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Selective Amygdalohippocampectomy- memory loss & emotion after surgery

surgery was 18mo ago after 8 years of seizures (grand mal, nocturnal, complex partial). surgery was a must due to seizures of course, but the memory loss had started in small bits that we were noticing about a year before. now as a result of surgery, i have about 10 years completely wiped and the rest of my life in bits and pieces. for example, i remember one of my boys being born but not the other. i don't remember being married but do remember meeting my husband. also, names of friends I've known for years are gone. worst of all is my emotional understanding and connection to others, things and life events after surgery. I'm a different person. i have no connection to people, places and things i used to love and enjoy, or find meaningful and support in. it all feels void and empty. My marriage is different to say the least, as well as my relationship with my kids.i Feel like im waiting for some miracle to open my brain to some original cavern to find ME and she isn't there. drs did another WADA a month ago and were shocked at the results - the decline was enormous! if this were the original result, surgery would never have happened in the first place- WOW! sad and lonely isn't a fun place to be when there isn't any real connection to anything.

Comments

Sorry to see how it's

Sorry to see how it's affecting you Singsqueen. What I can tell you about challenges with memory is that it will differ from patient to patient depending on the mapping of the surgery. For me, I had a lapse in names. That and my speech was also affected. The challenge at times is word-finding. That said, these are things I was told about prior to surgery. Post surgery, depending on the mapping of the areas, comes down to a lot of patience. Yes it has to be frustrating given you are only seeing what seems to be missing at this time. For me it wasn't that frustrating because I had geared myself for it.I underwent speech therapy. I was diagnosed with Aphasia, a condition that plays out in about three different ways. But my speech therapist was so great. She devised some tactics I could put in place and to practice it very often. In terms of names? I make sure I inject the person's name in the conversation a few times. That usually increases the probability of my ability to recall the name. My point? Start with what you have. If you only keep on seeing what you are missing, well, that feeling can make to miss out on what you do have.You're a mother so it can't be fun if you can't recall certain designated specifics of your kids, like their birth, evenly. That said, you don't have a total wipe out. After all, you were able to recall the birth of one of your sons.Post surgery, the brain has to remap. That means a lot of things will eventually show up in pieces. Like I said, in my case, initially the challenge of finding words as I spoke was a lot worse than it is today. What helped with the improvement are the strategies my Speech Therapist outlined. To quote her; "What you can't find a particular term, try to find a synonym. After all, the harder you try to recall that particular term the more difficult it will be for it to show up." And it's true. That is how the brain works. Overwhelm it and those functions are affected even more. Find ways to pause and find another term. Or, at times, I simply ask the person I am speaking with "How do you say?" and I lay out the point I am trying to make. Post surgery is not about assessing your intelligence. After all, the information is still there. Just difficult to access. As you can see, you don't recall your marriage but you do recall meeting your husband. Similarly you don't recall the birth of one of your sons but you do recall that of the other.As my neurosurgeon said to me post surgery; "My job (neurosurgeon) is easy. Your job (recovery) will require a lot of patience." Ironically, patience is something I had little of. But after seeing how patent he was with my surgery, well, that drove me to find that patience.Try to take on this philosophy Singsqueen. Well, it's one I go by post surgery. It's simple. "Try not to eye what you don't have because  that can make you miss what you do have." That was the approach of my neurosurgeon prior to surgery. After all, we were successful in mapping the areas related to the seizure activity. But we had a setback when three of those areas were just too close to language and speech and memory to be approved for surgery. My neurosurgeon told me we could repeat the language mapping, except during surgery. And, given Mathematics is my subject, I assessed the probability and said; "I doubt all of those t three areas will fail the surgery test. One might be good to go."Turns out we were able to remove 2.5 of the 3 areas that had initially failed the language mapping test. And that's because they woke me up in the midst of surgery and had me answering questions while my neurosurgeon was able see and to focus on those three areas to see how my verbal responses sounded as he made contact with them. The point? Focus on what you have, not just what you're missing. That allows you to be patient in taking on what you may be missing. After all, some of it may be temporary. Notice I said "some of it." After all, only time and practice and how you assess yourself will make a difference in you being less critical of yourself.That's my philosophy. It helps you reassess things and not be overly pessimistic about yourself. Had I focused on the failure of those three areas that failed the language mapping test prior to surgery, I probably would have given up on surgery. Best Regards

Hi Singsqueen,Thanks so much

Hi Singsqueen,Thanks so much for sharing your story, it's sounds like you’ve been through a lot. Please continue to follow-up with your healthcare team and discuss any increase in feelings of depression, changes in behaviors, symptoms, side effects or seizure types/frequency. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVis... Recovering from epilepsy surgery is a journey. 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/surgery/re... is common for people with epilepsy to report having difficulties with thinking and memory and to experience feelings of depression. You can learn more about these challenges with epilepsy here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memoryht... It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. 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-concerns Or contact your local Epilepsy Foundation: epilepsy.com/localsupport,  For assistance finding resources, support groups, events, and programs in your community.You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000  contactus@efa.org  , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support.  It's also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   The Wellness Institute:  epilepsy.com/wellness   ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools 

Whats good sweetheart? I had

Whats good sweetheart? I had surgery in my right temporal lobe 3 yrs ago last month an was diagnosed with epilepsy 10yrs ago in Sept. I'm 31 now. Was having simple/complex partial an grand mals. I'm sure all my szrs over the yrs is a factor in my memory loss but post surgery it ain't great either. I can be pretty forgetful, recalling memories can be difficult. Even if someone tells me about our past experiences, I might remember it. Can be hard to find a word in a conversation or when I say a word the letters might be mixed up or something similar. As to your emotional understanding/connection I feel pretty much the same. Not having much connection to anything that you used to love an enjoy, find meaningful. I used to write alot an play my bass which was extremely therapeutic to me. I don't have much desire to do those things anymore an when I do it's not the same. I do feel void an empty as well. Certain bullshit going on in my life an others around me doesnt help. Being 31 an relying on my mom an seeing everyone else moving up doesn't either. I feel like I'm waiting for some miracle to find ME an I can't find em. It's weird but ive refused to cry for awhile now. Even if I found ME I'm not sure id even recognize that person. Was on 3 different meds an recently got off 1 an cut another in half, see my Dr soon might lower the dosage again. Which is amazing but I feel like I should be more excited than I am. I would hope that reading this you'll find that your not alone an maybe bring some sort of comfort to your mind. Since thats what your words have done for me 

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