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  #21  
Old 06-15-2008, 08:49 PM
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Hi Nancy! I'm glad things are going well with you. Thomas Jefferson is a really great hospital as well. I learned so much during my week stay there. I feel confidant with my dr's, But i still have concerns. I'm just doing alot of research and hopefully it will all work out. Good luck with everything and keep in touch!
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  #22  
Old 06-15-2008, 10:21 PM
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Cool mandyRight Temporal lobecetomy


Mandy,
In 2000 I had a right temporal lobectomy in Dallas ,TX at Parkland hospital. It is a good option for some, but others it doesn't always work out. So please weigh the options before. And make sure you've tried everything that is out there. Because I have a rare condition where I don' t have a corpus callosum and a Dandy Walker which is cerebral palsy and cause me to now have complex partial seizures when I used to have petit mal seizures. Just take care of yourself and we will all be praying for you.
GOD BLESS
David hair
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  #23  
Old 06-18-2008, 10:37 AM
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Mandy,

I'm also from PA & had the Left Temporal Lobectomy at Allegheny General Hospital in Pittsburgh in February of 2006. Things were definitely not great at first but have since improved. I've been seizure free since September 2007 and just wanted to wish you good luck with everything.

Sincerely,
Josie
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  #24  
Old 06-18-2008, 04:40 PM
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Josie -- if you ever feel comfortable I'd would like to hear what happened after your surgery.
And I'm very glad it's getting better now.
I've added you to my prayers.
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  #25  
Old 06-19-2008, 09:40 AM
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I have that type of surgery. I had a bad experience with it. It didn't help me much. I hope other people have a better turn out. Good Luck to anyone that has it done.
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  #26  
Old 06-19-2008, 01:45 PM
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Nancy:

My first few months of recovery were ok - in a lot of pain and major problems with dizziness & ear ringing (which I still deal with), but no seizures or auras or anything. Then my neurologist lowered my Dilantin intake after only a few months and due to my continued problems with severe depression, he put me on an antidepressant (Lexapro). I was on it for about 5 months, but things only seemed to get worse. The withdrawal from it was severe -- even though the doctor said it was mild and there wouldn't be any problems.

I had my surgery in late February of 2006, and then had my first (totally different type of) simple partial seizure in late June of 2006. They continued on a monthly basis, averaging around two to four a month. This only added to the depression and my neurologist started me on different meds. My side effects and depression worsened, but I went back to work and kept trying to deal with it all. Then in February of 2006, I had my first and only grand mal seizure. I was rushed to the hospital and it was determined that this seizure had been caused by the medication Trileptal, which had taken all of the sodium out of my body.

I began treating with a new neurologist and was started on other meds. The simple partial seizures and side effects continued and the neurologist kept trying different dosages and different meds. My last seizure was 9/11/2007. I am now on Cloraz Dipot (Tranxene), Phenobarbital, and Diamox. Although I still have the dizziness and a lot of bad days with memory problems and not feeling well, I count my blessings and continue to make it through each day.

After over four years, I did get my driver's license back in May of this year and got a new vehicle. Needless to say, I'm still petrified that it's all going to come back any time. I usually only drive to and from work for now. Hopefully, if things continue to get better, I will feel more comfortable, but there's always that uncertainty.
(Sorry my posting is so long)
Thanks,
Josie
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  #27  
Old 06-19-2008, 03:44 PM
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Thank you Josie ... I understand everything you said (except the meds...I'm not familiar with Cloraz Dipot - that's one I've never taken.)
The surgery is no fun and it's scary as hell (well, not THAT scary) but I'm glad things are finally looking up for you.
My memory is still very bad and my word problems are almost hopeless sometimes but I keep being positive about not having seizures (Please God --- no more seizures)
Again, thank you so much for talking to us and telling what happened.

Hawke - I'm sorry you had such a hard time and rotten "luck". I wish things had been better.
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  #28  
Old 01-30-2009, 10:57 PM
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Hi Mandy, I had a right-mid temporal lobectomy in March, 07'. So far it has been 100% success. I am off of all medication and have been seizure free for over 22 months. Hope all goes well with you. To the best of luck!
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  #29  
Old 06-20-2009, 12:01 PM
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Hi Elaine. I had my right temporal hippocampus removed March 25th of this year. I have been experiencing some issues with my memory but they seem to be slowly getting better. I find that very occaisionally I'm using the wrong word in a sentence. As soon as I say it I know it's wrong and correct myself. The other annoying problem is the ability to recall names of people or places that I know I know. Its not that the information has been lost so much as that I can't recall it on demand. If I work at it it will usually come to me in a matter of 5 - 10 minutes. Again this is getting better and I was told by the surgeon that this was one of the short term issues that I would likely face. In addition to the memory problems I also have periods of depression for no explained reason. Again I take comfort in the fact that my doctor tells me this is a normal short term side effect of the surgery that should go away over time. Overall I don't regret having the surgery for a second. Next Thursday will be 3 months since my surgery and so far I haven't had any auras or seizures.

The scar on my hippocampus was due to a hereditary condition. My sister had the same scar and also suffered from seizures at a much younger age. When she was 16 she had the surgery and she has been seizure free ever since. That was 20 years ago! I will keep you in my prayers, praying that the outcome of your upcoming surgery will have the same success!
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  #30  
Old 06-20-2009, 02:07 PM
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Wonderful encouraging news Marty.
Funny I have never had surgery or epilepsy and the memory issues you are experiencing I have trouble with naturally. Names do not come easily to me, and wrong words sneak out of my mouth on occasion. I have even been known to put the milk in the cupboard.
Part of this, is I believe we have come to expect our brains to work perfectly in overdrive.

Be kind to yourself, and smile at lifes glitches.
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  #31  
Old 10-13-2009, 10:52 PM
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I was one of the orginal people that had the VNS. It didn't decrease my seizures, but dropped the intensity and duration quite a bit. I had the right hippocampus removed in 1999 and I was seizure free for 7 yrs.
In the last several yrs my seizures have been increasing, but no where near what they were. I now only have 6-8/yr, compared to 4-5 every couple of days. Recovery time was abou 6 weeks. I should have taken the other 2 weeks but was bored and missed work. LOL
The strangest test I had was the WADA test. Let me know what you think of it. LOL
If I can help, just let me know
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  #32  
Old 11-19-2009, 04:36 PM
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Hi mandy

Your story sounds very much like mine. I had epilepsy as a baby & used to take grandmal seizures, my seizures stopped when I was about 2 1/2 & I went 22 years seizure free. In May 2002 I had a seizure, since then I have been having partial siezures or auras on a regular basis. I have tried many Anti Epilepsy Drugs & was recently put on Neurontin which is the 5th anti-epileptic drug I've tried.

I recently saw my neurologist & he told me that MRIs I have had have shown I have scarring on left side of my brain. My neurologist told me that because of the scarring on my brain & the fact the meds aren't stopping the seizures I may be a candidate for surgery.

I have to go see a neurologist but I can't get in to see him until next year.

I have done research into the surgery & realise what risks there are & that the surgery may not stop the seizures.

I was wondering how you were going after your surgery & if the seizures have stopped.
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  #33  
Old 11-19-2009, 09:23 PM
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Hi Mandy,

I had Right Temporal Surgery a little over 4-1/2 years ago. Unfortunately I just recently started seizing again (May 09), however, my seizures are not as bad and they only seem to be nocturnal now. I have Complex Partials today whereas prior to surgery I had tonic clonic's, complex partial's, simple partial's, etc.

Today I struggle with visual memory (like being blind in the mind, but I get a glimpse) but my visual memory wasn't working so well prior to surgery anyway since that's where the abnormality was. Other than that, my verbal memory improved GREATLY as well as my ability to focus. Although now that the seizures are back it's slowly starting to diminish, but still better than prior to surgery.

The one thing I would've done differently was to ENSURE that I was on a medication that I could tolerate. My recovery lasted a good 2 years with every day getting better and I blame 90% of my recovery problems on the medications. For me, the newer meds like Keppra and Lamictal I don't like at ALL since I get way too many side effects, but I had only started those meds about 6 months prior to surgery. After surgery they want you on meds for 2 years but because I was having so many problems with the meds they took me off a year early and took me off Keppra only a few months after surgery and left me on Lamictal and I had no choice because they don't like messing with meds after surgery and was even reluctant with Keppra but had no choice. So, if you do choose to go through with it just be SURE you're O.K. with the medication that you choose. The problems solely from the surgery (brain problems) I didn't have much problem except for a few wacky things while my neurons were reconnecting, but each thing only lasted a week or two. I would get into some of the wacky things, but because we're all unique these things may not even happen to you so I wouldn't even want you to think about it. However, should you have the surgery I'll be here should you have any questions afterwards.

Personally, I would do it again even though today I have seizures (4 years later) because they're definitely not as bad and there are many people who get lucky and never have another seizure.

Good luck with your decision and keep us posted.

Kelley
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  #34  
Old 11-19-2009, 09:31 PM
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Marty


Originally Posted by MartyVK View Post:
I have been experiencing some issues with my memory but they seem to be slowly getting better.
Marty, I think your doctor is correct since I had RTL and I had many of the same problems and every day did get better, however, it was slow process. I was told to give yourself a good full 2 years after surgery to feel 100% back to normal. For me, the memory issues not only slowly went away but my verbal memory (words) was better than ever and my ability to focus was a whole new finding for me since I never had that ability. I also had problems with writing things and wondering whether or not it made sense and this too went away. My visual memory (remembering faces, places, landmarks) is not so good since that was the area that had to be removed, but it was never 100% anyway. I do notice the difference today, but I've learned to adjust. The depression also went away (which I had really bad) but I still think that was more due to the medication than the surgery itself. I was on Lamictal (Keppra too for a short while) and I was getting MANY side effects which I think attributed to the depression more than the surgery did. So, just be patient and everything should subside. Kelley
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  #35  
Old 11-20-2009, 04:15 AM
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Hi Mandy

I have just been sitting here reading through some old posts on brain surgery, and I wondered if you could fill us in on how you are doing, and how things are going for you?

I'm not doing too bad, I was down in London on Wednesday seeing my lovely professor, we are playing around with my anti-epileptic drug's as I am still having problems. I have to say that they are much improved compared to how they were, but I am having simple partials more often that complex partials, but like I've always said, they are for me, the worst part of having epilepsy!! I was trying to explain to him how my dreams are so incredibly vivid and real, and I seem to have more problems first thing in the morning these days, it's almost as if my brain is struggling to work out wether I am fully conscious or still in bed asleep, if that makes sense? He agreed with me, that there is a fine line between being asleep and awake, and I really have to get up, wake myself up, and get going, I can't gradually wake up, but I've always been like that.

Please fill us in on how you are getting on, did you have the surgery, or are you still deciding wether to go ahead with it, how is your memory doing, and generally let us know how you are? Please remember, that we are all in "the same boat" here on CWE, and I always say this, that we must all stick together and support each other, ban the use of that bloody awful word EPILEPTIC, and spread the word to the general public, that we are as capable and normal and able as anyone else, and having epilepsy does not mean that we are possessed by evil spirits, going to be thrashing around on the ground like some demonic lunatic, peeing ourselves, rolling our eyes, foaming at the mouth!!!! God how I loathe that word!!! I think there is such a misconception with this medical condition because of labels like this, labels that are attached to such archaic images. I really am going to try and do my bit for National Epilepsy Week here in the UK next May, and I really hope to have my book completed and published in 2010!!

Anyway Mandy, I really hope all is well with you, I really hope to hear from you soon, and that you are still smiling? As we say over here, "Keep yer pecker up gal!!!"

Lotsalove

Lainey xxxx
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  #36  
Old 12-10-2009, 01:34 PM
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I had the tip of my left temporal lobe removed 3 years ago. I haven't had a seizure or anything to do with epilepsy since. My memory is a big issue but it was like this before my surgery.

I've used a cool app on my blog to make a brain surgery time-line. It really was a big step forward in my life.
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  #37  
Old 01-18-2010, 05:53 PM
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I had the tip or 2/3 of my right temprol lobe removed in 1998. When they map my brain now it responds like its still there. What do you think about that.
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  #38  
Old 01-18-2010, 06:10 PM
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Mike, I don't find that at all shocking. Although I'm not a doctor I think it actually makes sense. Our brains have memory and if you think about losing an arm it's still possible for your brain to remember having the arm and therefore you can even have an itch on the arm. The idea of that BLOWS my mind because that idea makes me think one would go insane having an itch on something that's no longer there. I believe this is termed as the "phantom". I think our brains, just like anything else, compensates for the loss. Like I said earlier, my verbal memory has never been better after losing the visual memory.
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  #39  
Old 01-19-2010, 08:47 AM
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I think thats why people can learn to write with their oppisite hand. They changed my mother and my wife in school. Years ago they would change left handed people at a earily age.
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  #40  
Old 01-24-2010, 10:19 AM
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Originally Posted by KelVarQ View Post:
I believe this is termed as the "phantom". I think our brains, just like anything else, compensates for the loss. Like I said earlier, my verbal memory has never been better after losing the visual memory.
From Dr. Ramachandran, "Phantoms In the Brain"

http://www.youtube.com/watch?v=<obje...mbed></object>
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