Has Anyone Had A Left Temporal Lobectomy? I'm Weighing Up The Pros And Cons | MyEpilepsyTeam

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Has Anyone Had A Left Temporal Lobectomy? I'm Weighing Up The Pros And Cons
A MyEpilepsyTeam Member asked a question πŸ’­

So seeing as no meds are keeping my "mental moments" under control, the docs are investigating surgery. I've done various tests such as fMRI, 5 day EEG and various conversations with psychologists etc. There's still a couple of tests they've booked me into do where they freeze parts of the brain (can't remember the name) and others
But I just want to start doing a bit of research weight up the pros and cons of having the surgery as the docs have noted that my speech and memory may take a hit… read more

posted March 12, 2017
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A MyEpilepsyTeam Member

I've had this too, including my Temporal Lobe. Be fore my surgery , went through many tests. I did what my Epileptologist called a Psych Test. It was much like an IQ test before and after my brain surgery. They wanted to see where my speech, memory cognitive, and what kind of choices I would make in life. were at.
I also had an MRI done, the WADDA Test , where they freeze one sphere of the brain. Then freezes the other half of the brain. During the freeze they would ask easy questions and task. Things like counting, saying the ABC's , and even sing Twinkle Twinkle Little Star. Then approaching my surgery they opened part of my skull on my left temporal lobe and place a pad with electrodes ( called the GRID TEST ) in it. The placed it in the area where my seizures were active. Then they stapled it shut. Then after this the also hooked me up to the EEG. At their seizure Unit at the hospital. Between the GRID & EEG helped them map the exact point , where the seizures are. While doing these two procedures at once they would slowly reduce my Meds , trying to get good seizure results. I was on the GRID And EEG for 7 days. By my seventh day , they had my on my lowest med level and they still weren't getting great results. My Dr. came in and asked me what Iwould like to have that I can't eat or drink on a daily basis. I wasn't craving Alcohol, but I wanted a non diet soda ( regular pop makes me seizure ). I chose Dr. Pepper. Through the day I finish one can and was starting on my second one. My Mom came in to visit and forgot to warn her. While she was in my room I started going into a mager seizure. They finally got what they needed. The next day a specialist came to visit me whith a strange box, and did testing with the GRID. Similar like the WADDA Test , he would ask me to count by numbers 1-100, sing simple songs, and says he ABC forward and backwards. During his testing I experienced what it's like being a Schizophrenic . I was having trouble concentrating because I kept hearing voices in the hall but no one was there.. After all of that I was brought down to do the brain surgery. Then put into the ICU room.

Since my surgery I went from having sever seizures to moderate and mild seizures. I still can't control them 100%, but they have reduced by frequency. Over all it was worth it.

posted March 15, 2017
A MyEpilepsyTeam Member

I had a left temporal lobectomy in November 2008. I had wada, eeg, MRI & was in a room for a few days with leads on my head attached to a machine with a camera in the room. Can't remember what it was called. They come & knock on the door when you have a wee to make sure you're ok! They can tell a lot by what your brain & body does at the same time during a fit. Mine were very severe off medication. Only when I had very late nights & alcohol but severe & was ill afterwards.
The surgery hasn't been a great success & I was told afterwards that it would not stop the fits completely just reduce the amount & the severity. They also said afterwards that it takes 18-24 months for your brain to settle down completely & assess the success. I understand that the younger you are for surgery the better after effects on the number of fits. My bed neighbour in hospital had the same op, had no hair shaved off, her head stayed the same shape ( mine looked like half a rugby ball & I had a black eye the day after- it settled down after 2 weeks.) She looked about 18ish so I presume hers was a better experience. I don't regret the surgery but I wish I'd gone into it with my eyes wide open. I saw it as a cure, it isn't. I think because I didn't get much rest after surgery, going back to work too soon & the way I was treat at work following added to deterioration in health. For these reasons my advice would be;
Ask what results they expect after surgery. Will you have less fits? Less severe? If so how frequent compared to now.
Can they do the op without shaving your hair? I was going to have a surgeon that did but then they gave me a different surgeon who did shave it.
Will it effect the shape of your head for a while & where would the wound be? I had one down my head & to the bottom of my ear at the side of my face. The patient next to me didn't.
If they say they have to shave some off, where & how much? With your long hair you may be able to cover the scar with a dressing?
Will it effect you memory? If so how much do they think it will?
When you get home REST! It really helps your brain to heal straight after. Let your mum pamper you. Wish I'd had mine then πŸ˜₯
Have at least 2 months off work even 3. You need to be right before you go back, your health comes first & it looks better on your record than having 2 or more episodes by going back too soon.
Ask if you have a period of depression afterwards. I did for 7 weeks & was warned & explained was normal following this type of surgery. It came overnight & went overnight! Wierd!
If you've had low mood before ask if it would have any long term detrimental effects to your moods.
I hope I don't sound too negative, I don't regret it but wish I'd had this advice myself before.
I'll hunt out a booklet on it if I can find it & give you my email to give me your address if I've still got it
Good luck xxx

posted March 15, 2017
A MyEpilepsyTeam Member

It took me about 9 months when I waiting for my brain surgery appt. but between all that time, They had me do all those tests done before that date.

posted March 20, 2017
A MyEpilepsyTeam Member

I had a R temporal lobectomy. One of the first done in salt lake.I had very little pro op testing.In fact think it was an eeg.It was completely unsuccessful even with further meds.Almost 10yr later started lamictal.and have a sz since.At the time my memory problems were attributed to the surgery(temporal)but in dont now.
2 other friends had R and L temporal lobectomies. a year later.Theirs resulted in total control with different and small amts meds without side effects.They both had a, pre op eeg and mri.The more preop testing seems to lead to the biggest chance for success.

posted March 18, 2017
A MyEpilepsyTeam Member

Thanks guys, I'll defiantly have a look through epilepsy foundation. A part of me kinda wants to see the gruesome brain slicing pics just so I know what the operation actually entails. I was going to shave my head for charity along with it and record it and make some geeky mash up video to promote it.

In terms of my character and the docs being worried about it like they were with you Suzannemills, I would probably say my normal character is similar to yours with the just "go for it" sarcy attitude and not taking life too seriously eg pink hair and playing and singing music loudly out my car. However, the past few years has finically got on top of me and depression has officially hit and my character has changed. So I've got to keep that in mind whenever I think of stuff like this (like brain surgery is a daily thing...!) but I'm slowly getting back to my normal self. My sister aaid the other day she's noticed a difference as I've not bit her head off in a good few weeks πŸ‘ So that was really helpful you mentioning that, thank you.

posted March 14, 2017

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