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left temporal lobectomy done end of September! 06

Well, it is finally finished! My surgery was done September 25th and it looks like it was a success! I haven't had even one seizure or anything since I was on the OR table! I have no regrets either! I recooperated really well and I am almost back to normal. I just still have to refrain from lifting for another week or so. If anyone asked me, I would recommend for them to at least give it a try. It was an emotional and stressful year leading up to it but it was worth it! I am just so excited about the future now! Good luck to everyone and Hugs! Chumtochatwith

Comments

Re: left temporal lobectomy done end of September! 06

Congrats Chum! Thanks for posting, it's always good to hear stories of success. Hugs and smiles!

Re: Re: left temporal lobectomy done end of September! 06

Welcome back from surgery Chum,

I hope it was successful.
But you need to understand that not all surgeries are, and that complete success is determined one year- two years after surgery when AEDs are removed.

http://www.epilepsy.com/epilepsy/temporal_lobectomy.html

I had my left temporal lobectomy early last January and I'm not planning to celebrate any success until after I get completely off AEDs.

~sol

Re: left temporal lobectomy done end of September! 06

My surgery was done on Oct. 2nd and they removed my cyst that was in my left temporal lobe. I am still going crazy because I can't work until I go back to see the doctor on Nov. 11th and he says so, but i'm doing great. My jaw hurts a bit still, but its healing as the muscle gets stronger. Hopefully I have no more seizures. We shall know if they will happen- during ovulation, when they normally did occur mostly. So far, since surgery, none have happened. And its almost been a full month. I'm soooo happy. I had them for 11 years since I was 20 years old. Maybe now I can go back to college and get a real job when I get a degree, and just really be strong in life because I don't have these seizure problems anymore. They were so problem causing for me, hopefully surgery helped me take the step I needed to do the things I want to do and smile the way I really want to. :) I'm happy for you too. If I feel this good with hope and courage now, so must others like yourself who have had surgery too. I love the feeling of not being hopeless anymore. It's like a second chance. :) Kelly G. My hair just has to grow back now. LOL

Re: Re: left temporal lobectomy done end of September! 06

Hi Kelly G.
Yes, my jaw is still strengthening too but as time goes by it is getting better. I too am really looking forward to getting back to work. I was diagnosed at 19 and had them for almost fourteen years. Mine were triggered by music so it was extremely limitting but I have been out shopping and listening to the radio at home and nothing has happened! I'm so excited! Like I told my son before the surgery, this will change my life and it has! My neurosurgeon only shaved about half of my head but I came home with a huge knot in my hair so I got it cut short anyways. Now, I just have to wait for the left side of my head to grow. The one thing that I can't wait for is when I can learn to drive! We still have 23 months to go till then. lol Glad to hear that you're doing well. Good luck.

Re: left temporal lobectomy done end of September! 06

How wonderful you must feel with being able to get back to the "real" world. I am having a left temporal lobe surgery day after tomorrow. I am excited, nervous, anxious, all those other emotions...I was diagnosed with partial complex seizures over 27 yrs ago, and didnt find out that I was a candidate for surgery until Sept. 13. Things have moved mighty quick for me. I am happy for your success and I wish you the best with beginning a new life.
Diana

Re: Re: left temporal lobectomy done end of September! 06

Dear Diana,
I pray that things go as well for you as it did for me. I thank God everyday for such wonderful healthcare professionals. You will be surprised how much pressure there is afterward but it goes away fairly steadily. It took about two weeks for me to start to feel half normal again. I had quite a bit of nausea as well but that goes away too. Thank you for your kind words and I wish the best for you too! Good luck and please let me know how it goes!
Chumtochatwith

Re: Re: Re: left temporal lobectomy done end of September! 06

hi

Congratulations on the surgery. I am looking into surgery as an option at the moment for a scar on my left temporal lobe. Can you tell me what your seizures were like before (ie. frequency?) It is the hardest choice to make as I do not have grand mal seizures on a frequent basis, but I do have auras and petit mal seizures more which impact my everyday life. I don't know if I should take the risk, or just stay on the medication. I am trying to find if anyone is in a similar situation.

thanks
sam

Re: Re: Re: Re: left temporal lobectomy done end of September! 0

Hi Sam,
my seizures were triggered by music so anywhere that I was exposed to that I had a seizure. Up to 4 per day if I was exposed that much. Usually 2-3 per week minimum. I tried numerous medications without success and my seizures were the same, auras and petit mals. I only had a few grand mals few and far between. But all of my seizures were coming from the same spot. And you are right, it does impact everyday life. So, I would recommend that you seriously look into the possibility. It has tremendously improved mine. There is no denying that the surgery is like nothing you will ever experience again but it is all worth it. I was awake for most of mine since the surgeon wanted to map where my speech was located. Two of my tests said it was on the opposite side of where it would be expected to be, that is the dominant side. They said mine was on the right hemisphere and I am right handed so the surgeon just wanted to make sure. If you have anymore questions, please feel free to ask. Good luck with everything.
Chumtochatwith

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