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Old 08-31-2007, 08:17 PM   #1
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Question Advice needed on temporal lobe surgery

This is my first time on here. To begin with I had a concussion when I was 19 months old and shortly afterwards, I started having seizures. I'm not sure what type they were. I never had another seizure until I was in 6th grade. My grandfather said he had them when he was young but it could never be proven mine are inherited from him. I am 33 and still having seizures and am taking max amounts of Lyrica, Carbatrol, and Topamax, 14 pills a day. I saw a neurosurgeon this month and he is suggesting I have the left temporal lobe lobectomy and giving me a 70% chance it will cure the seizures. Also, my neurologist is suggesting me having the surgery. They said I am a good candidate for it. I have had all the tests done, Wada, monitoring, etc. They said there is a small scar tissue on the left lobe and believe the seizures are coming from this area. I have some memory on my left but the majority of my memory is on the right. They also believe the scar tissue happened from prolonged seizures over time. I would appreciate anybody's input on the surgery or anyone who has mesial sclerosis like I do. I have alot of questions I'd like to ask to anyone who has gone through with it or who has mesial sclerosis. Thank you

 
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Old 08-31-2007, 09:46 PM   #2
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Re: Advice needed on temporal lobe surgery

Mesiotemporal sclerosis is often caused by childhood febrile seizures... and is a common reason for epilepsy surgery since the area can be seen and removed. Many people report vast improvement in their seizures.

 
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Old 09-01-2007, 01:37 PM   #3
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Re: Advice needed on temporal lobe surgery

hello auxier07, I suffered from right mesial temporal sclerosis for 20 years since I was 6 also due to hitting my head when i was six. I was on different AEMs since i was 17, but they couldnt help me. So I decided to undergo surgery for the sclerosis four months ago, and I've been seizure free since then. it wasnt easy and I underwent many tests, but i dont regret it because I was having seizures every month around my menstrual cycle and especialy at bedtime and mornings. Any questions u may have ask me, I can answer them as best as i can... What have the neuros told u?

 
Old 09-01-2007, 08:24 PM   #4
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Re: Advice needed on temporal lobe surgery

Thank you for responding. They have reviewed everything and said I was a good candidate for the surgery. They said meds would not help control my seizures and I have tried other meds in the past that didn't work either. If I do decide to have the surgery it would be around the first of the year. The neurosurgeon told me eventually the seizures could possibly get worse as I get older and the meds I'm taking now wouldn't help any. He said the surgery could last between 5-6 hours. After the surgery did you have any terrible headaches? I've read some people do. Do you have a job? If so how did the surgery affect your work? My job has alot of duties with computers and answering phones and paperwork. I'm concerned I won't be able to perform as well after the surgery when I return to work. And I'm also worried the surgery won't get rid of the seizures, which I know that is a chance of happening. Sorry, so many questions. I don't know anyone who has TLE similar to mine and I just started checking out the forums. Thank you for replying.

 
Old 09-04-2007, 12:14 PM   #5
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Re: Advice needed on temporal lobe surgery

my pleasure in helping you. I was very nervous myself, meds would help my seizures either and this was my only way out, so i researched just like u and asked ques.. To start is not an easy operation, mine was 8 hours long. I was in ICU for 4 days because my fever wouldnt go down n they had me on antibiotics. I was then placed on a regular room for 5 more days and then discharged. At home recup was not easy at all. It wasnt the headaches that bothered me, cause I was able to mentaly work with them, but the sleeping sittin up, the jaw problems and eating changes, I lost my upper left eye vision for life and adjusting have been deficult, but not impossible so Im seeing neuro eye doctor next week. after three weeks I thought I was better and ended up in the hospital w an enxiety attack. ur body will need plenty of time to recup so u need to take it easy. Im an elementary school teacher, but havent gone back to work due to me eyes and unable to drive. It takes 8-15 weeks depending for someone to return to work, so dont rush it. Your job sounds easier but ur brain will need to take it easy so it can heal better, and noise will bother u for a while as well as lights. Make sure u dont do any bending, lifting, pushing or extranious moves that can hurt ur head, it need to heal in n out. i thought they were just cutting on my head, but my surgeon started from my side burn up to my head, so my face was swollen for 2 weeks, n till today my mouth dont open more than 3 cm. Anyways not all surgeons or operations r the same so talk to ur surgeon. it took me 3-4 months to get back to my oldself, but I since Im seizure free now, during my cicle changes I go through some depresions and mood changes but its normal since my brain is still healing. I have noticed an improvement in my memory compared to b4. I think u'll b just fine, especially cause ur researching like i did, and mentally u know is 4 the better. make sure your not alone through this suregry and recovery period, because u'll going to need people to get things and do things for u since u wont b able to. b sure to educate your family n everyone else of the process n surgery so they dont worry and they can b ready. Trust me it was hard but worth it, so stay positive and keep the faith, it's the only thing that helped me mentally through the entire thing...

Last edited by 030free; 09-04-2007 at 12:16 PM. Reason: adding

 
Old 09-06-2007, 04:51 PM   #6
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Re: Advice needed on temporal lobe surgery

I'm glad you are considering the surgery. My daughter had a right temporal lobectomy for complex partial seizures in Dec. 06. (she is 36 years old and had a febrile convulsion at age 13 months which is probably the cause of her seizures). She has never regretted the decision. She has not had any seizures since the surgery. She did have a couple of weeks of headaches and jaw pain, but has been feeling wonderful ever since. When she told her neurologist how great she feels both physically and mentally, he said many of his surgery patients report feeling better than they ever have following surgery.
My daughter is a CPA (tax accountant in a large firm) and was a little concerned about performing well after surgery. She went into the 2007 tax season working 12 hour days, feeling better than before the surgery. The WADA test is a good indicator of memory after surgery.

Everyone responds differently to surgery but complications are usually not severe. Some do have vision problems... my daughter does not have any.

Let us know what you decide to do. Nan

Last edited by nan2; 09-06-2007 at 04:52 PM.

 
Old 09-07-2007, 10:11 AM   #7
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Re: Advice needed on temporal lobe surgery

hi nan2 is how r u? and hows ur daughter? been trying to contact u and Cheri for a while, if u have a chance check out the poste i wrote to u guys... Auxier I hope ur feeling more comfortable w the surgery c-ing that is very common and some of us have done it. It's only a matter of time for recovery, but the most important thing is u being free and of the meds.. remeber we r here for u and write to us for any questions.

 
Old 05-27-2008, 12:36 PM   #8
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Question Re: Advice needed on temporal lobe surgery

I too am thinking of having this surgery but any very scared--my life on meds is not terrible, but I sure would like to by off them--I have a few pet. mal seizures every other week--they say that I am a good candidate for surgery, but I am an artist and am very worried about complications, especially visual.. any help or advice--PLEASE HELP!!!!!

 
Old 05-27-2008, 08:20 PM   #9
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Re: Advice needed on temporal lobe surgery

Quote:
Originally Posted by mjerik58 View Post
I too am thinking of having this surgery but any very scared--my life on meds is not terrible, but I sure would like to by off them--I have a few pet. mal seizures every other week--they say that I am a good candidate for surgery, but I am an artist and am very worried about complications, especially visual.. any help or advice--PLEASE HELP!!!!!
Welcome to the boards, I had my surgery last year I was tired of the meds too, and so far 13 months later Im seizure free, Thank God. Yes its not an easy decision to make but if the docs give you a good percentage of getting better than living with epilepsy, y not do it. I had right anterior temporal lobectomy at 26yrs old, and Im glad I did it now and not later. Yes Im still on (keppra and trileptal) but they will start tampering off next year. You said you are a candidate, what surgery would you have? (right or left lobe?) did you do all the necessary test (eegs, Wada, and the others?)

 
Old 06-06-2008, 01:29 PM   #10
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Question Re: Advice needed on temporal lobe surgery

thank you so much for taking the time to reply to my need for surgery. It sounds like you had a rough experience! Were you seizures bad (please describe)? Or, did you mainly want to get off the medicine like I desire? Your hospital stay did not sound easy----I'm hoping they can medicate me greatly so I don't feel much pain and hardly remember the experience. Your losing vision in your left eye is so scary to me. Is it your complete vision of your eye? How extensive? Hope your visit with the opthomolgidtist is ist is beneficial.
I can relate to your anxiety and depression. I don't have anxiety anymore since I've been on all this medication! and, I haven't been depressed in years. However, I'm so afraid if I lost any of my vision, I'd go into it greatly. How are you able to adjust? Well, both my neurologist and brain surgeon both think I should have the surgery. My neurologis was the one who first suggested because I'm on a lot of medicine and I'm still having seizures. After a visit with them I feel so positive, and then when I've been home a few days, I think "How do I know if I should do this? What if something serious goes wrong, lasting side effects????? I really don'g mind my seizures anymore--they are only petite mal and only make me kind of out of it, sometimes, wiped out, with a slight headache. But the positive of them is I'm soooooooooooo relaxed--like I observe life from a totally "outside" perspective. I hope you can understand this, as you know what having a seizure is like. Anyways, I think, "Oh, this isn't soooo bad---things could get worse. And then, I think, boy, would it be wonderful to be clear-headed again after being cloudy for six years--also not so physically dragging every afternoon that I need an hour nap, and if I don't have one I feel even more cloudy headed and increase my chances of a petite mal. I also have faith a nd nd trust in God; I continually pray about his will for me to have surgery---sometimes I'm postive about having it, and then I think, "Maybe that's because I desire the benefits--who wouldn't? But then my neurologist was the one to suggest it, and I am a good canidate.........And, I think I would have felt extremely disappointd had I not been a canidate.........All this thinking seems to be at the back of my mind every day. This message explains exactly how I am feeling. Thank you so much for responding to me and I would love it if you would tell me of what you think of my situation.

 
Old 06-06-2008, 06:36 PM   #11
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Re: Advice needed on temporal lobe surgery

Hi again, I so totally understand you and your thinking (been there done that...lol) anyways to start I had minor seizures (complex partials) and meds would not help after so many yrs and so many kinds. I did decide to have the surgery for one because Im tired of the meds and 2nd because I hated as you said the feelings it gave me and fears. I no longer wanted that life even if I had to go through a bit of pain. It took 2 yrs to get ready, 2 hopsital because I went for a second opinion and I bought books and studied all about my surgery until I felt ready mentally. yes fear is natural for such an operation but as I was told by others the results are worth the process. I underwent all the test necessary except for 2 which my neuro found unnecessary since I had sclerosis (dead tissue) and he knew exactly where to cut, i did lots of researched and found that my risk for side effects were much lower than those who undergo left temporal (this is more risky). So I wrote down all questions, sat with my surgeon and he explained all side effects procedures and post surgical effects I would undergo. Yes I knew I was going to lose my left eye upper corner vision, but it was just the corner I can see perfectly 20/20 (after blurry vision went away 2 month post surgery). It doesnt bother me and I cant really tell, but not everyone has this side effect, mine was due to removing the anterior portion of my right lobe which is connected to vision. You just ask your neuro-surgeon what surgery your having and its effects on motor-skills, speech, vision, and memory, everyone has different effects, and some have none (but overall its worth it!).. Let me tell you about my operation last year; after having lots of testing done and studying all about my surgery I was given the date a month prior. I saw the live surgery on the internet because personally it helped me know what was going to occur (i was a nursing student I went in 4-18-07 @ 6am and surgery took 8 hours, yes I was totaly under anasthesia not awake this depends on the type of surgery. I had lots of pain the next few days but they kept me on pain killers through the IV which allowed me to sleep for days. Four days in ICU due to non-stop high fevers so they kept me on antibiotics too, on the 5th day I went to my own room. on the 9th day I was discharged and the real recovery began @ home. Yes it was a slow recovery and I landed in the ER with an anxiety attack because I rushed my recovery buit later learned to calm down, it takes time. After discharged I took no meds home for pain because I had acustomed to the throbbing that it didnt bother me as much (this depends on the person) doc says I was strong.. In the overall aside from the pain Honestly it was worth it because since before surgery I have not had another seizure It feels great. I have healed good and my neuro-spych eval showed inprovements as well. Im teaching again and next yr should be off the meds hopefully. I say talk to your neuro and surgeon, ask ques, keep family and friends close they will support you as well as us, and study your surgery until your confident about it. Yes fear its going to be there until you enter the OR but remember its worth it. I believe In God also and I prayed everyday with chuch members and I knew in my heart I needed to do this to free my life and move on with making a family. Trust me, many of my friends here and others have done this surgery and its been so sucessful because science its so advanced and everyday brain surgeries are being done that is more simple. I really hope you think about it and decide to do it, because if Docs say it will help you they know what they are doing. Surgery helped my anxiety and panic attacks disapear and my health all together have improved, Im much happier too. Hope to hear from you, Keep me posted Laura

Last edited by 030free; 06-06-2008 at 06:36 PM. Reason: add

 
Old 06-06-2008, 07:44 PM   #12
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Post Re: Advice needed on temporal lobe surgery

Dear Laura, Thank you so much for responding to my message. My surgery needs to be done on my left temporal lobe (I can't remember the name of the surger!) I have a scar, probably from birth on the upper (anterior) portion of my temporal lobe. I guess they would not take out all of it-----mainly the front portion. How come this is more risky than right temporal lobe surgery? I see all our abilities, bodily movement, abstract thinking, etc. as important.? It's great to hear that you really feel better. When will you be off your medicine? Are you currently on a lower dosage? You must be doing well id you're back to teaching. Thanks again for your response. M.

 
Old 06-06-2008, 10:44 PM   #13
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Re: Advice needed on temporal lobe surgery

the hemespheres althought they work together to send information and receive the information each has its job. The left side of the brain deals more with language and helps to analyze information given to the brain. If you injure the left side of the brain, you're aware that things aren't working (the right hemisphere is doing its job) but are unable to solve complex problems or do a complex activity. People with left hemisphere injuries tend to be more depressed, have more organizational problems, and have problems using language. It deals mostly with memory, motor skills, emotions, and speech, and I heard from friends who had it, that they keep you awake during the surgery to make sure they are not touching the good areas. The right side deals more with vision memory, and connecting the information from the left lobe to make sense of it. I hope your following along, sarch it up and read about the differences, but yes majority of friends had left surgery but they were great as long as your prepared. Yes more test will be conducted such as EEGs, MRIs, PET, CAT scans, and the Wada but they give surgeon lots of info as to where your seizures are coming from. Yes Im still on my meds max doce Keppra(3000mg/day, and trileptal 1200mg/day) morning and night, but I my hope is to tamper off next April when I hit the 2 yr mark. When is your next appoint?

 
Old 06-09-2008, 10:21 AM   #14
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Question Re: Advice needed on temporal lobe surgery

Dear Laura: This is mjerik58 again! I realize fully now that my surgery would involve removal of most of the left hippocampus, but not any of the left temporal lobe. The surgeons would just have to go around the temporal lobe, but not cut into it, as my neurologist (on a brain model) showed me it is shaped like a thick tube all wound on itself. Is this the same kind of surgery you had on your right temporal lobe, or did you have some of your temporal lobe removed? I really would like to be off medication and am feeling much more positive about surgery all the time, but then a "small thought will come into my head, like, "You don't need to complicate your life---your'e doing just fine--a slower, spacey life, with no driving (less running around), a pet mal seizure and feeling wiped out (but you know it will be over in a day.) I'm used to that because I've had diabetes for many years. All the above thinking comes because I think what if some lasting complication comes ? And I'll think, mjerik58, you chose this! ie. I worry about something going wrong. Other times I'll read about the surgery, and talk wiith my doctors, and I feel positive about having it!? How does all this sound to you---a person who once faced the same experience????????? Thanks for your input.

 
Old 06-09-2008, 11:06 AM   #15
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Re: Advice needed on temporal lobe surgery

Hi Auxier07. I suffered a couple febrile convulsions when I was teething (about 10 months and 18 months old). After that, there was no sign of seizure activity until I was 10 years old and starting having menstrual cycles. I then had seizures until I was 30 years old and had a right temporal lobectomy. I too went through all the tests and was told that the seizures were coming from an area of scar tissue likely caused by the febrile convulsions. If your doctors think you are a good candidate, I would highly recommend the surgery. It has been over four years since I had mine. During that time, I have had auras when I don't get enough sleep or am exposed to other things that previously triggered my seizures. My EEG still shows seizure-like activity but I have not had a full-blown seizure since the day of my surgery.

Last edited by Gina04; 06-09-2008 at 08:50 PM.

 
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