Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Left temporal lobectomy

Hi! This is my first time in the community forum, and I'm hoping to hear from those of you who have had a left temporal lobectomy. I've had partial seizures for 12 years, and was properly diagnosed about 2 years ago. I was told for years that my seizures were panic attacks. Go figure. Anyway, I've been on 8 medications without success, and am now being told that a lobectomy is my best option. My MRI shows a definitive lesion on my left temporal lobe. I'm a 34 yr old woman, married and have 2 young boys (3 and 4.5 yrs old) and I'm most worried about the speech and memory issues that could arise after surgery. How long is the recovery process, both from the perspective of regaining speech and memory capabilities, and from the perspective of being able to be physically active? How severe is the word-finding issue? I really worry about the impact the surgery will have on my ability to be there for my children. Are there any other young moms out there who've had surgery, and if so - how did you deal with it? And how did your children cope with the situation? Any advice would be appreciated. I meet with my neurosurgeon at UCSF in a few weeks. -FMS

Comments

Re: Left temporal lobectomy

When I was 18 I had a left temporal lobectomy. The surgery was a success. I am 27 now & have been seizure for almost 9yrs. The only thing the surgery caused is a blind spot in the top corner of my right eye. It is not noticable or a hinderance. I am driving & am finishing my bachelor's degree in Mechanical engineering. I am currently taking neurontin and dilantin. Those are the only 2 medications I am taking now.

Re: Left temporal lobectomy

Hello - I know this post is now nearing 5 years after FMS' post, but I still felt obligated to add my success story to everyone else's here! I'm currently 27, happily married, and had a left temporal lobectomy for partial seizures in August, 1999 at New York University Medical Center. The primary reason for this surgery was my first and only convulsive seizure one year prior to the operation. It set off a red flag that my epilepsy was getting worse.

I have been seizure-free and medication-free ever since the operation with little to no long-term side-effects. I was able to return to my sophomore year of high school only six weeks after the operation. I say "little" in that neuropsych testing both pre and post-op revealed only minor short-term memory issues (primarly photographic short-term memory). Immediately following the operation and for about 6 months I would get occasional migraines. But these disappeared. This has had no effect on my education or my life. I finished high school, went to college, and now work for the government in Washington, DC, happy as can be. If anyone has any other questions, feel free to ask (click my username).

Re: Left temporal lobectomy

Hi FMS,

 I cannot believe how similar our lives are.  I am 34 years old. Have had seizures for 12 years, as well.  I recently was diagnosed with mesial temporal sclerosis.  My neurologist is wanting me to have the lobectomy too.  I have been on several medications, and none of them have really "worked". I have break through partial complex seizures.

I would love to know how everything went for you. What was the recovery and rehab for you? How much of a cost was it? (I hope that is not too personal/intrusive for you). I do have insurance, but I am afraid of the out-of-pocket cost. I would love to know how much I need to save.

Anyone out there who can help me out, please respond. My email is candice_jeepgirl@yahoo.com

Thank you, thank you, thank you!

Re: Left temporal lobectomy

Hi, FMS,

Like Candee, I have a very similar story-- I am 35 with complex partial seizures uncontrolled by medicine. I've had them for 11 years now and am starting testing at UCSF to see if I am a surgery candidate.

Did you have the surgery? If so, do you feel it was a success? And how did you like UCSF/ your neurosurgeon (who was it there?).

I hope that if you had the procedure you are experiencing a wonderful outcome, as well as your family.

Truly,

SM

Re: Left temporal lobectomy

Hi FMS,
I had a left temporal lobectomy a the end of September/06 and I also have two boys ages 10 and 13. Now they warn you of speech and memory problems possibly but you know what, I haven't had any problems whatsoever. My speech is just fine and no memory loss at all. It took me about three weeks before I started to feel kind of myself again but I had a very supportive family behind me so that helped greatly. You aren't supposed to lift anything over 20 lbs for the first month or so so it helped me because my husband and my children took over all household chores and responsibilities. I had a lot of nausea afterwards but I coped with that by taking Gravol to avoid vomiting. That worked really well. After three weeks, I was fine though. My kids are a little older but I just prepared them by being open about everything and just telling them what was going to happen. They were very supportive and dealt with everything just fine. They literally grew up with me having my seizures and it always affected them because my seizures were triggered by music so it was a constant concern. Anyways, it was all well worth it because we have music back in our home again and it is wonderful. I hope everything goes well for you. If you have any questions, please feel free to ask. Good luck!
Chumtochatwith

Re: Re: Left temporal lobectomy

Thanks Chumtochatwith, I appreciate your response.

It's comforting to hear about your success story, and how supportive your family has been for you. I have so many questions - I hope you don't mind my asking! Are you completely seizure-free now? Do you still have to take medication? And when were you told you could drive again? How long was it after surgery before you were able to be out and about? Were you bedridden at all or have to undergo any rehabilation?

My WADA results indicate that my memory resides on my right side, but my language resides on my left so the surgery will be performed while I'm awake. Was this the case for you? If so, how scary was it? I would much rather be totally knocked out for the surgery.

Do you feel like your memory is any better after the surgery? I know it hasn't been that long, but I'm just wondering if you've noticed any difference. Mine right now is so bad, any incremental change would be great.

Thanks again for your response - hope to hear from you soon!

-FMS

Re: Re: Re: Left temporal lobectomy

Hey FMS,
I am completely and totally seizure free, yes. My meds are decreased and will be over the next year or so. They have to wean them slowly unfortunately or else I would probably be off of them totally but I have been taking them for a long time so they do it slowly to avoid problems. I have never driven so far but I will be able to learn in about 20 months. You have to be seizure free for 2 years min to be able to drive. I probably wasn't up to doing anything until about 3 to 4 weeks after surgery before I was up to going anywhere. I just wanted to sleep. I found that this actually interrupted my sleep patterns because I was sleeping during the day but with some work I was able to get this back to normal. You just can't lift more than 20 pounds for the first month. That is the only limitation after surgery. My tests concluded that my speech was on the right side. It is normally in the dominant hemisphere and I am right-handed so my surgeon was a little suspicious and wanted to play it safe. Therefore, he kept me awake through my surgery also so that he could map out where exactly my speech was. I was anxious and yes you can hear everything but I was okay. The only problem was they had trouble getting my ivs in and the freezing didn't get to my temple so it was a tad painful. But once the anaesthetist noticed he knocked me out I think because I don't remember the last part of the surgery. I have to agree with you, it would have been a lot nicer if I was totally knocked out but there was a reason for it. I haven't had any problems or deficits since my surgery. Everything seems to be about the same. Hopefully, this is helpful. If you have anything else you would like to ask, please feel free. Good luck and God bless!
Chumtochatwith

Re: Left temporal lobectomy

Hi FMS,

I have dealt with the surgery many times. I was 34, 36, and 37 years old. My children were 5, 7, 9, and 11. It was very hard with the children. For I was always worried about them most of all. But my children grew up with epilepsy. They just know mom had seizure and that she needed to get fixed so I could help raise them even better. But it was very hard for them. WHen I spoke with them about it and how long I would be in the hospital two said not one word, and just walked away after I had the conversation. My older one asked many questions, I wanted to break down and cry but did not. He asked if I could die. I had to be completely honest with him.

But I was in the hospital for over three weeks each time I had surgery. I made sure I talked to them almost everyday. My husband brought the kids very often. It was so hard for my husband, working, taking care of the kids, the house.....Plus running back and forth to the hospital so often and it was over an hour away.

Memory problems is hard now and worse when I dont get enough sleep. Mine was on the left side also and my speech and movement was in that area too.

I took about a month. I would walk a bit up the street when I was ready but a little at a time. I mean I would move from house to house each day till I got up the street. I did have some finishing sentence problems. I did finish finally it took a month.

I went back to taking care of my children right away. They would help me out for they knew mommy would be a bit sick for a short time and that they had to be good.

Right after each surgery I was well aware right away. It is not like you are totally out of it. At least that is how I was.

I am not seizure free after all that, but did decrease 15 complex partial seizures a month. To me it was till a success.

I want to wish you the best with your surgery.
take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P