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UPDATED: Wed, 11/18/2009 - 4:03pm
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mark_88
Surgery is a great life change!
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so I've been seizure free since day one of my temporal lobectomy. nothing else to worry about. it was allll worth it. now for those who are worried about surgery DONT BE its great! Nothing esle to say.
By mark_88 at Wed, 11/18/2009 - 4:03pm | 146 views | 22 comments
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Recent Comments on this Discussion
I recently went into the hospital for a "sleep deprived EEG." They deprived me of sleep, took me off my meds in the hopes that I would have a seizure they could closely monitor while I was having it. "Lucky me", I had 3 seizures while they had me hooked up with electrodes to see where they were coming from. My Dr added Keppra to my meds to see if that would help control them along with the Lamictal I have already been taking. If that doesn't work, surgery is the next option. From all of the good things I've read here and elsewhere online, I'm ready to go ahead and have surgery if it will control my seizures and get me off all these meds. I'm not afraid of surgery if I am a candidate. If it will control or stop my seizures I'm all for it.
good for you...take it if offered! it does very well... dont listen to the negativity its just bullsh*t from negative people. I listened to nothing but positivity and kept my head up and now im seizure free and happier than ive ever been in life. that was the happiest moment of my life and its still going!
Hi Mark,
It's great to hear it went so well. I am set to see the surgeon on 1/26/10 and set up a date. I too have the temporal lobe area effected. How large an area do they remove to do the surgery?? No one has told me any details about what happens in the hospital and how U feel after. Can U share? Thanks.
My surgery lets say first off was VERY SUCCESSFUL so DO NOT WORRY. My scar tissue was found on my left hippocampus which is right under the left temporal lobe so they first had to remove the temporal lobe and then the hippocampus which in total was roughly 16 cubic cm. I was awake for part of the surgery to do the brain mapping where the surgeon has the electric sheet on your brain and makes you say things so he finds which part to take out. He made me count down from 20 about 10 times and each time it got harder and harder feeling like you just couldn't say they next number. Then I was also awake for my psychological testing (another mapping test) so he knows where and where not to cut. From that point on I slept. When I woke up my neck hurt from the position I was lying in during surgery but from that point on you have a pretty strong headache. Mine lasted for about 2 months before it was completely gone. The headache shouldn't bother you too much as long as you take your tylenol or Ibuprofens. I was out of the hospital within 5 days and I was bedrested at home for about 3-5 weeks. It takes a while before you get your strength back. I don't have all of mine back yet but enough to go back to work. My first walk off my property was the first big step that made me proud to know I'm getting better. Any other questions let me know I'll help you out. P.S. If you feel like you get these quick flashes of a seizure after surgery don't worry. I thought they were auras but no. All it was was that warning sign you kinda feel before a seizure comes on that you're so use to feeling. You just have to get use to not having seizures and it slowly fades away. Good luck.
It's great to hear another success story about temporal lobe surgery, congrats on the success of yours. My Dr has suggested the idea of a temporal lobectomy. I'm all for it if it gets my seizures under control. The only thing I'm concerned about as far as the surgery itself is scarring. I've seen video and pictures of lobectomies that have left hideous scars. How did your surgery turn out as far as scarring goes? Scarring isn't a deciding issue for me if it will help control my seizures, I'm just asking.
dont worry about scars nothing to worry about
Truely happy for you. Maybe there's less risk due to your age. Did you have to ask several doctors-their opinions?
I've tried every med, have the vns implant and still have seizures. Two doctors have said it wouldn't be worth it for me to have surgery.
Glad it's worked out for you.
hey teach...sorry that you dont get the oppertunity...any perticular reason? my story is that I've been on several and several medications and nothings ever been working for me so my last option to stop the seizures was surgery. hearing that was making it all feel like a dream but true and i was sooo happy. so I was sent 2 hrs away to a hospital famous in Canada for their brain surgery (epilepsy studies especially) for a week long of eeg testing and psycological testing so they can tell if im a candidate for surgery and i was thk god. 3 months later i got my surgery. my doctor where i live had nothing to do with it but to send me there. from there i had a specialist, a surgeon, and a neuropsychologist cover the rest.
hi mark,
i've been on all the meds for ep.(almost all). This lastest Vimpat is not doing anything. Infact I have side effects. i only have 4-6 seizures monthly and a little nervous about surgery because my condition isn't servere enough for the risk. Seizures occur on both sides the doctor tells me.
What was recovery like? Has your speeking ability changed? Do you have the VNS?
Glad to hear your good news.
teachergreen
my speaking hasn't changed but specificly i have the "word on the tip of my tongue" effect when i can't exactly think of the word i wanna say. and i've never had the vns done no.
That is the best! How long ago did you have this surgery? Can you tell me where it was?
Thank you,
Paula
Hey paula...I just got my surgery done on october 9th and I haven't had a seizure since and its sooo great! Its like i feel freedom. ability to do anything i want to now. I'm from windsor ontario and my surgery was 2 hours away up in london ontario. i mean its only been a month n a half and i feel so alive and happy. so worth it.
it must be nice to have that option, my son is not ideal since he have seizure activities occuring on both side of the brain
I refuse point blank under any circumstances no matter how ideal the conditions to have anyone mess around in my temporal lobe. I am kinda attached to it.
I used to think that too...but once the meds get bad enough....I find I have changed my position on that. I now take FOUR prescription medications at their max level and still don't have full control. It got so bad that I was getting dizzy spells and other signs of overdosing. I can't change meds, I have tried them all already.
Surgery was sounding pretty good. I pray after my WADA test I am still a candidate. I have already done all the other testing.
most likely you'll get the surgery...hopefuly
i kinda was too but would u rather have seizures or none with freedom? sugery is NOTHING to worry about and it completely makes you wish you had it when your first seizure came around.
Congrats to you!! I had a left temporal lobectomy in December 2008 at Tampa General Hospital (GREAT staff). I've been seizure free since and wouldn't change my decision a bit.
Congratulations!!
I know how you feel. I had a right temporal lobectomy almost a year ago at the Medical College of Virginia (MCV). I have been seizure free since, that even surprises my doctor's! I wouldn't change anything about my decision.
ya my surgeon was trying to be soft about all of the surgery process description but i just told him at the end....no questions doc, lets do this...and he was in awe that i wasn't nervous.
ya my surgeon was trying to be soft about all of the surgery process description but i just told him at the end....no questions doc, lets do this...and he was in awe that i wasn't nervous.
As your instinct said YES! mine says NO!. The last time I had a reduction in medication I had status epilepticus. Spent two days in ICU unconscious. My MRI comes out normal, my EEG shows left temporal lobe problems at the cellular level. That said I am very happy surgery worked for you. I am happy if my meds control the seizures.