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Anyone had surgery on left temporal lobe?

I am considering having a left temporal lobectomy and would very much like to hear from others who have undergone this testing and surgery. And, since you have undergone this surgery and experienced it all, I would like to ask you a couple things. I need to tell you my story so you know where I'm coming from. I am a 50 year old woman living in South Carolina. When I was 24 years old I was in college and working and had never had any type of seizure. Then one day while at work I started having grand mal seizures. I don't remember that at all; it's like the next thing I remember is I woke up in the hospital and it was 2 1/2 months later. I had been having many grand mal seizures every day. I was being administered megadoses of dilantin and phenobarbital. My mother believes in the natural cure for everything and insisted they give me shots of B6. Whether it was the B6 or perhaps the drugs started affecting me more, I don't know; but my seizures lessened and eventually I was able to go home. To make a long story short, Over the next 22 years I took different levels of dilantin and phenobarbital and I probably have only had a total of 5 or 6 more grand mal seizures, the last one being probably 10 years ago. But I still have what I call petit mal seizures. These are usually chills down the left side of my body, then I get confused; I know that I'm having a problem, but I can't think clearly and no matter how hard I try to carefully and slowly speak my words they come out what seems right to me . . . but I learn later, didn't make any sense at all. A couple of years ago my doctor retired and I had to find another neurologist to do my drug level testings and prescribe my drugs. This doctor wanted to try some other alternative drugs, so we tried almost all of them. I really hated Topamax, but they all had some major drawbacks; I wished I had never tried to switch from Dilantin. I think the doctor gave up and referred me to a epilepsy specialist in another city about 150 miles away. He tried some more switching and for the last year I've been on Keppra and Trileptal. I went to see him yesterday, not because of any new problems, but because I have to see him at least once a year to get my prescriptions. Last year this doctor determined that I had sleep apnea problems as well and got me sleeping with a CPAP device that has helped that. I think he is a good doctor; I've read articles by him and about him. But I guess I wonder if all doctors aren't making a living . . . just like the rest of the world. Yesterday he told me that I should be seizure free; but he is calling the events that I have now seizures. I guess they are still petit mal seizures, but they are usually just a period of confusion; I can't think right and I can't talk right. I usually don't even have the chills now. But yesterday he told me I shouldn't be driving, that he was legally bound to tell me I should not drive. How can I work and do all of the errands I have to do without driving? I'm married but we did not have any children; I guess I was always afraid I would pass on the tendency to have the medical problems I've had to a child . . . or maybe I was just using that as an excuse because I was never ready for the responsibility. I don't know, but I don't need to get off on another subject. What my neurologist told me yesterday was that they had pretty much tried all of the feasible anti-seizure meds and I am still not seizure free. He showed me, from my last MRI, the area on my left temporal lobe where the scar tissue is. I don't know how it became scarred, but I did ride horses and take a few falls when I was a kid; but I guess that's one of those things I'll never know. The part of my brain that is affected is where speech and memory are affected. I'm sure I don't need to be telling you this. What I have to determine at this point is what my best options are. When I went to the doctor yesterday, I was just going so I could get my prescriptions refilled. Now the doctor has increased my prescriptions to 1000 mg Keppra and 300 mg Trileptal twice a day; but he has already told me he would be surprised if that takes away any and all of my "problems". He suggested that I go through the series of tests that would allow him and a group of doctors to determine if I was a good candidate for a left temporal lobectomy. As I'm sure you can understand, this terrifies me. I'm living a fairly normal life now. I work full time, my husband and I just celebrated our 25th anniversary, and I just turned 50 years old. It's kind of like; why now? I don't want to mess up what I've got now! But then he throws in this part about me not being able to drive (like if I were to be driving and get in an accident that was determined to be my fault . . . whether or not I was having a seizure . . . I could be sued for everything I have. I do drive every day. And I've never had a seizure while driving, but I can understand where it would be a problem of course. And he hangs that carrot of being "able to be seizure free without taking medications . . . eventually". What I'm trying to decide is whether I should even consider surgery or not when all I'm having is petit mal problems. I have not had a grand mal seizure in pobably 10 years; maybe longer. I don't know if the benefits of being able to eventually get of the medications would be worth the risks I would be taking to have that kind of surgery. I would like to talk with other folks who have been where I am now. How did you decide? Were you still having grand mal seizures when you made that decision? And if you had not been, what do you think you would have done? Have you been completely seizure free; not even any confusion or memory problems? I do have some memory problems too, but I'm not sure surgery could actually "improve" that, perhaps it just wouldn't get any worse. I just try extra hard and I get by. I'm trying to figure out whether being seizure free - in my case, where I'm not having grand mal seizures, would be worth the risks I would be taking by having a left temporal lobectomy. Sorry to have gone on so long; I'm just looking for some input from someone who has been there. I would very much like to hear back from you. What do you think you would do - in my situation - knowing what you know?

Comments

have had test for a number of

have had test for a number of years now as tablets just are not working. I've had epilepsy since I was 13 months old and I'm now 39. The doctors have been pushing me to have surgery for years now but I've always held back as I'm a little scared to what I'll be like when I'm out of surgery. Once the brain is taken away there is nothing you can do to reverse time if it goes wrong, your brain is not a normal computer. Think carefully before making any decisions just like I'm doing, think of what the worst outcome could be and if you could cope with it physically and mentally. If you think you can then concider surgery. Good luck with it all :) 

Re: Anyone had surgery on left temporal lobe?

I went through surgery on my left temporal lobe in 1996.  For me the results were very positive.  I was having daily seizures before going through surgery. 

Nuero surgery can definitly cause complications.  I stopped having seizures within two months of surgery.  I also has visual hallucinations for about six months after surgery, I have aphasia, I went blind in part of my periferal vision.  My memory improved from right before surgery (I can barely remember the months just pior to surgery).  I had very good memory when I went through the psych testing they do prior to surgery and I now don't have memory problems.

I don't think it is a minor surgery in any way, but if the seizures or the medication are effecting your life a lot then you might consider going through the testing at least.  You can always back out along the way.   

This is great stuff! Very

This is great stuff! Very honest and practical. I really enjoyed this post.https://blog.mindvalley.com/temporal-lobe/

I am 57, have had seizures

I am 57, have had seizures for about 20 years and am currently considering surgery for left temporal lobe epilepsy because of ongoing seizures, simple partial and complex partial for about 20 years.   I have found this discussion thread very helpful.  Regarding stopping driving, I was in denial, like you, for some time, even though I found myself in the ditch a few times with no explanation or recollection of events leading up to the accident.   After being honest with myself, I had to admit that the cause of these accidents were seizures.  Fortunately, in all events I found myself off the road on my side of the road.   I could have just as easily crossed the centre line and ended up in a head on collision with an oncoming vehicle killing myself and/or people in another car.   So, please be honest with yourself.   Not driving is a significant loss of personal freedom, but is it worth risking your life and the lives of others?   Your husband will be a penniless widower after having been sued as he suggests and your children, if you have any, will also be living in poverty without a mother.  If you don't have public transportation in your area, this may require a change in lifestyle and a change of career depending or the cooperation you can get from your current employer regarding teleworking arrangements or other possibilities.   Please, please stop driving.   It frightens me to know that there are other drivers on the road gambling with other peoples lives the same way that I did.    So, having said that, I will continue to follow this discussion and report on my decision regarding surgery and outcomes.  I am writing this from my bed in the Montreal Neurological Hospital where I have plenty of time to pass while undergoing continuous EEG  to record seizure activity.

Re: Anyone had surgery on left temporal lobe?

Hi, I am scheduled for a Temporal lobectomy in a month, I have had epilepsy since I was 3, and now I am approaching 40. I had grand mal seizures only as a child, was on dilantin until I was 13, which of course I had to come off of because by gums were completely destroyed. I  never had any more grand mals after coming of dilantin, for that reason I was never seen by a neurologist again until my late 20's. All the while though I was having partial complex seizures, I would try to describe them to my  doctors but I guess I failed to articulate well enough what I was feeling eg( deja vu, spaced out). My verbal memory as well as my  memory of events has become more and more impaired. Apparently the volume of my hippocampus was severely impacted by my early seizures.

I am currently on Depakote, Tegretol and Valium and I still have aura's and occaisonal absence seizures, so surgery is pretty much the only option, considering I may develop dementia over the next 10 years. Despite all of these factors, part of me wonders if the surgery is worth it. It may stop the seizures, but what about the damage thats been done, the fact that I am disabled by bipolar disorder, ocd and memory problems, so I see where your coming from, I guess I'm looking for answers as much as you are. I wish I had known about this 20 years ago.

Re: Anyone had surgery on left temporal lobe?

Hi Gnostic, 

Sounds like we've got some things in common.  I assume you aren't having any grand mal seizures, but you still have petit mal sessions these days.  How did you decide that surgery was what you decided to do?  I'm still trying to decide if I shoud do that, since I don't have grand mals myself, but I do still have some problems.  Here's a video that I found to be interesting.  The doctor who is doing this left temporal lobectomy is who will be doing my surgery (or at least the week-long testing that takes place in June to determine if I should have the surgery).  Are you able to drive?  And are you able to work?   

http://www1.wfubmc.edu/webcasts/Archives/Temporal+Lobectomy.htm

 

Re: Anyone had surgery on left temporal lobe?

I had surgery on my left temporal lobe in 1997. I have been seizure free since. Surgery is a very scary event to think about. However, it has been proven that 80% of individuals who have had their temporal lobe removed have improved in some fashion. It has also been proven that lobotomy is ranked as the most successful surgery for individuals with Epilepsy. Doctors take many steps to make sure that you are a candidate for surgery.

If medicine is working or controlling most of your seizures, then generally most medics will state it may be better to stay on medicine. However, if nothing is working after a long history of treatment, then maybe surgery is an answer. The only one you can really give the honest answer if surgery is the method you want to take is yourself.

I was asked by the North Carolina Epilepsy Foundation to be a guest speaker. Therefore, tomorrow I will be giving a presentation on surgery and staying motivated in Charlotte, NC. Below is information about the presentation.

    Charlotte Epilepsy Support Group
    7:00pm Tuesday, March 15th
    6th Floor Courtyard Conference Rm
    Presbyterian Hospital
    200 Hawthorne Ln

    Everyone is welcome; the one with epilepsy, parent, spouse, best friend, etc.
    Information: CharNCEpilepsySupport@att.net or 704-376-3150 or 1-800-642-0500

I wish everyone the best of luck

composer25

Re: Anyone had surgery on left temporal lobe?

It sounds like your surgery is scheduled for a month or so ahead of mine.  And we are about ten years apart.  I'm 51 with my seizures starting at 24 years old.  I was on Dilantin and Phenobarbital until about 4 years ago.  Do you actually have grand mal seizures?  I'm just not sure I'm bad enough off to be considering brain surgery.  But I definitely understand what you're saying about how even though you weren't having grand mals for many years that you were having complex partial seizures, I try to describe my "problems" to my neurologist but I don't know that it really is possible to articulate exactly what's going on during these "problem times".  I don't describe my feelings as "deja vu" like you did, but spaced out is a good explanation.  I'm not able to talk right, even though I'm trying REAL HARD to do so.  And, like you, my verbal memory as well as my  memory of events has become more and more impaired.  You probably do like I do and make extra and many attempts to make it easier for yourself . . . like sticky notes everywhere and sending emails to yourself to remember to do stuff, etc.  I too probably have had the volume of my hippocampus impacted by some of my seizures back in the late 80s.

 I would love to talk with you on the telephone.  You and I are facing the same kind of thing and it would be great to be able to talk about it with someone who is most personally interested.  My phone number is 803.413.7952.  That's my cell phone; give me a call if you think it would be helpful for you.  I don't know that I know anything more about what happens during the events of surgery, but I think we've got something to share.  I'm not sure if what I have is what I've hear a lot of people call "auras"; I'll get chills/tingles on the left side of my body only; starting at the top of my head and going down my left side.  It's strange; then I'll not really be able to function in thought quite right.  I know better than to try to talk then.  I can't read then either; nothing gets through my brain.  But I know it's happening and if I wait a while it will eventually go away.  Afterward I'm quite tired. 

Why did you say that you may develop dementia over the next 10 years?  Is this something that often affects folks like us?  And you say you're not sure if the surgery is worth it because of the damage that has already been done.  Well think about the other option; having more damage be done and getting worse.  I've got a lot of the same problems that you do, but I sure would like to feel like the problem that I've got in my brain caused by the dead brain tissue has been removed and my brain has been given a new chance to reroute stuff and help me to think more clearly.  I guess I'm trying to say that I too see where you're coming from and I'm still looking for answers too and wish this type of surgery was as accepted/well-known/good as it is now.  But we've got to deal with what we've got . .  to the best of our abilities and for our own sake.  Please give me a call if you care to talk.

 

Re: Anyone had surgery on left temporal lobe?

BrainLes is what I am. Partial Left Temporal lobectomy in 1998 at Walter Reed. Wonderful doctors who didn't try to push me for surgery. One of the most important things was to let me know that I could just keep trying meds and be happy with whatever improvement I had. My grand mals were controlled with Dilantin. Just petit mals getting in my way during menstral times. There's meds to take during that time of the month. The med reduces the water/fluid build up around the brain that happens during this time. Having that build up causes those seizures. I take Acetazolamide (Diamox) during that time.

I'm irritated for you. I can't believe your doctor is pushing at you for surgery. Sounds like a good doc who has let his ego get too big. He wants to play too much, if you ask me. I've had docs like that and I don't put up with them. I chose to have the surgery back then. I crossed my fingers that I'd be rid of epilepsy. If anything else, I knew I'd at least have improvement. Even if it wasn't completely "cured". I still have epilepsy. The seizures are controlled with meds. I just hate my meds:-)

Why did your doc decide to up your meds? I'm trying different meds now because of side effects I can't stand. Years ago when I was on Dilantin (I've been on several others too)they wouldn't up my amount unless I told them I was having problems. Doctors don't up you because the blood test shows you are at a low level unless you say you're having problems. They say, "Hey, if it's working at that lower level, leave it be.

What if you had brain surgery and still have seizures? You'd still take medicine to controll them. If they are controlled now, you don't need surgery. Extreme cases that can't be controlled need surgery. Before any surgery you need to try different meds and even combinations. Each case is different and your doctor shouldn't give up on you, take the easy way out with surgery, then take credit while he's at it. Just gives him more case info to write about. Does his fame or patient mean more to him?

I'll add more later when I have time. Just start with a new neurologist and tell them you want to deal with meds being worked with first, that you don't want to consider surgery yet like this other neurologist of yours has suddenly come up with.

You control things. They work for you!! That means they need to work with you on these things, not against you. I've had several docs through my years and each one has something new to offer. That's one good thing about my military life. You move and deal with new docs who are open minded. They want to help. More later when I calm down
:-)

Re: Anyone had surgery on left temporal lobe?

Thanks for your reply BrainLes :) 

 I don't know if my neuorologist is pushing me for surgery; he is saying he thinks I am a good candidate for surgery.  I was on Dilantin and Phenobarbital for almost 20 years, but still had frequent petit mals and occassional grand mals.  After that I tried all the newer ones, Lamictal, Tegretol, probably almost all of them.  Now I'm on Keppra and Trileptal, which I would say is working better for me than any other drugs/combos did.  I haven't had a grand mal seizure since before I started on these drugs.  But I do still  have petit mal seizures which definitely affects just about every part of my life. 

 But the thing is, I do function.  I work, I live a fairly normal life, and I even drive.  The state I live in doesn't require doctors to report patients who have seizures and I have never had a grand mal while driving or had a petit mal where I couldn't get off of the road.  I know it's probably not the best thing for me to drive, and my husband drives whenever we're both in the car, but I have to work.

 I'm thinking now that I may go ahead and get the next MRI and EEG; see if he can tell if it is spreading from the left side to the right.  That's what I worry about now; the doc told me if it spreads from the left side of my brain to the right, surgery would no longer be an option for me.  But I don't know if he said that to hurry up my decision, or whether that's because of where my problem area is located.

Nylrad

 

 

Re: Anyone had surgery on left temporal lobe?

This isn't completely relevent, btu I too have mroe seizures around my period.  When I finally switched to a female neurologist, she instantly reccommended that i go on the birth control pill continuously.  In each monthly pack, there's a week of sugar pills, so that you still geta period, and she told me to skip them.  My gynocologist also does this, so I knwo it's safe, and I've had much fewer seizures since then.  I know some people don't like the birth control pill for personal reasons, but it's just a suggestion that worked for me. 

Re: Re: Anyone had surgery on left temporal lobe?

Oh, I was also using a CPAP machine for severe sleep apnea. I'm skinny too. It's not usually skinny people who have such a bad problem like I do. So they told me... I got sick of the machine and quit after a year of use. Bad patient, I know... I'm trying to quit smoking - have cut down a lot for the last year and my husband doesn't hear me snore anything like before. I hope that means I don't quit breathing. Smokers also have sleep apnea problems.

I was on Depakote for over a year after quitting my life of using Dilantin. It was great to be awake for once in my life. That was without the CPAP too. My side effects of shaking bad got to be too much. I've always been that way, it just got more extreme. Next thing I knew I was losing too much hair. Being scared to try other meds, I tried going back to Dilantin. It just hit me too bad. My old dose turned into being an over-dose. Lowering it didn't help my being tired. That's why I'm trying Keppra now. I'm still on the beginning days of it. I'm off Dilantin and still tired. I'm crossing my fingers that the tiredness won't last.

In the meantime I was diagnosed with a mild form of Lupus by a dermatologist. Affecting the skin only. That was after my regular doc sent me to him because other meds weren't fixing what seemed to be ring-worm. I've had ring worm before and was surprised how much they look the same.

My neurologist now knows about Lupus. He also noticed my shakes and gave it a name. Told me he could give me some particular med to fix that. As if it was a known condition that's easily fixed. My older brother and I have this shaking problem. I never got back with him on that because I was more into talking about my epilepsy meds. I'll get around to bringing that up again at my next appointment.

When you have all this, it makes you wonder if you should just go back to the med that you were awake on (Depakote) for once in your life, have the neurologist give you the other med to calm the shaking
that just worsens with depakote... I still don't remember the name he gave it. Maybe the shakes would be controlled and I could be completely awake with Depakote. Wouldn't that be great!!? If I don't have improvement with this new med Keppra, I'll be back to nag my neurologist.

Also, before surgery in 98' my surgeon thought I should try the Ketogenic diet before surgery. It was new then. That's still out there as another helpful thing. I just never bothered at the time. There's more options these days. Ketogenic is still there and so are lots of meds. Just please try different docs. Not one surgeon will promise things being completely fixed. Surgery is a choice. No doctor should try and force it on you.

The med I use during that "time of the month" controls my petits. We women change as we age. Different meds can help. The start of menopause can be having an effect on you. So, you work with that. Brain surgery shouldn't be the quick answer. You could see a brain surgeon and let him know how you feel and even the surgeon would try and work with you using everything else before trying surgery.

Make sure you know everything that's open to you.

Re: Re: Re: Anyone had surgery on left temporal lobe?

Anne kope

Hey Im scared out here too!! I have been just finally diagnosed with
left temporal epilepsy from the EEG and now I have to get a MRI.
I had seizures since I was a 12 that I remember. And I was on that dilantin for 35 years!!! Beward of it!! Dilantin and I were buds for years!! but it ruined all my teeth and bones in my body! i NOW have dental implants and I fell at work from dizziness and I broke my knee! My bone density tests keep decreasing!So now I got a very good
neurologist and she put me on Keppra! I have been on it for 4 weeks now and each week I do an increase of it! I so happy to be off the Dilantin! No more blood drawl levels! they only ruined my veins over all ot that!
So that is my Dilantin advice!
Now I need some reassurance about left lobe epilepsy!!
I dont think I will go to any surgeries if they are offered to me because I have read that left lobe epilepsy surgeries the patient
has a much less chance of recovering from his or her memory!!
Yet, right lobe epilepsy surgery the patient has a much higher chance of memory after surgery.
And since Ive been seizing since childhood and Im so use to medication anyway Im choosing not to opt to surgery in this new day and age. If it so shows on the MRI that it is something that has been there for years as the doctor thinks.
So that is my advice to this person on her that was asking about
left lobe epilepsy surgery!
I am 58 years old and this is my opinion!
I pray that the MRI shows just only left lobe epilepsy as the EEG showed this.

thankk you for reading this and everyone is welcome to respond to me as I would like to communicate with other epileptics.

It is like a club almost!!!

Re: Anyone had surgery on left temporal lobe?

Hi Wenko,

 Sounds like we've got a few things in common.  I was on Dilantin and Phenobarbital for a little over 20 years and now I'm on Keppra and Trileptal.  Did your problem spread from your right temporal lobe to your left?  That's what I'm worried about (only with me it would be spreading from my left temporal lobe to my right).  WHere did you read that there was more chance of memory damage in left lobe surgery?  I know that's where speech and memory are, but I've been reading things that make me believe that it's fairly common surgery now.  Although each case is different, depending on so many variables for each person. 

 I'm 51 years old and have had epilepsy since I was 24.  I'm going to have another MRI and EEG soon, as well as sleep tests (I've also got sleep apnea).  I'm just afraid to go to the next level of tests, where they induce seizures and the psychological tests (although I've been through them before, several years ago).  I'm afraid once they start inducing seizures that I'll keep having the ones, the grand mals, that I have not had in several years. 

Re: Re: Re: Re: Anyone had surgery on left temporal lobe?

Hi Anne,

Sounds like you and I have a few things in common. I appreciate your opinion. I'm doubtful that I'll ever have the temporal lobe surgery, there is just too much at risk. I'd definitely think about it long and hard if it were less risky. I had not heard what you said, about the patient having left lobe epilepsy surgeries having not as good of a chance of recovering their memory. My doctor has not told me that. Unfortunately we can't decide where we are affected, but memory is VERY important to all of us!

So when do you get your MRI? Are you having grand mal seizures frequently? Sounds like Keppra may be working for you. I take Keppra and Trileptal; my neurologist just increased the level of both of them, so I'm on the same week at a time increase kind of plan that you're doing now too. I was glad to get off of Dilantin too; and phenobarbital. I'm not sure how to give you the reassurance about left lobe epilepsy that you're looking for. Tell me how your problems affect you. Are you able to work and drive?

I'm used to medications too, but hey, wouldn't it be great to be able to get off of all of it? I'm not even sure how it would feel now. But I do still have some nausea and dizziness when my medication levels are being increased. How is the Keppra feeling to you? I'd like to hear back from you, I'll check back in a day or so.

Re: Re: Re: Re: Re: Anyone had surgery on left temporal lobe?

Hi,
I had the surgery and would not just recommend it because it has gone well for me since then, but regarding memory loss my doctor did not tell me that I was going to wake up and just remember everything I had forgotten. I know that most, if not all of what I don't remember is gone. I didn't have the surgery because I thought that my memory would return. I also had a very good understanding of my chances of being seizure free were and are. I am very fortunate to have found the right epilieptologist and of course surgeon. Like I said I would not push the surgery. I share what I have and just leave it at that. I was fortunate and do not miss seizures. I hope that we never know each other again:)

Cyndee

Re: Re: Re: Re: Re: Re: Anyone had surgery on left temporal lobe

Hi Cyndee,

Thanks for your input. I don't think I will have the temporal lobectomy, unless I start having more severe seizures than I have been having lately. If it were a simple, safe operation I'd jump at the chance to be totally seizure free without all the drugs I take several times a day. I'm still learning about the options and I appreciate your comments. Glad to know that your epileptologist and surgeon were able to attain good results for you.

Nylrad

Re: Re: Re: Anyone had surgery on left temporal lobe?

Is the shaking you have because of the Lupus? If your brother has it too, has he had a medical opinion about it? You mentioned menopause having an effect on us and I'm going through that now too. I don't plan on seeking brain surgery as the quick answer, I probably won't ever have it done. But it sure would be nice to be somewhat "normal" again. Thanks for the input; I look forward to future posts.

Re: Re: Anyone had surgery on left temporal lobe?

Take the surgery, if you ever noticed, most of the drugs you have taken don't have an exact reason in way they work. The reason you have seizures is due to scar tissue they said? I had surgery, I'm half your age. I hate to admit that the main reason I had surgery so was that I can drive again. Scientists say that humans use, what, 15% of the brain only, anyway? remove 3%... (guess) and in some situations, I'm thinking mine right now, brain waves, memory ect. travel to other parts of the brain. The reason I mentioned that is if the scar tissue is on the same side of your brain that your doctors say you mainly use. (right, or left) I went to two hospitals, recieved two opinions, totally opposite. My first doctor said that I cancel out for surgery due to the left-temporal lobe scar tissue being on the same side of my brain that I think out of due to one of their tests, (forgot the name of the test right now, this part of the memory is gradually returning)But the secong hospital I went to didn't even have me take this test. You have to figure out which is worse.. Living , healing up, possibly having a crappier short-term memory.. or, continuing having seizures, perhapse for some reason they could get worse for the "who knows where scar tissue comes from" (pot smoke) reason, and you could die on I-35 doing 75mph

Re: Anyone had surgery on left temporal lobe?

I just had left temporal lobe surgery this October after having epilepsy for 10 years. My old doctor said I never could drive nor have kids. But a nurse at the local hospital told me to get rid of that doc and his old ways and go to Albany Medical Hospital. After a year of testing there, the doctors removed the pea sized cyst in my left temporal lobe and i'm seizure free. Check out my replies to others and my Blog and you'll read all about the situation. Best of luck to you. -Kelly

Re: Anyone had surgery on left temporal lobe?

Kelly,

I am in the process of having preop testing at Albany Medical Center. My last Neuro Doc only wanted to give me more and more drugs, which made me ill..... some quality of Life huh. I read about Dr Ritacio, and how he was helping so many people become seizure free, of course I had to go see him.  Seizures are affecting my career, social life, and I can't drive. 

I would love to chat with you about your experience. 

Re: Re: Anyone had surgery on left temporal lobe?

Hey Kelly,

Happy to hear about your surgery and results! I had mine in August of last year and have been seizure free since then. Love it and do not miss seizures at all! How do I find your blog? I'll check it out after I wake up. I just took my meds and will be napping in a half hour or so:)

Cynthia

Re: Anyone had surgery on left temporal lobe?

I had a left temporal lobectomy about 4 years ago. I found it reduced seizures some ( over 400 in the previous 6 months ) but also caused other problems. They were unable to remove all the dead brain tissue caused by having seizures for over 20 years and as a child i had spinal meningitis and hydro encephylitis, then sufficient scar tissue built up from my surgeries in 1956 and 1957 that they removed about 18% of the right hemisphere and tests prior to my surgery showed that the right hemisphere function at a 10% level. They said if they removed all the dead tissue i would not be able to fuction normally.

In spite of the health problems i have had i graduated with honors from UC Berkeley, did grad school at Oregon State Univ. and the Univ. of Wash.

After the surgery i was in the hospital almost a month and for another month had to use a cane to walk and keep my balance. I was back in emergency within a week after leaving the hospital when i had one seizure after another. It was about a month later that i returned to part time work but still had seizures, but fewer than before surgery. During the first 6 months i after the surgery i had to go in for therapy to help mainly with my memory and physical dexterity.

Last year i had a Vagus Nerve Stimulator (VNS) installed and that has helped a lot more for me. I am now averaging only about 8 seizures per month. I am working full time and that includes computer work and being in the woods part time as i am a US Forest Service employee. Yes, i have worked as a Park Ranger, Forester, Computer Systems Analyst, Computer Programmer, Ecologist, Botanist and Soil Scientest for the federal government over a 30 year period. I am working full time and although i don't have the stamina i used to, ( That might be age too. ) I do most of the computer work for the crew and work part time in the woods.

Karl W. Greulich

Re: Anyone had surgery on left temporal lobe?

I had a left temporal lobectomy last August. I have not had a seizure since probably the day the surgery was performed. I started having seizures a little over twenty years ago; I was probably twenty-one or twenty-two and just had a convulsion one day. The first medication I was prescribed which started to make my gums swell was dilantin and I was a young woman. My smile was very important to me so that medication was a big no-no. I took phenobarbitol for some years and after adjusting which took a while they were pretty controlled. Eventually they were not. I took a lot of meds, they did not do what was needed in order for me to be as normal as possible. I had a VNS implanted and it worked for a very short while. It was just time for a change for me. The convulsions were almost always under control, but the simple and partial seizures were not. My memory sucked and the way that I felt because of the medications made me realize that I needed to make a change. I told my epileptologist that surgery was a consideration for me. The reason I considered surgery is not because I was having these obvious (which they may have been to other people sometimes) seizures, but because they were affecting everything; my social life, my career, my general well-being, etc. I was waiting for a bus one day and saw it coming but realized I was going to have a seizure. A couple minutes later I was sitting down and wondered if I had slid my bus pass. I got back up and did so. Looking back on that now is amusing, but it was not that day. So depression is also something I suffered from. I was not taking a medication for that. I had an accident while I was driving about four years ago and have not driven since then. I "CANNOT WAIT" until I buy my new car in 2009! How often do you have seizures? Do your seizures or medications have an affect on the way that you live? Do you think you are seeing the right doctor? I would recommend just telling him or her that you are considering the surgery or at least the testing, then go from there. The testing that has to be done gives you a little while to be ready for the surgery, but they really don't take that long. When it was time for the surgery I was in the hospital for six or seven days, but only two days after the surgery. There was very little pain afterwards. Some people may have more, but I think it depends on how certain people rate pain. To some people a headache could be terrible to others it might be bearable. As long as everything goes the way it should, patients are sent home in a couple days. I would also just get all the information that you can and ask you doctor anything that comes to mind. Find out also if there is a group that meets that you can attend. There was nothing like that for me, but a group will be starting to meet by next month. Support is very much needed. Let me know if I answered all you questions and send more if you'd like.

Re: Anyone had surgery on left temporal lobe?

My daughter just had left temporal lobe surgery 6 weeks ago. We weighed our options and she went for it. She is doing so well. No seizures so far. Her memory has not changed at all. A couple word finding problems, but she went through speech therapy. I can only speak to our experience, but my daughter is a new person. She is thrilled at the possibilty of a better quality of life with out e. I know another young man who had 6 weeks before her and he is also doing well. Surgery done by the same surgeon at OSU Medical center in Ohio. She is smiling, looking forward to driving again in 6 months. Has a whole new outlook on life. We were scared too, but we decided it was worth the risks. We're glad we did.

Re: Anyone had surgery on left temporal lobe?

Hi Cyndee,

 Thanks for responding to my post about a left temporal lobectomy.  I've been reading good and bad comments about surgery and, of course, everyones situation is a little different.  I guess I just have to weigh the two and try to make the best judgement call for me.  I think I'll go ahead and have at least the first part of the testing done; another MRI and whatever they call the testing where they induce seizures (I think to localize where the seizures are coming from).  That part scares me too.  I haven't had a grand mal in years; I'm sure there's always the chance that I would start having those again. 

 Do you know if there is an online group or blog where folks like us can meet on a regular basis; talk about what's going on in our lives?  Tell me something, Cyndee.  You said 4 years ago you were driving and had an accident and haven't driven since.  Was the accident caused because you had a seizure?  I worry about that because I do have my license and I don't want to lose it.  But I also don't want to endanger anyone; but I don't think I am.  I haven't had an  uncontrolled seizure while driving. 

My memory isn't good either; has hendered me in my career no doubt, but at least I've got what I have. I don't want to risk losing the ability to talk - or more of my memory, in an attempt to get off the drugs.  But I definitely want off the drugs too.  I'm still not sure.  Would love to hear from you and others again.

Nylrad

Re: Re: Anyone had surgery on left temporal lobe?

I would definitely like to be a part of this gorup that will be starting to meet next month. I assume you're talking about an on live chat or perhaps a web conference?

I responded to your other comment to the question I posted, but I'm still not really sure what I should or will do. Perhaps.=, like you said, I need to at least consider it some more. I know this hinders my thinking, my work, just about everything in my life. But I don't want to risk what I have in an attempt to improve other things that may or may not be reachable.

Thanks for your post, I'd be interested to hear more or chat with you and others sharing this interest.

Nylrad

Re: Re: Anyone had surgery on left temporal lobe?

Online support is very much needed since I do not drive and considering surgery....my situation

Now that I realize I'm not growing out of E I'm thinking of the surgery, will be going through the steps as of Aug. 1st...... petitmal seizures been controlled since last Aug. very minor as todate. Not really looking forward to surgery but having E since I was 15 mths has been too long and has my life is at a standstill.

Now 50 years old.....not being able to drive my entire life. Any experiences with surgery possibly effecting perifial vision....the lower right side is where my seizures are located....will find more info Aug 1. Anyone with info will help in my decisions toward surgery.

Re: Re: Anyone had surgery on left temporal lobe?

Online support is very much needed since I do not drive and considering surgery....my situation

Now that I realize I'm not growing out of E I'm thinking of the surgery, will be going through the steps as of Aug. 1st...... petitmal seizures been controlled since last Aug. very minor as todate. Not really looking forward to surgery but having E since I was 15 mths has been too long and has my life is at a standstill.

Now 50 years old.....not being able to drive my entire life. Any experiences with surgery possibly effecting perifial vision....the lower right side is where my seizures are located....will find more info Aug 1. Anyone with info will help in my decisions toward surgery.

Re: Anyone had surgery on left temporal lobe?

Hi Dee-6,

 Sounds like your situation is a lot like mine.  How are things going for your now?  Have you had the pre-surgery testing yet?

 Nylrad

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