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Old 03-27-2015, 07:55 AM
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Temporal Lobe Resection


This summer, I am going to Oschner to see if I am a candidate. I am not going to lie, I am slightly terrified, although as I told my sister "imagine the endless jokes." Anyone have any experience with this type of surgery or any brain surgery at all? Naturally as an academic my greatest fear is losing my capacity to think, but also personality changes, the seizures getting worse, etc.
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Old 03-27-2015, 09:05 AM
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Hi Garbo,

There are a few here on CWE that have had the "surgery", myself being one, so it has been discussed and here are a few links:

http://www.coping-with-epilepsy.com/...surgery-23880/

http://www.coping-with-epilepsy.com/...surgery-23684/
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Old 03-27-2015, 05:16 PM
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I can't offer much info, and I'm in a different situation, but I can relate. When I was a child everyone told me how smart I was. Things changed when I was diagnosed with epilepsy and a benign brain tumor. If I didn't have that tumor I have every reason to believe I would be a PhD. I held out hope until two years ago when I had to face facts. More recently I decided that surgery might be worth the risk. I will be going for surgical evaluation next month. If I do it, it would be a problematic surgery. I never wanted surgery because in my younger years my control was acceptable, and I was afraid of loosing what I had. With all the uncertainty it was (is) a terrible place to be. However, I am glad to be getting my first surgery evaluation since the 80s! At least I'll know what they think. More information is often helpful.
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Old 03-27-2015, 05:38 PM
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I had surgery done, i had 6cms from my right front temporal lobe and 3cms from my hippocampus removed. Unfortunately it didn't do anything for my seizure's. I'm still having them, but because of the surgery my short term memory is practically gone.

If I could go back in time, I'd tell myself NOT to have that surgery done.
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Old 03-27-2015, 09:07 PM
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Originally Posted by seizuregirl View Post:
I had surgery done, i had 6cms from my right front temporal lobe and 3cms from my hippocampus removed. Unfortunately it didn't do anything for my seizure's. I'm still having them, but because of the surgery my short term memory is practically gone.

If I could go back in time, I'd tell myself NOT to have that surgery done.
Thanks for this info! I'm extremely hesitant, and as I mentioned above I desperately need my hippocampus-- the medications are a pain for memory as it is! I'm also very sorry that you dealt with that. Ergh! We chatted about the VNS, which I am still thinking about, but I also sing, like, professionally and if I had it installed my epileptologist said I wouldn't be able to sing anymore. Plus, ha, I also have a heart murmur.

Since I'm sensitive to medications, I feel like I'm in between a rock and a hard place and I might have to get the VNS eventually.
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Old 03-27-2015, 09:19 PM
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Originally Posted by Matthew74 View Post:
I can't offer much info, and I'm in a different situation, but I can relate. When I was a child everyone told me how smart I was. Things changed when I was diagnosed with epilepsy and a benign brain tumor. If I didn't have that tumor I have every reason to believe I would be a PhD. I held out hope until two years ago when I had to face facts. More recently I decided that surgery might be worth the risk. I will be going for surgical evaluation next month. If I do it, it would be a problematic surgery. I never wanted surgery because in my younger years my control was acceptable, and I was afraid of loosing what I had. With all the uncertainty it was (is) a terrible place to be. However, I am glad to be getting my first surgery evaluation since the 80s! At least I'll know what they think. More information is often helpful.
I think if anyone wants a PhD, they can get it and I'm not saying that to be pretentious, but to really diffuse the glorification around the degree. My mom got her Masters in her sixties and it took her six years. It was grueling for her, but as we talked about, most graduate degrees are based off of hard work and active roles (as opposed to passive). Like right now, I am finishing up a paper (I'm giving myself a break so I don't, you know, break down crying, ha!). It's just dealing with the Academy and the people in the Academy, which is why I have no desire to stay in the construct itself.

Good luck meeting about your surgery!
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Old 03-28-2015, 12:40 AM
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Well, you have to work hard, be able to remember things, not get too sick, and more important than all of these, you have to come up with the funds.

I really wanted to be a professor. I also wanted to be a musician. I worked hard at both, long after everyone else had given up on me. Just be thankful that you can do both.

An old friend of mine thought that everything came down to confidence. Confidence came naturally to him, so he told himself that if someone fell short it must be for a lack of confidence, a moral failing he largely avoided. The same goes for hard work. It's a virtue, but even it requires a multitude of opportunities and abilities to attain its goal. Sometimes you just end up in the hospital!
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Old 03-28-2015, 06:29 AM
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I had left temporal lobe surgery in March 2011, before my surgery I was taking auras, simple/complex partials on a regular basis & the odd tonic clonic.
The surgery has helped a lot with my seizure control, 2 years post surgery I started having funny feelings in my head & a strange noise which the neurologist confirmed were auras.
I have had to adjust my meds a couple of times to try to find the right combination to help control these auras, I still take the odd aura but they are slowly reducing.
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Old 03-28-2015, 09:41 AM
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Originally Posted by seizuregirl View Post:
I had surgery done, i had 6cms from my right front temporal lobe and 3cms from my hippocampus removed. Unfortunately it didn't do anything for my seizure's. I'm still having them, but because of the surgery my short term memory is practically gone.

If I could go back in time, I'd tell myself NOT to have that surgery done.
Except my surgery was on the left side and my memory is BAD. And in fact it made MY seizures worse. The damage in my brain that is causing seizures is deep in the hippocampus, so they couldn't get it all. They told me I would end up like an end-stage Alzheimer's patient if they were to operate again. Plus, when surgery is done on the left side, the risks are slightly higher for depression and memory/speech problems.

Since the surgery made my seizures worse, I had the VNS, and for me, that has worked much better than the brain surgery. I wish to god that it had been available when I had my 1st surgery. It isn't a cure-all, but for those who can't have brain surgery, it is worth it. With brain surgery, there is NO turning back. Once it's gone, it is gone FOREVER! At least with the VNS, if it doesn't work for a person, it can be turned off. And it can temporarily be turned off with the magnet when you sing.

Read more on the VNS and brain surgery:

http://us.cyberonics.com/vns-therapy

http://www.epilepsy.com/learn/treati...oral-lobectomy
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Old 03-30-2015, 08:52 PM
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Cint - My Dr. is thinking that an RNS might work for me. I'm not so sure about that, only because he, along with 2 other dr's at the time, had told me that the brain removal would work wonder's for me, with no problems afterwards. And I, like a moron hoping to be "normal", believed them.

I really won't be able to use then RNS since I don't have aura's, and that was the one of the first things he had talked about when he was explaining how to use it, was when I have an aura, take the magnet and swipe it over the RNS, and I had to remind him that I don't have them. But he still talking about it.

I think they only reason he's pushing it is because the hospital has just had their first successful surgery last month and he's hoping for another one.

Last edited by seizuregirl; 03-30-2015 at 08:56 PM. Reason: better wording
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Old 03-31-2015, 11:29 AM
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Originally Posted by seizuregirl View Post:

I really won't be able to use then RNS since I don't have aura's, and that was the one of the first things he had talked about when he was explaining how to use it, was when I have an aura, take the magnet and swipe it over the RNS, and I had to remind him that I don't have them. But he still talking about it.
Sorry, seizure girl. Don't let the docs push you into something you're inner voice is telling you not to do! Stand up to them and say NO!

Originally Posted by seizuregirl View Post:
I think they only reason he's pushing it is because the hospital has just had their first successful surgery last month and he's hoping for another one.
Not only another success story but more $$.
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Old 03-31-2015, 02:19 PM
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I agree about the money, they definitely want as much money as they can get! But I'll only be able to give them what little bit of loose change I can find in the bottom of my purse. I think they'll be disappointed! My Father's the one with the money in my house, not me.
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Old 04-13-2015, 12:06 PM
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Hi Garbo. I guess it's easy to say don't be too scared now, I've had surgery twice, in 2000, had a Temporal Lesionectomy, five years seizure free, then in 2008, I had a Right Temporal Resection as the seizures started again, Nobody knows why. My epilepsy was caused by forceps, and started in 1986 with a Tonic Clonic. I mainly had Simple and Complex Partials until my surgery, and although things are now much improved, I now also have Atonics, due I think to the menopause. I give a lot of talks and do radio interviews, etc to raise awareness, and when talking about surgery I try not to scare people, we are all so unique, surgery may work for some, but sadly it hasn't for me, but Temporal Lobe is renowned to be the most difficult to control.
I understand your concerns over surgery affecting your abilities as an academic. I can certainly think okay, I just have little short term memory. My neurologist explained all the risks to me before the surgery, including losing memory of the preceding ten years to the surgery, so basically my memories of the 1990's is zero, and most of the 00's, I get letters the wrong way round sometimes when I'm typing, which is strange. I can memorise sequences of numbers though, but still have no ability to concentrate before or after both lots of surgery.
This may help your confidence in the surgery, during my second surgery, I was studying for an NVQ in Epilepsy Management with Leeds University, they very kindly gave me a couple of extra weeks to complete my studying after my surgery, and I passed no problem. I just have to write everything down. If I had the chance for a third op, I'd go for it, it really wasn't painful, I was texting as I came out of recovery the second time, I was out of hospital after a week, and apart from a swollen eye, a cut through the Trigeminal nerve and the obvious headache, I couldn't believe how little pain there was.
You and the experts looking after you should decide, I was fortunate to be under a great team at Queens Square in London.
All The Best Elaine H

Last edited by Elaine H; 04-13-2015 at 12:12 PM. Reason: Missed words out
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Old 04-13-2015, 12:44 PM
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Elaine, your issues with getting letters mixed up could be keppra. When I started Keppra I was typing letters in the wrong order, typing words in the wrong order, and reading both in the wrong order. I sat down at the piano and my right and left hands were mixed up. I started getting my vowels all confused, so that I couldn't tell if I had misspelled a word. I still have problems sometimes getting numbers out of order, even after looking very carefully, and with the vowels.
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Old 04-14-2015, 08:11 PM
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Garbo,

I'm a little late to the party but I did have a temporal lobe resection and have recounted my thoughts and experiences here:

users.eastlink.ca/~kehoe/surgery/

You'll have to paste that link into your browser since admin thinks "I haven't been around long enough to post links or images".

Kevin
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Old 04-15-2015, 08:50 PM
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I'm scheduled for first surgery on May Day for insertion of electrodes for intracranial EEG. Second surgery scheduled for May 8. Possibilities of general resection, laser, or implantation of NeuroPace device depending on complete results. Neurosurgeon not too optimistic about NeuroPace for me since VNS did no good for me. Yes, been doing all of the tests for the past year and a half. Damaged tissue is near occipital lobe and hippocampus. We shall see what they find out for sure.
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Old 04-16-2015, 11:13 PM
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Thanks so much for everyone's input! I am really rethinking it, especially since I am going to be heading off to get another Masters in the midst of the PhD (idiotic, but oh well!). I'm worried because I've heard mixed things about the VNS as well and my epileptologist has not mentioned anything else we could try.

But, I do really appreciate the input, feedback, thoughts, etc. That means a lot to me.
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Old 04-17-2015, 09:06 AM
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Originally Posted by Matthew74 View Post:
Elaine, your issues with getting letters mixed up could be keppra. When I started Keppra I was typing letters in the wrong order, typing words in the wrong order, and reading both in the wrong order. I sat down at the piano and my right and left hands were mixed up. I started getting my vowels all confused, so that I couldn't tell if I had misspelled a word. I still have problems sometimes getting numbers out of order, even after looking very carefully, and with the vowels.
I doubt it. I get my letters plus words mixed up, also and I didn't have that problem before my left temporal lobectomy. It started way before I started taking Keppra and I'm on the max dosage of Keppra.
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Old 04-17-2015, 09:12 AM
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Originally Posted by kyrissa View Post:
Damaged tissue is near occipital lobe and hippocampus. We shall see what they find out for sure.
My damaged tissue is deep in the hippocampus and they couldn't get it all. If they were to go back and do a 2nd surgery, they said I would end up like an end stage Alzheimer patient, losing my ability to remember and speak.

No thanks!
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Old 04-17-2015, 01:21 PM
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Hi Matthew Many thanks for your reply, Keppra is a beast of a drug isn't it? also renowned for causing outbursts of temper, it was "affectionately" known as Kepprage by a few people on here, and I'm on a comparatively low dosage 1,500 am and 1,500 pm. it's interesting that I only get mainly the two words wrong THAT I type as TAHT and THE TEH, I can't think of any others right now.
Any ideas on my latest problem? About eighteen months ago, I was diagonosed with a Focal Dystonia, known as Blepharospasm, it's a neurological movement disorder and of course, my left eye is the worst of the two, I have to actually hold my eyes open to read and watch tv, at first, there was no connection made with my epilepsy, then it was suggested that it was caused by the surgery or the birth trauma. I now have to have three monthly injections of Botox into and around my eyelids. It's amazing how we adapt to conditions we are diagnosed with, my eyelids actually go into spasm and kind of scrunch up, strange sensation. Now though, I'll never be allowed to drive again, no matter how long I am seizure free for as there is no cure. Best Regards
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