Community Forum Archive

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 contactus@efa.org, 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 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 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

Hi Anonymous,I would get a second opinion. For the simple fact, that some of these hospitals really "sell" you and promise alot!!!! I've had the surgery and my seizures became worse and more frequent.  As far as the doctors I had, at MUSC, Medical University of SC., could have cared less afterwards.  I lost a lot professionally and personally.  I felt as though the doctors were just looking for patients  to "study," for students, to some degree. You may have an excellent neurologist, and I'm sure you do........Do all the research you can on everything and everyone that will be involved  before and after surgery, including doctors, hospitals, and medications. I'll be glad to tell you more.  Good luck!     

Hi,I just had left temporal lobectomy on dec 2. I've had seizures since 2008 and they've all been tonic clonic. Oh right, I live in Canada so my surgery was free anyway it went amazingly well. I had memory problems afterwards (obviously lol) that were pretty bad but have slowly gotten better. The part of my brain that had gotten scarring from all of my seizures was basically removed and I haven't had any.major issues aside from my right hand deciding to do it's own thing and throw whatever I'm holding lol.Hopefully that helps!

The isolation you’re going through is no different than me. Through high school I had few friends. The lack of involvement (school activities) and inability to drive, made school difficult. There was no true teenage life to enjoy, unless it was with family (not peers,)My eventual surgery was focused in the left temporal lobe, where the abnormal brain activity was monitored and activity spiked when a seizure hit.The seizures started around 2nd grade, as petit mal, and stretched over 40 years, progressing into partial complex in high school. In 2013 the VNS (nerve stimulator) was attempted. Like the doc stated, though, it didn’t stop them. In 2017, after numerous falls, head concussions and other injuries, the green light was given for surgery. My fear was that the continuous falls would bring a potentially detrimental head injury.The physician started the necessary tests, including an MRI, Neuro-psych test and a video EEG. From these, the physicians will determine whether you are a candidate.I suggest, if you’re seriously considering the surgery, start writing down questions that you (and family & friends) want answers to. This is a serious step, and you need all questions answered before proceeding. As for the aftermath, I’ve been free of seizures for two years. Co-workers have commented on me being more alert, the frequent falls have stopped and other improvements have come.Should you need other questions answered, post them on this site or communicate with me via Facebook.Take care,