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Old 09-22-2017, 03:09 PM
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Who did your surgery and how did it go?


I had brain surgery in 1981 to remove an AVM. Now 36years and many medications later, The doctors at Rush University in Chicago say that I'm a good candidate for surgery again. This time the surgery would be a right temporal lobectomy as well as removing part of the hippocampus. The doctors say that I'd have a 70% chance of being seizure free and reducing my meds. I know that many of you have had surgery. Where was yours done and how was the outcome? One of my biggest fears is a change in personality.
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Old 09-26-2017, 03:42 PM
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i was at Rush too, for a VNS tho.

But at Mayo in MN, it was a frontal lobectomy ( i believe) but it was a 2 or 3 stage surgery.

Meaning id have 2 or 3 surgeries, with 4-10wk breaks in between. They also didnt know quite how things would be after one of them. Opening the skull to air and then closing it causes effects.

The possibility of being seizure free - 45%. Possibility of not being able to count to 100, walk, run, dress myself, etc - 35%.

I didnt move any further with it once i heard the low possibility of success vs the low possibility of handicapping side effects.

Last edited by gymrat827; 09-26-2017 at 03:44 PM.
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Old 09-26-2017, 08:56 PM
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I had a surgery at the U of MN, Fairview on my right front temporal lobe and my hippo-campus. I had 4 dr's at the time telling me that I had a very good chance at being seizure-free or my seizures would be reduced 50-60% so I took it. I'm still having them, and I believe I've had a small decrease of seizures, but I'm never aware of when I've had 1 so I can't say for sure.

But because of what they removed I lost most of my short-term memory. My personality and other mental capabilities, I can count, walk, run, take care of myself, dress, bathe, cook, etc. have remained the same.
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Last edited by seizuregirl; 09-26-2017 at 10:44 PM. Reason: corrected the hospital, the dr's, 4 not 5
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Old 09-27-2017, 10:49 AM
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Thanks, It seems like your surgery is like what they are proposing for me. They won't speculate on my short term memory until after a Wadda test. Just out of curiosity what type of seizures do you have and how often?
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Old 09-27-2017, 08:25 PM
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I have complex-partials and tonic-clonics, I can't tell you how often I have them because when 1 does, to me, no time has passed, it's like I've only blinked. But anyone who has witnessed 1 will let me know after it happened.
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Old 09-28-2017, 01:55 PM
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My surgery was done in the Great White North, aka Canada, so the details won't mean a lot. Other than that, here's how it went:

drive.google.com/file/d/0B4W1q98dcPYKT0hfSTI2N3ZuYjA/view

You'll have to copy/paste the link because the forum still thinks I'm "new".

Kevin
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Old 10-06-2017, 12:05 AM
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I had my surgery at Emory in Atlanta in 2015. I had the laser ablation surgery on my left temporal lobe. The laser surgery is less invasive than the lobectomy. My left Hippocampus and part of my Amygdala were removed. The surgery was successful. I no longer have complex partials. But, I do have occasional auras. I've had side effects (e.g., memory, emotions) from the surgery, but they have gotten better over time.
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Old 10-06-2017, 09:53 AM
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NHS did my surgery. We get it for free
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Old 10-10-2017, 05:55 PM
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Hi truegrit,

Strong Memorial Epilepsy Center in NY did my right temporal lobectomy and the removed 75% of my right temporal lobe and all of my right hippocampus. My seizures decreased 60% but I knew from the beginning that my seizures would only decrease because I had damage on the left temporal lobe also but it was to risky to do surgery on that area or I could have been paralyzed or blind. My personality change for the better and I was a lot happier and on much less med.
I would give it a try but it's up to you. I wish you the best of luck and May God Bless You!

Sue
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Old 10-19-2018, 01:01 PM
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Depression and Anxiety.


How many of you that have chosen to have surgery have suffered from depression and anxiety afterward? I'm weighing the option of surgery and those two side affects are my biggest fears.
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Old 10-19-2018, 05:36 PM
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I had left temporal lobectomy to remove scarring on my left temporal lobe in March 2011. My surgery was done at the Austin health which is in Melbourne Australia.

My surgery went well, good recovery & I was 2 years seizure free but started having seizures again in 2013 after we dropped one of my meds.
It started of with just little simple partials but now I'm back to having simple/ complex partials but nowhere near as much as I used to.


Originally Posted by truegrit View Post:
How many of you that have chosen to have surgery have suffered from depression and anxiety afterward? I'm weighing the option of surgery and those two side affects are my biggest fears.
Not depression but my overthinking got bad after surgery where I'd over analyse most things. I ended up going to see a psychologist who helped me use techniques to deal with the overthinking & also cope with my stress.
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Old 10-24-2018, 11:23 PM
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thank you all, see part of the issue is they keep offering me surgey, but I have never seen then stats down on paper before.

I cant make it 6 month with out one, but I even to be humble i am proud of my spatial problem solving skills. and losing that I can tolerate the shakes
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