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Has anyone in this group had or knows someone who has had a right temporal lobectomy?John
I had my RTL surgery in 2004. I had Grandmals and it worked good! I did good for a year and a half. After a year I was driving, loved it! I started having little signs here and there that something still wasn't right. (I was on meds still.) I unfortunately did not stay seizure free. I had to quit driving again. I had caused several accidents and don't remember anything about them, only what I was told. That was awful, I was so worried I had hurt someone. To many, "What ifs". When they said no more driving, I said "No problem!"
I am not having Gran mals any more, I love that, but... I have complex partial now. I'm on three meds and have a VNS. (Lamictal, Vimpat and Keppra.) Everyone's different though! You might be one of those that it works for! I wasn't unfortunately. : (
I have had a temporal lobectomy which I believe was on the right, but am not sure since I have had other surgical procedures on both sides, such as the insertion of electrodes, Thus, I cannot be sure of the side of the lobectomy.
My seizures seemed controlled until, I was starting my freshman year college (1980-'81) my seizures resumed, without any change in treatment. They have continued ever since, currently several times per week, from as little as moments of unconsciousnes followed by disorientation to much more serious, and frequent "drop attacks."
I have had life-long epilepsy, ever since my premature birth, 52 years ago. After frequent admissions to hospitals as a young child, it was determined that my seizures were caused by hypoglycemia. As a result, I was told that hypoglycemia was my ailment, and that a steady diet, and taking an anonymous "pill" (Dilantin) the purpose of which I never learned, was the effective treatment which seemed to successfully prevent my seizures from adolescence through high school.
Having always been a very good student, I was able to finish a double major (in International relations and in Economics) as an undergraduate (1980 - '84). In '84,I went on to start working for a graduate degree in Political Science, in hope of making a career as a diplomat. After a multitude of ineffective medications, I was sent for the temporal lobectomy in April 1985. When I was seizure free for nearly 12 months, the seizures resumed once again, apparently as result of a tiny, but irreperable mistake during the surgery.
Nevertheless, I was able to return to school. When getting close to completing enough credits the MA, I had to stop taking classes. Nevertheless, I was able to earn the credits by writing a thesis, "The Effects of Defense Spending on the Present United States Economy," (during the Reagan Administration) of 99 pages. This enabled me to receive my degree in September 1987.
Despite my academic success, my continued seizure prevent me from working, driving or travelling any other way on my own, and leaving my parent's care. This care includes a wide variety of restrictions in response to the possibility of my having unexpected seizures. These range from not going anywhere outside their property alone, as well as not going into stores or our basement. Gandalf
I had one almost 10 months ago. Here is a short write up of my experiences during surgery and recovering. Read from bottom to top!
I started work back up 6 weeks after surgery. I was able to do most of my work (legal and mediation) from home and here I am, 10 months out, and the only problem that I've been having lately is that I still have a little puffiness around my right temple and sometimes overextending how far I open my jaw can hurt. But NO SEIZURES.
(I haven't updated in a while because I'm back at full time at work and find that I do have a harder time with multitasking)
Hi, I'm 32 and have simple partial seizures. I had a right temporal lobectomy 6 weeks ago and had my first post op aura last night, no seizure to follow though. I was still devastated afterward, thinking that surgery was unsuccessful when my recovery was going so well. I have heard it is normal to have an aura or seizure at this stage, due to dried blood still absorbing into the body and the brain continuing to heal. Lately, I've been feeling really "low" and emotional - not sure if that has anything to do with it. Has anyone experienced this? I'm new to blogging...
Thanks for your help! Lynn
I had a right temporal lobectomy done on 1/8/13 and my last seizure was 1/7/13 you can find my story on this site (link below). I also have an advocate page on facebook http://my.epilepsy.com/node/1000441/full
my facebook page is called turning the world purple
Has anyone found people who have had surgery locally so they can talk person to person with them? If so how did you find them? I am 61 years old and and have seizures about one year apart. After trying several drugs my neuro has suggested I go to a local eptoligist for evaluation. He stated trying yet another type of drug has average success rate of 3%. I am terrified of brain surgery. Most of the comments here are positive. He stated the success rate for my type of seizures is about 80%. I am an active person, skiing, biking, canoeing etc. If after surgery there were side effects like loss of leg or arm use it would devistating to me. OTOH I currently cannot drive due a seizure I had on 10/12/2012. With the surgery there is the possibility I could drive again. Any comments would appreicated.
Hi has anyone had the surgery at age 55.
I had a right temoral lobectomy on 1/25/2011. I didn't expect that they were going to remove the entire temporal lobe so I was rather surprised to find they had done so. Still, I can't complain as I have been seizure free since then. I had lived with epilepsy for 35 years and though my seizures were mostly controlled I still had that fear of things falling apart. I had a lot of pain following the surgery and had double vision for a couple of months afterwards, but otherwise neither I nor anyone I know can see a difference in me. Now I am a few months shy of 2 years seizure free and can hardly believe it! I still take medication but am fine with that for now.
I had a right temporal lobectomy march 2008. I underwent a 5cm lateral temporal resection and an extensive amygdalohippocampectomy. Luckily I have been seizure free since then. The only thing is I get really bad migranes every day. But i can say one thing the surgery has really helped me no more wondering if another seizure is coming. At one point i was having 4 to 10 of them a day. on 2 to 4 different meds and they was still uncontrollable then i started having them at night time when i was sleeping. so i finally agreed to have the surgery. And yes at first the recovery i was thinking what did i do i was in so much pain but in the long run it was so worth it. Barb
Just to follow up on what's been going on with my bad experience with surgery, one hand wasn't watching what the other was doing in my surgical intervention. My neurosurgeon took me off of meds in a rapid 2 week reduction when my Epileptologist had no intention of reducing them and even adding some if needed. Now, I'm back on Keppra, off of Depakote and currently seizure-free! After comparing notes, between my Epileptologist and Neurologist, the best order they've given me, I think, is to stop Dilantin completely and to throw any I have left away, I'll gladly never take Dilantin again!
I had RTL surgery on May 5, 2011 and my seizures have returned again already in a bad way, I am very disappointed. According to my Dr, I'm supposed to be seizure-free and med-free. My seizures have returned in a fierce way and I do not have any meds or a plan to get any.
Question...did they take you off of your medications immediately after the surgery? I had a left-temporal lobectomy 16 November 1999. They kept me on my meds of course the dose was too high...3600mg of Neurontin and 200mg of Dilantin. It is being reduced. When your doctor found a targeting area for the surgery did he say that was the only area?
I am a 26 year old woman and had Right Temporal Lobe surgery in July 2010 at NYU Langone Medical Center. I had been diagnosed with epilepsy 2 years prior and was having 2-3 complex partial seizures a week after trying the whole host of medications. I am happy to say I have been seizure free since and owe so much to the wonderful team at NYU Langone Medical Center (also to my family and friends, of course). My advice to anyone considering surgery would be to listen to your neurologist's advice with an open mind. This was, without question, the best thing that's ever happened to me. The recovery process was easy in some ways and more challenging in others. I was very tired for a couple weeks after leaving the hospital but had no pain at all and was back at work 6 weeks post surgery. In the year and a half following the surgery, the biggest challenge as been the emotional aspect of processing such a traumatic event. About a year after surgery I began to struggle with some depression/anxiety and not feeling quite like myself. I wish someone had told me to work with a therapist throughout since it took me a year to see someone but made such a difference when I finally did. It's tough be be "thrown off track" by something as major as brain surgery and in my case the epilepsy which came out of nowhere when I was 23. But it's all been so so worth it. I have a newfound appreciation for life and newfound empathy for the hardships that everyone deals with at one time or another. And most importantly, surgery allowed me to go back to living a normal life without seizures.
Hi just read your post and hope you are still reading and posting
My dr has said that the only way now is lobal surgery if I am approved as in the MRI I have some damage on both side. I have some questions that I think only someone that has gone thru the surgery can answer. I also have complex-partial seizures a few times a week and have tried many meds and combinations to no relief. Also the side effects for me are overwhelming. I am a writer and with these meds I cannot put my words in order etc. I know you understand.
So my questions begin there. After your surgery could they reduce your meds so your side effects where not an issue?
Did you have any memory loss of any kind, did it come back. Did you return to high functioning quality of life. I guess my question here any is will I be able to return to writing. Did your speech remail normal or in my case return to normal. Are you driving. WHat if any besides the migraines are side effects from your surgery. I have told the dr no to surgery however after this week I think it is an option. That you for your time.
I had a RTL and amyg/hippocampal-ectomu (that's a mouthful, so I just stopped trying to spell that!) 10 months ago. It has been so successful. I'm almost 40 and have had simple and complex partials and tonic-clonics - I was a mess! I am a writer, as well - as a journalist for some time and most recently as a lawyer. Seizures and medications were gradually impacting my work and health. After the RTL I am now thinking more clearly and my family and friends have noted that my speech is much more fluid. I think of it like this: before surgery when I was engaged in conversation, I had to actively work to stay engaged. I had to listen to the conversation while physically putting together responses. It was exhausting! And during law school, it was maddening to keep up with coherent notes while listening to the professors.
What I'm saying is this. Everyone is different. We are different bodies of bones, blood, sinew, and electricity. For me, surgery was an inevitability because my life on medications and seizure recoveries was no life at all. You have to make the decision after looking at the odds, talking to your doctor, and consulting with you and your family. For me, this was the gift of my life back. I am a different person now. Softer, nicer, sometimes a bit silly. But I am living and the life has more quality to it than the last 15 years.
I continue in my profession and I find that my writing is a little different, but not in a negative way. I'm relearning myself. I am different, but I love this new me.
At this time, I'm still on medication - just Vimpat!- and I don't care. The side effects are essentially gone. I do get migraines. Who cares? It hurts, I sleep, I live. :)
I hope the best for you. If you have any specific questions, I would be happy to answer!
My wife will be undergoing the right temporal lobectomy next week at the Cleveland Clinic. Any side effects she should be worried about?
I had a left-temporal lobectomy 16 November 1999 and have been seizure-free since then. The one side effect to the surgery was that it left me with a small blind-spot in my right eye. It's not noticable, but it's there. The doctor may keep on medications for a little while. I was taking 3600mg of Neurontin per day as well as 200mg of Dilantin. It's being reduced now & the EEGs and CT scans show awesome recovery to my brain. Truthfully, the doctors do tell me that I can be off meds, but have me on them for my own "safety". After having seizures from age 11-18, it was somewhat scarey to just stop taking the meds and so that is why I am slowly, but surely reducing the dosage.
I had RTL surgery on May 5, 2011, reading some of the "handedness" replies in this thread intrigued me. I write left-handed, eat left-handed, throw a baseball right handed, bat right handed, and catch right handed. It's always seemed to be a hassle to grow up in a family of right-handers and I was the only lefty. In school, I always wanted a left-handed desk because it was easier for me to write. Growing up, playing sports, my handedness never came into question until the situation came up. If I try to hit a tennis ball with my right hand, I "swing like a girl.", my left hand "serve" isn't much better. It's always been a "problem" for me to see which side of my "handedness" was going to fit into the situation of something I was doing until I got there and it became a "hands on" situation. For as much as I can and can't do with either hand, I've never considered myself either left handed or right, it depends on the situation, I just adapt. What this has to do with my RTL Epilepsy, I have no idea either!
hey, so I'm 18 and I have had 2 grand mal seizures and I had myoclonic jerks for a while. I am on two 500 depakote pills a day, these seizures were not natural the first one was triggered by fainting then a concussion after as well as an overdose on addrall. Since starting the medication I have stopped the seizures and the jerks, but I cannot join the military of which I wanted to do since I was 10 because the military cannot count on delivery of my medication. Do you think that getting this surgery will allow me to stop taking my medication so i can join the military? I already know its 5 years off the medication and seizure free to join. Please help I have been thinking about this for a while and Im haven't talked to anyone about this but I wanted to hear your opinions first. Please get back to me!
I just had a Right Temporal Lobectomy at The Spine Brain Institute here in Las Vegas, NV. As of right now, I'm still in the pain and recovery from surgery point to make an assessment of weather or not the surgery worked for me. After I recover and am able to get back to some kind of life, I'm sure I'll find out quickly if the surgery was effective for me or not. I'll follow up on this post...
Here I sit in recovery at Sunrise Medical Center after having Right Temporal Lobe Surgery!!! My head hurts but it's nothing I can't handle and they've given me a minimum of meds to control the pain! I'm hoping this is going to be a new outlook on life, as bad as my Epilpesy has been, I can't look much further down! The surgical staff and all the people in the hospital here have been very good to me and I recommend them highly! Not that I'm high right now, I just wish I was, I'm going to work on that MMJ program with my Neuro when I get out of here, if he's not on board with it, I think it's time to start looking for another Neuro! I was scared to death and probably still am but here I sit with staples in my head, it's done!!! I plan to post many follow-up's to this post and will start my own topic on this subject because this has been something I've wanted to do for a loooong time and had some of the best in the world digging into my head!!! I've already asked them to write me to detail their experience inside my head so I can see if I can come up with an iteresting post right from the horses mouth!!!
I had a Right Temporal Lobectomy in april 2005 for Messial Temporal Sclarosis-Partial complex Seizure Epilepsy. I had my surgery at Massachusetts General Hospital and it was the best decision i ever made. I had been on Tegretol, Phenobarbitol, Phelbatol, Dilantin, and Lamictal, all in different combinations over 22 years. After the surgery I was slowly removed from medications and totally off meds 8 months after the surgery. I have never had a seizure, since the day before the surgery in 2005. I do sometimes get an auro, but no seizure. My question is what kind of side effects are people experiencing 5 years after? I am concerned I may need to go on Anti-depressents, anyone out there want to discuss their side effects? Just email me at email@example.com.
My husband has had partial comlplex seziures since he was two and in 2005 had a left temporal lobectomy. He was seziure and medication free until March of this year. He had a seziure while coming home from work and he is now on medication again. (Keppra) The specialist said that he has a greater chance of controlling the seziures with medication after surgery. He had surgery at The Methodist Hospital in Houston, TX and we were very pleased with the doctors, nurses, and all hospital staff.
He was seizure free for 5 years, then all of a sudden he had seizures again? That is really scarry as I had a right temporal lobectomy in 2005 and have been seizure free!
Well I had a right temporal lobectomy in 1995 and went seizure free for 8 yrs. They tried taking me off my meds and as soon as they did I had a seizure. So just because you have the surgery doesnt mean you can go w/o meds. I was told before my surgery I would more than likely take it the rest of my life. But I went from 3500mg before surgery to 450mg of pills a day now. I have only had 1 seizure since my surgery in 1995 and that was when they tried taking me off my meds. Yes that surgery changed my life because I was having mulitple seizures a week and now none. Holly, he will just have to continue taking his medication. But will probably not have to take as much as he was taking in the past.
My son has complex partial seizures (sometimes secondarily generalized) 2 to 4 times a month and myoclonic seizures about 2 times a week. He is on lamotrigine 200mg x2/day, trileptal 900mg x2/day and Vimpat 50mg x 3/day. He will have the WADA test in 2 days. He has brain lesions in his right temporal lobe where seizures come from. He is diagnosed with ADHD, bipolar disorder 2 and substance abuse disorder. He had genralized seizure as a little boy from age 2 to 8 (6 month after a hard fall on head, first seizure was febrile), was treated on phenobarbital then tegretol. He was seizure free and medication free at age 10 until he was 18, age at which he almost died of a drug overdose, suffered brain damage in his right temporal lobe and started to have seizures again. Sadly he continued to use hallucinogenics after his drug overdose and made his epilepsy worse. At that point he was diagnosed with bipolar 2 as he was manic and on a destructive bent with a smile on his face. Today he is 21 and 10 month sober (at last) with a bad memory...etc... attention deficit, mood lability but with high intelligence. He is hopeful that surgery will stop the seizures. The lesions are on his right amygdala and right mesio hypocampus as far as I know. He did his preop evaluation at UCLA. His surgeon if he can be operated on safely (right temporal lobectomy) will be Dr. Iztak Fried. Did anyone have surgery at UCLA? Lots of people are talking about the Mayo clinic which uses a pre-op test called STATISCOM. Is UCLA top notch for epilepsy surgery? I am a worried mother.......... Please, answer.
As I recall, the WADA was the most difficult part of the whole process. My epilepsy was eradicated by a RTL in 1987. They removed a bruise the size of a large kosher dill pickle left there by a line drive baseball when I was 13. Can't speak to the quality of care at UCLA, but the Cleveland Clinic is my facility of choice for any procedure that tampers with any of the really delicate stuff in the body
Knowledge is power. Power corrupts. Study hard, become a bad person.
I had a right temporal lobectomy at Mayo's in 1984, after running the course with so many doctors and diagnoses that I still can't hardly believe it. This was real experimental stuff at that time, but I came home in a week, and have never taken another pill, except vitamins, since.
In retrospect, I should have told my story long ago, but if anyone has any questions my experiences may answer, let me know. Above all I would recommend Mayo-Rochester for any condition, but especially neuro. It's like no other medical facility you will ever go to.
Hello out there
My son, 7, had a temporal lobectomy 2 weeks ago...the day after surgery he had 4 seizures in 2 hrs. They looked the same as before (complex partial). The doctors were very concerned that they didnt "take enough out". since then, he has not had any. But, he has had auras and seems to be eating non-stop. anyone have any thoughts?
I haven't been on here in a while but I ran across your post and was wondering how your boy is doing. I had a right temporal lobectomy in November of 2008. Until a few months ago, I had auras all the time. I was on 5,200 mils of 3 meds (keppra, lamictal and tileptol) before my surgery. After my surgery they lowered it to 4,100. And a few months ago they started a rapid reduction. I'm down to 500mils of lamictal per day. As they lowered my meds, the auras slowed and are not happening anymore....so far. It took a year to get where I'm at today, but I've never felt better.
I hope all is well with him. Take care and God bless,
I am a 25-year-old female who was diagnosed with adult-onset generalized epilepsy at the age of 21. I went through multiple trials of medication of all types, and as my condition deteriorated and my seizures intensified, I knew I had to try something different. I switched doctors and hospitals and found that I was actually having seizures that all originated from my right temporal lobe. I had been having partial seizures and not even realized so. They suggested the idea of a Right Temporal Lobectomy. I had this surgery in September of 2007, and consider it a huge success. I went from multiple seizures a week down to 3 seizures in 20months. I was always aware that surgery was not meant to be a "cure", just another way to reduce my seizures. It was VERY well worth it!! My quality of life has improved in more ways that I could have imagined, and although my 3 post-op seizures were disappointing, I am so thankful that I had the opportunity to have this surgery.
I have had NO lasting, long-term effects from the surgery. For awhile, besides the expected pain of such an invasive procedure, I had a few short-term memory lapses, but these were very mild and went away over time. I think it's important to have support from those around you after a procedure like this.. It is not a good time to be alone. I needed a lot of encouragement and general help, mostly because I was very tired and lethargic for awhile. Otherwise, I came out of the surgery in pretty good shape! I had no physical side effects whatsoever, and aside from the well-hidden scar behind my hairline, you would never know by looking at me that I had "brain surgery". No eyesight problems, no emotional or personality changes, no speech problems or lasting memory loss. This surgery gave me back my life, and I would encourage anyone whose doctors recommend it to listen with open ears. It could give you a second chance on life :)
I do have to put in a little shout-out to my INCREDIBLE team of doctors and surgeons, and everyone who cared for me at the Mayo Clinic in Arizona. Thank you for the gift you've given me!!*~Stephanie~*
My wife just had a right temporal lobectomy for her focal seizures (3 weeks). Although the surgury was successful, the doctor was suprized how much of her word formation was on the right side. Her short term memory is very low and she is especially low in her apparent mental age, for the lack of a better phrase. I would say that she is at best at an 8 year old level mentally now(she is 58).
I am very disappointed with the surgery so far. Although I know there were possible problems, I thought anything like this would be truely temporary.
She will be having occupational, physical and speech therapy.
How long does this last, or is it ever truely over? I guess I am asking if I will ever really get my wife back?
don't give up hope but i do think it sounds a lot like you may have a major law suit on your hands.i am going to assume she did not have the wada test prior to surgery.if she had i don't understand how she could have had this type of outcome.if she did not have the wada test wich is a requirement you need to run to your lawers office as fast as you can because if she does not get better your insurance will eventually be exhausted and she will need social security for her care.if she did have the wada test i would still consult with a lawer and definately seed social security benefits eventually because although even minor cosmetic surgeries can lead to death or unforseen side effects the side effects your wife is having are not par for the course.if they were her neuro surgeon and neurology team would have made that very clear long before the surgery so that she could make an informed choice based on the pros and cons.i have faith in doctors and medicine but medicine is a business just like selling anything else doctors are selling their services for their hospital and they all have to generate income for the hospital via clinical and surgical means or their programs get cut.if your wife had say had a stroke instead of brain surgery i know their is great chances for stroke victims to make almonst complete recovery with time and vigorouse therapy so i don't think you should loose hope.hope is the essence of life right?do your home work.
I had a stroke 24 years ago. I have permanent damage to my left side, but fortunately my right side is normal. I describe myself as "brain-damaged, but intelligent" ( Jan./Feb. '07 Stroke Connection magazine - check it out, there's a great article on me, pictures of my wife and myself and some of my poems are published. God must have a sense of humor - Google search "Gary Hyink" - I'm the only one! for more of the story visit my web site - http://garyhyink.com My wife and I live in Manhattan. Fortunately she has a great job at Mount Sinai hospital. THANKS FOR MY WIFE'S JOB - SHE LOVES IT! AND THANKS FOR THE INSURANCE MOUNT SINAI!!! YOU'VE BEEN KEEPING US ALIVE FOR 13 YEARS! YOUR INSURANCE CERTAINLY HELPED ME WITH THIS $122,339 NYU Langone Medical Center's 9/24/09 Bill. I could handle the $344.13 co-pay. I'll bet this upcoming 1/28/10 Temporal Lobectomy at NYU is going to cost over 500 grand. I'm sure my overall total hospital bills have exceeded a million dollars in the last 13 years. Thanks Paul Klotman for being a great boss!!! I'm epileptic and in the last 13 years I've been rescued multiple times all over Manhattan, INCLUDING MULTIPLE RESCUES TO MOUNT SINAI, ELMHURST, LENOX HILL, HARLEM HOSPITAL, ST. LUKE'S, NY METHODIST HOSPITAL, NYU hospital, NORTH METHODIST, NORTH GENERAL, ROCKAWAY COLUMBIA, BELLlVUE, ST. VINCENT'S etc. and a few times in Brooklyn and in Queens. I've been rescued to 12 different hospitals and have been in several of them multiple times. I am thankful for all of the people who have helped me over the years. There have been nurses, doctors, assistants, policeman, firemen, pastors, friends and just people in general. I am thankful for everyone and that would include a person who helps me when I am unsure and I need directions - and I have lived here for 13 years, but sometimes I'm having "a bad brain day", so I "need to make sure where I'm going", if I'm not sure. I think, "Thank you" should be our first response when people try to help us. I think "Help" should be our response when we need help. I do think we should help ourselves when we are able. However, there are times when we are unable to help ourselves, due to the circumstances. There are plenty of people who are willing to help us help ourselves and there are plenty of people to help us when we are unable to help ourselves or unsure of how to help ourselves. I don't think a lawsuit should be the first bit of advice given. In a negative situation try to seek out and get some positive advice and in a negative situation; I think that you should try to give some positive advice. DO YOUR HOMEWORK!
and have a great day!
Remember, epilepsy surgery is not a guaranteed thing. It's experimental. My doctor has never cut open my skull, hooked my brain up to a monitor, tried to find the "focal point" of my seizures and then tried to cut it out when he "Thinks he found it". I think he deserves a "Thank you for trying", even if the operation is not a success, because I think my doctor's hearts are in their work and they are doing their best. If there is a mistake or a negative outcome, well, that's the chance I'm taking and that's just part of life. I would, of course, expect them to repair their mistake. Basically, Step one will be to pray that all goes well. Step two will be to get there on time with my sense of humor, do what they say and to tell myself to, "Be a good patient!" step 3 will be to wake up and see what happened. Step 4 will be to RECOVER WITH A SENSE OF HUMOR!!! ("who am I...Who are you?) I do think it's important to try to keep a sense of humor throughout life. So, if you're going to sue, smile first! Just kidding, that was an example. I just hope the piece of my skull doesn't crack when he puts it in the freezer and I hope he puts it back together smoothly, before he sets it in place and screws me with those titanium screws. and I hope I have a nurse with a sense of humor. I can think of a million jokes, "would you tighten my catheter, please, it's slipping?"
I haven't had a seizure, since the RTL that I had 1/28/2010 at NYU hospital in Manhattan. How about that! I was having 2-3 grand mals a week and I was having other problems with my brain bothering me, but not developing into a seizure. My head is not bothering me like it was before the operation and the pain from the operation is no more.
http://garyhyink.com Have a great day and be careful and "Hang in there" - to quote myself: http://www.heartsandminds.org/articles/homegary.htm
Sorry to hear about your wife's outcome of surgery. I had right temporal lobe surgery done in 2007, and thus far have not had any more seizures, but the only complication that i had afterwards was that i lost some perviferal vision in the upper left part of my eye. Which was something that i knew could happen. Forunetly, my memory was not hindered at all. I have heard alot that that problem usually happens on the left side of the brain. Did your wife have the WADA test done before surgery? It is a test where they "put to sleep" each side of the brain, one at a time, to see where memory and speech come from. But thier are others that do have memory problems regardless of which side the operation was done. With the therapy that your wife will recieve, i know that things will get better for her. It takes time, so stay strong. I wish the best for you and your wife.
Take care, and God Bless
I had a right temporal lobectomy in 1990. And yes, it was successful in controlling, even stopping the some 20 seizures a day I was having. However, I have had extreme emotional issues since then and great disorganizational problems. I'd still recommend it to anybody whose seizures are out of control, but make sure you are told what the after-effects of the surgery are, as I was not told. In fact, my surgery is part of the study/research of the hospital I had the surgery at. I am 39 now, I was 21 then. I was awake for the surgery as well.
Jesus Is My Rock, Music Is My Sanity, Steve Wilkos is my Hero.
Sheri L. Adams
Dude- I just had one on Thurday, March 1st 2007- If I had ever thought I would be this NORMAL afterwards you would've had to punch me in the face beforehands- when I woke up I alsmost didn't realize that it had already been done. I'm at home already which is nice- some head pain, more ithcy rash from antibiotics or something they gave me at the hosital. which when you can't move too stealthly is kind of a pain in the ass.... But really I feel like how the hell did they just cut my brains OUT and i'm the same- I wonder how many nonepilepsy people are out there that they could cut their brains. out....................hehhehehhe
time for dinner- my Mom is here cookin for me- smells better than my food!
Good luck to all!
my mom had this surgery done in 1991 for uncontrolled seizures..she started having them when she was 17 yrs. old. During testing--video monitored EEG they recorded her having 83 seizures in 20 minutes. She goes into a seizure--comes out--then right back into another--this can go on for hours--it completely wipes her out. About the surgery--please ask all of the possible questions--even if you think it sound silly--ask! Be sure and ask about your risks of spinal meningitis--my mom got meningitis and they had to go back in and remove the bone flap and put in an acrylic plate--she suffer'd major behavioral problems and HUGE personality change--she now has a number of diagnosis--borderline personality disorder-bi-polar..ect..it's very sad not just for me..her only child..but for her..the pain and torment that she must endure on a daily basis. I will write more later.
kim, i hope your mothers lobectomy helped reduce her seizures.some very important thing i am going to share with you.i had a lobectomy very successfully myself.it probably saved me from accidental death or eventual renal failure.like your mother i had seriouse refractory complex partial seizures due to a brain trauma for twenty years.at best during those years my seizures were reduced from a constant state of status epilepticus like your mom down to about 6 per month.the problem people don't know about though is that epileptic seiazures destoy our brains over time.scientist know that after two minutes in status our neurons begin to destruct.neurons are cruscial for mood stabilization and emotions.we never know we have mood disorders prior to surgery because we are so loaded up on the drugs we are pretty much passive little people all the time for the most part.what happens though is prior and post operative the doctors wean us off our passifiers and we go totally nutso.i had many bouts of depression over my life prior to surgery and never sought therapy.it never occured to me because i was very naive and uneducated about my disease.i accelerated into a total manic nirvana in the months after my surgery then plummeted into suicidal depression before i got help.i also have been diagnosed with bipolar and SAD and god knows what else.mood disorders go hand in had with epilepsy.it took about two years for me and my shrink to get me stable and i have had to go back onto carbamazepine therapy but i now know that i never want to live without my carbamazepine and effexor.if your mom is on lamictal it could be making her nuts too.i was on lamictal for several years and it was horrible.i turned into a freaking basket case.the docs rave about it but it isn't all it's cracked up to be.it can be very overstimulating for many.i have read many bloggs of family members who attribute lamictal to their loved ones suicides.the problem is it has a very short life span so it makes us feel fine for several hours but just like cocaine or other street drugs we plummet when it starts to wear off before our next dose.it is horrible and i would go through crying episodes about three times a day and loose my ability to cope with anything.i waisted so much preciouse life this way in bed in agony.there are some other drugs that also do this.topomax made me overly emotional and anorexic as well.your mother has got to go to a real psychiatrist.neurologist are for treating seizures.primary care docs are not qualified iether.get her to a psychiatrist with a lot of years of practice.preferrable a neuropsychiatrist.your mother can be better. i know this is true because all mental illnesses are treatable now.especially bipolar.if your mom is having problems with her meds no wonder she was diagnosed with personality disorders.thats how we feel and act when our meds are not right.it is a constant battle having mood disorder but life is so much better when we are on the right meds and worth it.there will always be the need for titrating and adding an occational anti anxiety,stimulat or benzo for sleep.life is like a roller coaster ride even for health normal brained humans let alone those of us who have essentially stuck our fingers in a light socket 38 times in twenty minutes for half out lives.i know your mom can be better.she needs to get on a good old fashioned mood stabilizer such as lithium,carbamazepine or depakote and from there it just a matter of a pinch of this and a pinch of that and therapy therapy therapy.your should also read Dr.Kay Reddfield Jamisons books.start with her bio and go from there.it will totally reassure you and instill hope.if anyone can do it she is living proof.never ever quit trying to better our health.never accept no for an answer untill you have gotten many second opinions.if i had accepted no from my shitty old neurologist who told me i would probably never get better with my epilepsy i could be dead.he was a very poor facsimile for a specialist.i don't care if i have to drive three hours now to see a better doctor.if i am not getting results i approve of i will always keep up with self education via the internet and library and see more doctors.there is alway another doctor just down the road with a little bit better education and motivation.best wishes.you are your moms best hope and advocate.she is lucky your care so much.
just had the RTL done on January 6th and am home and doing well. Besides the pain from the cheek and jaw it really could be worse. Mostly I am just a blubbering emotional mess but all in all things are going well. I am anxious to be doing a bit more activity but I see my Doc tomorrow to hopefully get the staples out, maybe then he can give me a better idea of what I am realistically capable of. They said no lifting anything over 5 pounds and seeing as how I have two little girls aged 2 and 4 that is not happening.
what sort of pain are you having to deal with now and what sort of post-surgery issues are you struggling with? Hang in there!
my eeg showed that i have little seizures in the right side of my brain all the time and complex partial ones if i don't take my medication. my dr said that surgery is a possibility and the little ones inhibit me from learning and processing information. i feel that my hopes r too high because after i get it, if all goes well, i want to go back to school. i figure if the problem is gone then i should be ok again, i've had them since i was 10. but i hear all these stories about memory loss and wonder if it may make me worse in school. is it a huge problem and how long does it usually last?
I had the operation back on Sept 16th...... All is well.
Thanks for the response
If you had a RTL by Dr. Werner Doyle at NYU, please call me, 646-314-5502, because I have one coming up in 3 days on 1/28/10 and I'd like to talk to someone that had one.
I was just wondering if it was the same place as me but I had mine at NYU
All went well.... We are now 8 months post op and everything is great
Life is good