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Lobectomy
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chomper99 posted:
For the people who have had Lobectomy how did the results turn out ? and if you had short term memory problems before, do you still have memory problems ? did restore any lost memories as well ?
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saxofone1 responded:
Hi chomper99,

I had a partial rt lobectomy done in April '02. The meds I was taking at the time(keppra, lamital, trileptal, and topamax) had run their course of being effective.

My memory did improve after the surgery. I started recalling names, faces, places, events, etc. that I hadn't thought about in years prior. My immediate recall showed some improvement also.

The seizures also decreased following the surgery. I went one year w/o any. The topomax was the first to be eliminated and I had one seizure shortly after it was totally gone. The next four years were seizure free('03-'07)

Seizures started again a few years(1-3/mo with some months w/o any) ago. I am currently experiencing a period of peace. I have had two this year.( feb when having a video eeg done and all meds were taken away. And the 2nd(may) was due to missing my bedtime meds.)

Despite the re-occurence of the seizures, I am very happy about the outcome of the surgery. Fewer seizures, less meds, and a better recall of past times.

Are you(or someone you love) considering the lobectomy?

Sorry if I'm talking in circles. I hope this has answered some of your questions. Keep in touch.

angie
 
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chomper99 replied to saxofone1's response:
i'm thinking about it. but I feel more comfortable doing the MEG scanning on me 1st. I just got a new health insurance and of course I cant go see my neuro so soon cause they can pull out the red card on me. I havent seen my neuro in 4 years. My condition is a little different, ive almost grown out of it. I dont have surprise attacks anymore and I always know before having a seizure. only times I will have an attack is if I get extremely stressed out. but usually if I get really stressed out over something and start feeling a little weird, lucky for me I can fight it. just put my mind on something else play some music and the feeling will go away so it doesnt turn into a seizure. only time I cant control them is when I am asleep. but something during the day earlier would have had to cause it.

I dont have any surprise ones anymore like i used to when i was a kid and ive learned to fight it. but when I do have them after getting into a fight with my mom, they still hurt more than anything else. I would still like this out of me 100%.
 
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saxofone1 replied to chomper99's response:
Hi chomper,

I went through many tests prior to the final decision to have the lobectomy. I had the eegs, the memory tests, and the WADA done.

The WADA is when the put one side of the brain to sleep while the alert side is tested for its functions(speech, memory, sensation, etc.) Both sides are tested.
It showed that my seizures were coming from the area that has to do with memory. It was speculated that the surgery would most likely improve my memory since the seizures would no longer be there to 'cause interference.

I'm unfamiliar with MEG. Are you talking about the grid? I had the grids placed before surgery. This test showed the specific location of seizure activity. It helped map out the surgical path for my lobectomy. Once that "spot" was located I was prepared for surgery.

My doctors had it planned that if a specific locale was found that they would procede with surgery while I was in the hospital with the grid observation. That way a second procedure for getting into the skull could be avoided.

In the early years of epilepsy, I did have auras. But as I got older the auras disappeared. I could tell a seizure had passed because of a loss of steps or a loss of time had occurred. Things like not recalling passing this spot on my way to wherever. I also had a familiar taste in my throat, a taste I experienced following seizures that occurred when I was having auras.

Are you near an EPILEPSY FOUNDATION? Think about asking your doctor if there is any one who has had the procedure that would be willing to meet and talk with you. I met a wonderful lady(she's on this site as "clarinet2) through my epileptologist. She is a patient of his and ahd had the same procedure a year earlier. We are great friends today.
Inside support is wonderful.

Also, see if there are any tapes/dvds that you can watch regarding your upcoming procedures. Look into the resources that are listed at this site for more info.

Have a good day,
angie
 
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clarinet2 responded:
Hello chomper99,
I also had the same surgery as the responder Angie did.
The results of my surgery is a miracle according to my doctor.

After the surgery another neuro psych test was done to evaluate my memory, reading level, thinking and other personality issues. The test came back with much higher scores.

My memory has improved, especially the short term memory. Multi tasking is much easier and I do not become overwelmed as much as I did when seizures were still occuring.

I would not stop your appointments with neurologists because you still may be having some very amall seizure activity
and it is best to keep your physicans updated. Some people grow out of them, but sometimes the seizures can be small, but your doctors still need to be aware of how you are doing.

After my surgery I have been seizure free for 9 years, but I still see my neurologist once per year and I still amd prescribed two medications.

If not followed by a doctor, there can be liability law suits especially with driving if accidents happen.

Honesty is the best policy.

Dana
 
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saxofone1 replied to clarinet2's response:
Hi chomper99

As usual clarinet2 is right on time. I think that clarinet and me have some kind of mental(not crazy) connection. I had planned to contact her some time today.

Anyway, C2 is a great person to listen to and ask questions. She was my support/mentor prior to my lobectomy in '02.

I totally agree with what she has said. Keep your doctor(s) informed about everything. Take notes of when you have a seizure, what foods you're eating, weather(heat can agrivate seizure activity), etc.

Keep in touch with us. C2 and I will be looking for updates from you.

Take care,
angie
 
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chomper99 replied to saxofone1's response:
I can sit on a beach on hawaii for 10 years and not have a seizure. something has to cause them and create them. like a huge amount of stress or intensiveness. one little arguement over what to have for dinner is not gonna make me have one. if its one of those debates like you see on those drama shows like Maury or Steve Wilkos where they are screaming eachother like crazy with so much verbal abuse and almost turns physical. then usually I will have one afterwards. I Always get this feeling in my head to for afew hours before having one. those feelings arent as strong as they used to be so I can fight them easier now since ive gotten older. if I make them go away 100% then I wont have an attack later on. and I think my seizures do come from memories as well. when I was younger, somestimes just out of the blues if I watching TV and one little scene gave me dejavu in a way that connected with one my seizures. then I would have one.

I Might get that tiny feeling every now and then just for one sec, maybe from listening to a song thats some how linked to a past seizure. but I just turn it off or change the channel and im fine. that rarely happens anymore though.
 
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chomper99 replied to clarinet2's response:
if you forget to take your meds will you have a seizure ?

I got epilepsy from a mosquito bite when I was a kid. was on medication from 10-22. If I ever missed taking my meds morning and night I would have an attack then next day for sure. when I got 22, one day I forgot to take my meds comepletely. and the next day I didnt have an attack. I tested myself see how long I can go without taking my meds. and I stopped taking them ever since I was 22. im 26 now and no attacks out of the blues. only have had like 2 the past 4 years, after getting into huge debates with my mother. even when I was a kid if I got reall intesne or upset and i still took my meds the morning or night before, i would still have an attack.

every year they reduced and the pain levels got lower and lower. around 16 I started to know before i have an attack. like a warning or something for later on. around 20 I learned to fight them if I ever got that feeling in my head. if it turned into a seizure it was harder to fight but I could make it happen.

if I am asleep I cannot control them. but the last 6 years the only actual feelings that turned into seizures, happened in my sleep.
 
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saxofone1 replied to chomper99's response:
Hello chomper99,

Have you talked with your dr about how the stressful situations will generate seizures/auras?

I had a similiar problem when I was in college. Mid-terms and finals...increase in seizure activity. That "time of month" also contributed to seizures. Stress is able to cause abnormal activities in our mind/body.

Like you, I was able to stop an aura before it went into a seizure. I too would change thoughts. I also would start meditative breathing. But as time moved on the auras disappeared.

I read your reply to clarinet2. I can't answer for her but I can tell you that missing your meds is likely to raise the threshold for seizure activity. My last seizure(5/25/02) was probably due because i had fallen asleep before I took my bedtime dose for the day before(5/24). Within 24 hrs i had a seizure.

Stopping your meds suddenly could have resulted in some bad/dangerous outcomes. Without medical support or monitoring this could have been very dangerous in regards to where/when seizures occured or how your body/mind re-acted to the absence of the meds.

Is there any activity that keeps you in a relaxed state? Yeah, Springer, Wilkos, Maury will generate excitement/frustration in most people. Relax with The Looney Tunes. Keep that favorite tune playing, all day long if needed, so that your stress level is at it's minimum.

I would love to sit at the Berkeley Marina all day. That always kept me at peace when I lived in the Bay Area. I hope you can find a relaxing spot or activity to keep your stress level low.

Take care,
angie
 
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chomper99 replied to saxofone1's response:
I usually start playing some of my fav theme songs or beach boys or something that lets me relax and let my imagination go with it. as you call them aura's, they go away if I concentrate hard enough off of the topic that caused me to feel weird in there. im not on meds anymore, not becuase I dont want to. no way in hell I would do that to myself. if there was any time I didnt want to be on meds the most is when I was a kid. called seizure boy every day and was emberassed of being on medication. but i had to take them no matter what. the attacks I had back then were the worst. sometimes they knocked me out for a day and the attacks in there felt like my brain was going to explode.

im not on meds anymore is because i have kind of out grown my condition. im not gonna have an attack tomorrow cause i didnt take my meds today. it used to be that way but my condition is no where near as bad as it used to be. only stress can trigger them and I always know before having one as well, i get those auras. I need to see my neuro again to get another prescription filled for my lamictal. i havent gotten it re filled in 4 years. and in 4 years the only 2 attacks ive had is from stress. afew times ive had some of those funny feelings like they could have led to seizures later on but I can control them now. I just need my lamictal again to have on the side incase I do start feeling weird I can take some pills and I wont have an attack 8 hours later, and i will less likely to have one.

going through alot of stress right now with my mom, she shows no emotion or remorse after she makes me have one. I found out about the lobectomy from chatting with you guys. I mentioned it to her and she shows no excitement for me or no encouragement on to me going to get it. she only has respect for someone that has a disability only if she can see it on the outside. like someone is in a wheelchair for example.
 
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meredithc18 responded:
hey chomper,
i had my right temporal lobe removed june 2010 and have had pretty good results. I "skimmed" some of the other responses and will probably be saying some of the same things....... :) I am very pleased that I had the surgery, but I am not 100% cured, but I am an "odd-ball case". The seizures did decrease greatly, but I just do not tolerate any medications at all. I have tried just about all of them and I am either allergic to them or the side effects are awful. I am currently on topamax and it seems to be "working", but for me "working" would mean seizure-free. Since surgery in June 2010 I have probably had a dozen seizures total. This is much less then before, when it would be 6 or more daily for a 5 day stretch, every six weeks.......so, yes, quality of life is better. I could have surgery again.....but not quiet there yet!
As for memory, yes it has improved, and as someone else stated, my overall intelligence increased. I couldn't believe that one! But the testers said that the seizures were blocking my brain waves or something so I couldn't "think" as clearly.......but I do have random memories pop in my head.......
all in all, go for it! :)
-meredith
 
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saxofone1 replied to chomper99's response:
Hi chomper99,

I'm glad to know that being off the meds was not your personal decision. The side effects from the meds were tough on me too.

I understand how you felt as a young boy because I went through a period of rejection too when the seizures first started in '75. I finished 8th grade at home. The people who called themselves my 'friends' soon scattered once they saw me have a seizure.

It's unfortunate that your mother shows you no support. Can that be an area where a lot of your stress stems from? It's sad that people still believe that a disability must be visible before it can be accepted as true.

Is there an epilepsy foundation near you? The foundation is likely to have open support groups where you can freely share what you're feeling and get some much needed support/friendship.

Reading your initial discussion and the replies I do hear/feel your frustration. Keep talking to us about it all. Anything you want to share with us will be read with concern and good wishes for you.

BTW Clarinet2 doesn't have her computer available right now but will be in touch with you soon. For now, if there are any questions for her send them to me and I will forwrd them to her.

be strong,
angie
 
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clarinet2 replied to chomper99's response:
Chomper,
Did you know that some seizure medications are also used for depression and anxiety? I work in a pharmacy department in a hospital and asked many questions to my coworkers who are pharmacists with doctor degrees regarding seizure medications.

Depression and anxiety is something to confront now. Just because you see a doctor for issues concerning depression does not mean that you need to be admitted to a psych ward. We just need to reach out for help. I was advised to seek support through support groups and also through doctors due to my depression and low self esteem. At first I thought the doctor was wrong, but I went forward and took the first step for help which was a support group.

The support group helped to open my eyes and also to discuss my fears and frustrations. It can be like an AA group to share your stories, but also to reach out for support from others who may be struggling with the same difficulties and to learn how others handle the stress of life.

If you ever are prescribed medications in the future by a physician I would advise you not to stop cold turkey or try to adjust the medications on your own.

Every person has a different metabolism and some need more mg amount and others less. Medications can take 2-4 months before we see or feel results, they are not instant.

Good luck with your future, you have the support from Epiland.
 
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galivantstom replied to clarinet2's response:
Add to those drug usages that some are used for the treatment of migraines, and bi polar disease. One is being used, off label, to aid in weight loss.


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