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jdurrua

right temporal lobectomy

Has anyone in this group had or knows someone who has had a right temporal lobectomy?John

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RE: right temporal lobectomy

DUE 2 THE FACT THAT I'VE JUST 'JOINED' THIS GROUP,,,I WOULD REALLY APPRECIATE IT IF 'SOMEONE' COULD HELP ME,,ALSO THAT I'M FAIRLY NEW & DON'T KNOW MUCH ABOUT 'COMPUTER'S',,, I AM 38-YRS OLD,,HAVE 'PETITE-MAL-EPILEPSY',,& DR'S APPARENTLY ARE PLANNING 2 DO 'SURGERY' ON MY 'LEFT-SIDE' OF BRAIN,,,I'VE APPARENTLY GOT 'SEVERE-TISSUE-DAMAGE' & THEY BELIEVE THAT IF THIS IS REMOVED ,,IT MAY 'CURE' MY EPILEPSY,,, IF SOMEONE COULD HELP ME,,I WOULD REALLY BE HAPPY,,BECAUSE (SURELY YOU KNOW HOW SCARY THE DECISSION WOULD BE) PLUS THE FACT THAT I'VE BEEN 'SEVERELY-DISABLED' BY OTHER DR'S & JUST DON'T KNOW WHO 2 TRUST ANYMORE,,,THANX,,TRACEY,,

RE: right temporal lobectomy

TraceyWhat doctor are you going to John

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I had Right Temporal Lobe surgery for complex partial seizures on October 4th 2000, here in New Zealand. It was the best thing I ever did. I have had no seizures since then, and I now can drive a car. Feel free to ask me any questions you might have. Also you might find this website helpful. https://home.comcast.net/~epilepsy/index.htmlKate, New Zealand.

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Sorry for the delay getting back to you Kate.It was so good to read about how well you are doing after your surgery. Thanks for the linkJohn

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JUST JOINED THE COMMUNITY WILL HAVE EEG SOON FIND OUT IF I HAVE LEFT OR RIGTH TEMPOR AL LOBE EPILEPSY

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KateI just went in for the WADA test belive it or not it was alot of fun.So far everything points to the right BUTfor some reason when I was in for a sleep study they saw some abnormal activity on the left and so do some older EEG'sDid you have anything like thatJohn

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Hi John,I don't know, I remeber all the tests being done. And them saying that the EEG showed that all my seizures came from the right hand side of the brain. And consequently getting the letter through the mail saying I'd been accepted for the brain surgery.Kate

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I have great news everyoneJust went to the Dr yesterdayThe type of epilepsy I have and after 4 months of poking and proding Wada,eeg,pet,10daystay,mri,etc.they say I am an excelent canidate for Surgery!80-90% chance of cure and only a 10% chance the drugs will help I am going to meet the surgon the first week in JuneI could not be happier with the doctor Orrin Devinsky, MDThanks for all your help everyone.... I will keep you informedJohn

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hi my name is billy and i had right temporal lobectomy surgery in june 1998 went till jan 99 had one well they put me on lamitcal just 200 mg a day went 5 years without one and now i have had 5 in the last 6 month i know that isnt so bad  but i dont understand why but the bad thing about it is the aura feeling are never the same now the one i had in 99 i heard a bell sound that no one else heard then the one i had 6 months ago was like popping of the ears before the surgery the feeling were feeling of fear if someone can try to get me to understand why they came back after 5 years  dr dont know they know everything till i ask them a question then they dont know

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Hi Kate, Good to hear you enjoyed your wada test. I was hoping you could assist me. Please inform me as to where you had your wada test as i need to have one undertaken.Thanks

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Hey everyoneHad the right temporal lobectomy September 16th...... now almost 11 weeks no problems ... Could not go 4 weeks in the past with out something happening..... Thanks for everyones help.   As you all know I/we are not out of the woods yet but I belive in positive thoughtsJohn

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KateI was just cleaning out my e-mail (slow day at work) and found your e-mail about the wada test..... Did you go in??Johnjdurrua@jerseypaddler.com   

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john my name is Tabatha i had a right temporal lobectomy at The Medical Colloge of Georgia in May of 97. I have been seizure free for 7 years.  It was the best step I have ever took in my life.  If you would like to talk you can e-mail my at tab75gurl@yahoo.com, or if you have yahoo messenger you can i.m. my at tab75gurl

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Thanks Tab I will e-mail you John

RE: right temporal lobectomy

Hi, I am new to the community and had a right temporal lobectomy almost 4 months ago. They gave me an 80% chance, but am still having them. The Dr's said it could take up to 6 months before they could stop. I have always been weird though. I have had them since I was 5, I am now 23 and they just got an abnormal reading on an EEG in January and that was from internal electrodes. How long did it take for you to stop having seizures?

RE: right temporal lobectomy

Its different for every person I guess. I didn't have any seizures at all after the surgery, 3 and a half years on and I still haven't.Sorry I'm not much help.Kate

RE: right temporal lobectomy

had right temporal lobectomy 2.5 years ago now. Milder form of seizure beginning to occur. But most important be aware of the personality disorders you may go through. No one tells you about the manic depression many of us will go through the rest of our lives . Simply be prepared for it. Youll be on top of the world for awhile and when it comes crashing down its rough. Worst is that your neurologist wont even mention this common change. be aware but dont let it stop you.

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I am so glad I am not the only one that has severe depression after the surgery. Has your doctor prescribed any anti-depressants? I know my MD has me on one and it does help me. So where did you have your surgery done?Rochelle

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Hi, how are you?  I've also had the surgery and it's really nice to know that I'm not the only one in the world that has problems with depression.  Man oh man, it can be rough.  It's an awful thing.  It's also tough, too, to not take it out on the people you love.  I just started getting seizures three years ago out of no where and I'm trying to do everything I can to get rid of them.  They're not a fun thing.  Now I'm trying to see what's all about the VNS surgery.  That's about all I've got left.  Well, hope all is going good for you.  Take care,          Cheryl

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You can't always listen to everything the Doctors say. I have had them for 25 years and am still suffering.

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Have you had surgery?

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John,I had a right temporal Lobectomy 5 years ago. I have had only 4 seizures since it. I am still on medications. I thank God I had it done. It was the best decission I ever made. Now the after math was a process all its own but it is really worth it. I did do alot of research at the library which made me more secure. I would recommend getting a book on the surgery or asking you doctor for a viedo. I do know my doctor shows all his patients a viedo. I had my surgery taped also. But do some reasearch on it .

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ThanksBTWDoes the idea of the 4 seizures bother you after all you went thru ??John

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Hi Kate,I had a temporal lobectomy in 2003 for my complex-partial epilepsy, and it's great to hear that you're doing so well.  As for myself, it has nearly completely taken away my seizures, however, it has left me with some emotional issues to deal with, such as wild mood swings, being highly emotional, and even some sexual dysfuction.  Considering you have your lobectomy longer ago than I, did you go through this too?Thanks, Sarah

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Hi Sarah,I have noticed no obvious side effects, I think I've got a better emotional state of mind now than I did have before hand. Whether thats also because I've come off of most of the medications I was on I don't know.    Hope this has been of some help, any more questions just ask, and I will answer the best that I can.Kate

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Hi Sarah,I have noticed no obvious side effects, I think I've got a better emotional state of mind now than I did have before hand. Whether thats also because I've come off of most of the medications I was on I don't know.    Hope this has been of some help, any more questions just ask, and I will answer the best that I can.Kate

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I'm scheduled for a right temporal lobectomy on Sept 19th at Johns Hopkins Hospital.  I have partial complex seizures under 95% control on 2000mg of Tegretol XR.  I can drive, work, etc.  My goal is that I just want to get off such a high dose of medication.  The MRI showed a scar on the right hippocampus.  Video monitoring unit showed seizures derived from the right temporal region.  My surgeon Dr. Fred Lenz said the right hippocampus and amegdala would be removed during surgery since they reportedly communicate with one another.  I am scared and unsure of what side effects after surgery and for how long.  I heard the left periferal vision could be a problem along with spatial memory.  Would you share how you felt after surgery? Headaches, jaw soreness(how long until you could eat), and how your head feels day to day where they removed and replaced the skull.  I'm still debating whether I can go through with it given I rarely have seizures.  Thank you in advance for any information you can provide.  Barbara

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Barb, I just located this website & after reading your note from Sept. I was wondering if you had your surgery & how are you doing? I have been undergoing tests for the pasts few days, to see if I am a candidate for a temporal lobectomy. I had some tests done at Johns Hopkins a few yrs ago but we relocated to FL, so I did not have surgery at that time. Let me know how you are doing & any recommnedations you may have. God Bless, Jennifer

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Are you currently medicated?

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PLEASE 4-give me 'John' if I've already sent 'info'..but due to another 'accident' ,my 'memory' has worsened. Anyway,,My 'Neurologist' is, "Dr, Arts" (of Barrie,Ontario) & family "Dr,Trevor Berns",also of Barrie,Ontario. Now, a 'specialist' of "London, Ontario,Hospital" is preparing me for 'Surgery' (planning to 'implant' piece that get's a 'better' look at what's going on). Dr. Diosy, of 'London-Hospital',,does believe it is the 1-side causing all these 'seizures',,but wants to be sure. I'm just "VERY" scared, & Because I've already been 'Mal-Practiced' by 1 physician,,makes it harder trusting other's. I really hope you understand what I've said, & ANY support from you,,would TRULY be appreciated,,,THANX 4 your time,,Tracey,,,,

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Best of luck Tracy.... I just went in for a WADA test and will meet with thedoctors and his staff Thurs then the surgeon at the beginning of nextmonth....My Dr. is Devinsky and he is from NYU in NY,NY,Same thing here all activity is in the right temporal lobe but some old testsay the left so in for some more testAll you can do is take it one day at a timeJohn

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Hi John:Sorry it's been so long since I contacted you, I've been having afew difficulties since the 'Surgery'(nothing too serious). Anyway, as I've told many other's before, I have a 'Very-Bad-Memory' so if I repeat myself,Please forgive me OK? The 'Surgery' itself went good, just that they've informed me that if your 'Epilepsy' effects the 'Left-Side' of your 'Brain',they won't do the final 'Surgery' due it functions your 'Memory & Body-Functions'(I wouldn't remember anyone, or be able to move much if at all /more or less a 'Veggie'.)But the way I look at it,,is they 'Tried',& to me that's all that matter's,. Plus the fact there's alot of people out there far worse off than I am (we are). Well, take-care & I hope you'll 4-give me for taking so long getting back to you,. Tracey

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Hey Tracy<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />You are forgiven ;-)Things went well for me.The surgery was September 16thWe are now January 30, 2005 and no problems.... WOW  What a worldStill not out of the woods yet but as you said they went in and did what they can doTake care, John

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Oh, Trace . . . hmm. (considering for a time."I wanted to think about what "we" discuss here. I too, have "right-temporal lobe epilepsy" and the resulting "complex-partial seizure" activity. Was yours' caused by any kind of head-trauma? If so, I would be very interested in dialogue between us. Just to "see" your perspective on this diagnosis/life. Just curious As for having the operation. I would have to know a LOT more about the malpractive alluded to in your story. I think, you should write the details, and post it here.

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Hi Tracy,I myself had left temporal lobe surgery over 10 yrs ago. My surgery was 100% successful. I'd be more than happy to answer any and all questions you may have. Believe me, I've heard them all. I have now counseled over 1,500 people online who have epilepsy and are considering brain surgery or have undergone it themselves.Lisa-Marie

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Hi, I am having a right temporal lobectomy soon.  I'm curious how long I will have to be off of work.  I know it mostly depends on the person.  I'm 46 so it will probably take longer than if I was younger. :(  I have a desk job.

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JanaHiI was in the hospital for 5days and then my wife droped me off at work on our way home.....  I worked 1/2 first day and longer each day after that.... Best of luck John 

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Had left and right temporal lobectomy by Dr. harold J. Hoffman of the Toronto Hospital for Sick Children (Dec. ,9,1969) at 14 years of age. Removal of healthy good brain tissue resulted in dramatic increase and variation in seizure disorder, status epilepticus in the ICU, on-going episodes of cerebral hemmorrahaging in operative field. Increase in seizures led to further head trauma, and further unauthorized right temporal lobectomy on Jan 27,1972, at 16 years age.Second operation consisted of local cranium inicision, drilling of holes, than cursing profanities when the bone cutter was cutting between the holes,since listening to the skull crack open was literally torture.   Right temporal lobectomy was carried out, leaving me with further increase and variation in seizures, and on-going episodes of cerebral hemmorrahaging.   The Ontario College of Physicians and Surgeons Complaint Inspector, and the Toronto Hospital for Sick Children patient advocate, have informed me that I am a victim of criminal assault by Dr. Hasriold J. Hoffman.  Further investigation reveals pathology report outlining non-pathological brain tissue removal, discharge report outlining" surgery to alter behavior"Ontario Mental Health Act points out that psychosurgery means surgery to alter behavior, and NOT recognized for treating epilepsy, since this condition is demonstratable. My mother and other parents of epileptic children were ONLY informed of "scar tissue removal"Only to learn after the operation, that a non-therapeutic psychosurgical lobectomy was carried out without consent.`This notion that chopping out healthy good brain tissue  is condusive for epilepsy is totally ludicrous.   When healthy good brain tissue is removed from a human subject , this causes further scar tissue, which results in greater epileptic convulsive disorder. Which is why I seiuzured right after both unauthorized lobectomies for 1969 and 1972.Question arises, where is the informed consent for this psychosurgical lobectomy, and how is it acceptable to be prostituting epileptic subjects for brain surgical experimentation without consent nor parental knowledge?2300-4600 people die each and every year in Canada, due to status epilepticus,the number one adverse effect of lobectomy.    I fail to see any evidence that lobectomy is helpful for epilepsy.  As a victim of lobectomy, it is a shame so many other epileptics are being sucked in big time,  for non-therapeutic brain surgical experimentation.Would like to hear from Harold Hoffman patients 1967-1998 Warning lobectomy is a psychosurgical and NOT neurological procedure. Not helpful for seizure disorder.    Avoid getting sucked in, by medical misrepresentation.     Strongly suggest to exersize all remedies, including marijuana.Joint in front of me,Is better than a unauthorized lobotomy.Terry Parker Jr.www.geocities.com/terryparkerjr/www.cyberclass.net/turmel/timeline.htm 

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I am considering having a right temporal lobectomy and would like to know the personal side of recovery. I'm quite aware of the medical issues, but how can it affect you emotionally, even just the small issues like having some hair shaved off etc.
Any info from your point of view would be helpful. Thanks, Amanda

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HiMy name is TomIIWatkins. I had my Brain Surgey on my left side where it left 33% of brain damage. I have headaches from it. But there is nothing they can do about it. Because there could have pressure for the surgey but there no results from that. My lifestyle has a lot to do with it. I work at Publix, I play sports, help at Church. I do have a GrandMol Seizure disorder from it also. But my seizures are not to serious to worry about it.P.S. Good Luck on your Brain Surgey.Also Email at TomII20@yahoo.com if you want to talk you.

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Tracey,
I had the same operation when I was 21 years old. At the time I was having 60 -100 grand mals EVERY day and was not allowed out of the hospital bed, not even to go to the bathroom. The surgery was the best thing for me. I was unable to live any kind of life the way I was so the decision was easy for me - I decided that living in a hospital bed with the rails up at all times was not really living and the operation HAD TO be better. At this time, I was really a guinea pig - they knew nothing about what this would really do to me except help alleviate seizures I thank God I had a very good doctor with a very steady hand to do this. I would definitely make sure your Doc has done this before. You have that option since I know for a fact that it's been around for 36 years. Another wrench thrown into account on my decision was the fact that I never had an aura of any kind - I was just out cold on the street, sidewalk, in traffic...you get the picture. I'll be praying for you.
J Ryan

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Re: RE: right temporal lobectomy

Hi Tracey. I had scar tissue on my left side also. It caused petite mal seisures also. I had a right temporal lobectomy almost 6 yrs ago. I was 34 when it was done. I have been seisure free since and off meds for a year. If you need to talk, my email is popphot@msn.com. Good luck.

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I believe that left temporal lobectomies are more common, but we do have one story on the epilepsy.com website about a right temporal lobectomy. It's athttp://www.epilepsy.com/stories/ps_1064879773.html The fellow in this story did have some surgical complications but the operation stopped his seizures, so you may be interested in reading it. Not all brains are "wired" the same way, however, so anyone considering epilepsy surgery will be tested to find out what areas can be operated on without causing serious loss of function. Some people (especially those who are lefthanded) have functions like speech centered in different places than most people, so the results of a right temporal lobectomy (vs. a left-sided one) will not necessarily be the same for everyone.

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Hi  my name is Michael and I had right temporal lobectomy 5years ago at the age of 46 to remove a scar tissue. I have been seizure free ever since. As far as the operation goes I found nothing to be scared about.In matter of fact I couldn't wait to have it ,as having epilepsy for 46 years was no joy. I am still taking 2 tegretol 400 CR and 3 Zyprexa {5 mg} The zyprexa is for depression and physcosis which  I started with in 1991 and resulted from the scar tissue pulling on the brain cells .

RE: right temporal lobectomy

Hi John, how are you? Yes I've had the right lobectomy done. Just last Sept, actually. They had to do this thing called 'invasive monitoring' for a week to see where the seizures are coming from, hoping that the siezures are coming from only one side of your brain. Well, unfortanetly mine were coming from both but I had 6 on the right and 2 on the left. So since more were on the right, they were hoping that the left ones were setting off the right ones. So, we did the right side lobectomy in Sept. By the way I have petite mal type seizures. Well, I'm still having siezures, but after three months my seizures have gone from around, oh you know, 12-20 a month, and in Jan. I only had four. Last month, only four also, and, knock on wood, only one so far this month. The recovery is easy as long as you take it easy. You'll get headaches every once in awhile that you know are coming from the surgery, because it's at the very top of your head. When you apply pressure on the top of your head it feels better. But if you have any more questions or just need to talk, just write back, I'l be more than happy to chat. Good luck with everything and hope it works out for you.

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Thanks for the feed back.... Right now I am waiting for one more test and then we should be ready to go. As far as they know all my seizures come from my right temporal lobe hipo campus but I think there are some questions.Thanks for the feed backJohn

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Hi my name is Dawn and my hippocampus and amygadala were involved and were removed along with my right temporal lobe. That was 22 years ago and I've been seizure free since and never regretted having it done. You may experience some short term memory loss but you learn to cope with it. Best wishes!! Dawn

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