I'm planning to give my neurologist a piece of my mind tomorrow morning about how he cancels my appointments all the time and just does not seem to care (the fucker forgets what meds I'm on all the time, and has screwed up my date of birth, middle name, and address before!), and, when I do, I'd like to ask about surgery. There's got to be a permanent fix for this, because I'm at the end of my tether.
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Old 07-02-2017, 06:27 PM
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Hi Myshkin,

I had a right temporal lobectomy back in 1994 and my neurosurgeon remove 75% of my right temporal lobe and all of my right hippocampus and this reduced my seizures 50-60 % but I was told that I may go blind or be paralyzed during the surgery so I got a second opinion before I had the ultra sound surgery.
Correct me if I'm wrong but it doesn't sound like you are to happy with your Dr. I found seeing a Epileptologist at an Epilepsy Center was better than any neurologist I ever saw in my life.
Today they have the gamma knife surgery that can be done and it's much safer than many other surgeries for epilepsy. The Dr. just uses high frequency radio waves which in turn destroys any damage in the brain that's triggering the seizures. You may want to look into that. Also be sure that your neurosurgeon does a visual field test on you before the surgery is done. I wish you the best of luck and May God Bless You!

Sue
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Old 07-02-2017, 10:22 PM
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Sue,

What is a visual test? Is it some kind of simulation?

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Suman
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Old 07-03-2017, 06:24 AM
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Hi Suman,

A visual field test is when a eye Dr. who works with neuros will do detailed testing on a person to see where a persons eyesight is the best and if doing surgery on the person could possible cause loss of sight. They also test you to see how fast the message goes to your brain when you see a certain object and you have to push a button or let them
know verbally when you see the object. I wish you only the best of luck and May God Bless You!

Sue
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Old 07-03-2017, 01:16 PM
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Myshkin,

I had the MRI guided laser ablation surgery on my left temporal lobe in 2015. It is less invasive than the traditional lobectomy. It might be safer for the occipital lobe area, as well. I know of someone who had the laser surgery on the occipital lobe and was told a chance of vision loss, but came out fine. Of course, you would want to do research before making a decision.
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