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Has anyone had surgery?

Mon, 12/09/2019 - 08:33
I have Temporal Lobe Epilepsy due to a tumor in my right temporal lobe... My surgeon is talking surgery. Has anyone else had this surgery before? Or any type of resection to correct epilepsy? I need testimonials. Why did you get the surgery? How effective was it for you? How do you feel now? If you haven’t had surgery, and still are living with this disorder... how do you feel? Because I feel alone. I want to talk about it 24/7 but I can tell everyone around me is tired of hearing about it... so talk to me. I need a conversation with people who get it

Comments

Hi, Thank you for posting and

Submitted by Anonymous on Mon, 2019-12-09 - 09:56
Hi, Thank you for posting and we understand your concerns. We know that being diagnosed with epilepsy can be upsetting and make you feel isolated. However, it’s important to remember that you are not alone, and we are here to help support you. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsFor additional information about Temporal Lobe Resection, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/types-epilepsy-surgery#TemporalPrior to making your decision about surgery, your healthcare team will review what options are possible for you and will help guide you through the proper evaluation and testing. It is also important to remember when preparing for epilepsy surgery that every individual experience and path is different. Working together with your epilepsy team is key to understanding your epilepsy and the best treatment options for you. Talk with your healthcare team about any concerns you may have and discuss your personal goals and expectations for surgery, by visiting: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/goals-and-expectationsReview our list of commonly asked questions about epilepsy surgery, learn more about the recovery process and common themes for people living with epilepsy & family members during their journey through epilepsy surgery, here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgeryAdditionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 [email protected], where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline   Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates  to find support groups, events, and programs in your community.

HelloI have right mesial

Submitted by jimmieD on Sun, 2019-12-15 - 19:04
HelloI have right mesial temporal lobe epilepsy. I had surgery at UC San Diego on June 4th 2015. Was diagnosed at 22 and had surgery at 27, I'm 31 now. I chose to have surgery cause my seizures were interfering with my daily life. Not being able to drive, injuring myself multiple times, few times walking up the hospital. It was also my early to late 20s that I feel was almost stolen from me. All that an a few other things made me consider surgery. The statistics are high to be seizure free after the type of surgery for my type of epilepsy. That was probably the deciding factor in my choice for surgery. Get 3 different types of seizures, simple/complex partial seizures an gran mal seizures. Had around 6 seizures a month. a combination of the 3, wasnt just gran mals. I've had seizures since surgery but that's from forgetting to take a dose of my meds. Doing illegal drugs on occasion didn't help. Besides that ive been seizure free. I was taking 3 meds dilantin, lamictal and vimpat. Ive been off the dilantin for awhile now and taking half the dose of the lamictal now. See my Neuro this week an I should be lowering the dose Or getting off my lamictal. Ive been seizure free for probably a little over 2 yrs now. Have had my license and a car for awhile now. I just need to stop being a punk an Go get a job. I dont think there has been much side effects from it since ive had so many seizures for so long its kinda hard to tell you if much has changed. My memory wasn't the best before surgery. Speaking such as forgetting a word, mixing a letter in a word or word in a sentence was nothing new. The possible side effects from meds doesn't help. Regardless of my situation the decision for your surgery would have to come down to your docs opinion on the risks and benefits of surgery. There is many tests you'll have to go through to tell you if you're a good candidate for surgery. Every case is different since the cons of surgery might out weight the pros. Hope this helps and you shouldn't let epilepsy define you.Good Luck  

Hi SommerisbellApologies in

Submitted by PrinceCharming1984 on Mon, 2020-01-20 - 17:50
Hi SommerisbellApologies in advance for the honest answer.I had Petit mal whole of life(1984 onwards), tried loads of meds, all helped but none cured.Had a right temporal lobe hippocampectomy in 09. Was told it was the only curable option by consultants.Done loads of surveys etc before making the decision(cos i was only 24 and parents wouldnt help cos I was an adult at that point, but I needed someone to tell me what to do)It was fully effective until the consultants assistant removed me of tegretol before removing me off keppra(was on tegretol whole of life), auras have begun and these now developed into grand mal(collapsed 6 times in the last 3 years).Its taken up to this point to rebuilt the level of retention I had back in 09(Cos it may effect memory, which it did)So to answer your question, should you get the surgery, I would say no.Its the lesson of "you dont know what you have till its gone", why would you risk the good quality of life you have now for what "may" or "may not" be a better or worse one.Is it life threatning? If yes then surgery may be the only option, if no then it should just be part of everyday life for you and be normal at this point.Is it interfearing with Life to the point where you cant cope or its become dangerous for you to walk down the street incase something happens?If in denial about it, you need to move to acceptance and just embrace who you are cos at the end of the day, shit happens and life isnt fair, we just get on with it.Sorry for the honest answer, but thats My2C

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