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memory problems....HELP!

Hello to anyone out there who has had an amygdalohippocampectomy of the LEFT temporal lobe! I have a little question.....I'm in the process of scheduling surgery at Mayo, but I am really a bit anxious of the possible short term memory problems that could arise as a result of surgery.....can anyone who has had surgery on the LTL tell me a little about any short term memory changes, verbal memory changes they've noticed? It really worries me......anyone, please help! Thanks so much..... KR (Kristina)

Comments

Re: memory problems....HELP!

Hello Kristina,
I had a LTL in Sept of 2006 and have been seizure free since. I have not had any memory loss whatsoever. Also, my speech was unaffected. I am in fact back in school in preparation for University in 2008. Memory loss in and of itself can easily be dealt with if need be. I wouldn't get all worried about this because the results will be well worth it. I have absolutely no regrets. If you have any more questions, feel free to ask.
Sincerely,
Chumtochatwith2

Re: Re: memory problems....HELP!

Wow!
That's such great news...I can't tell you how much better it makes me feel to hear someone say so--someone who has experienced it all. Congrats on being seizure free as well AND back in school! That's really wonderful. Where was your surgery performed? I have surgery scheduled for Aug.24 at Mayo and am a little nervous about it, although I feel it is the correct decision. I was wondering: how long have you had epilepsy? Did you notice any memory problems before surgery?

I've had seizures for about 12 years and have had a lot of problems with short term memory--I feel I have to work twice as hard to learn the material (not because I can't understand it, but simply because it can be hard to "store" the material as I'm learning it). I'm just wondering because actually I will be back in school as well, as soon as my brain will "allow." Do you recommend doing any memory exercises on your own or in rehabilitation? Thanks for your mail--it has made my day!
All the best to you,
Kristina (KR)

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Since my surgery the only problem is remmebering names {not any that I knew before my surgery. It seems to take me a little longer to remmeber names but I eventually do. Hope this helps
Ken

Re: Re: Re: memory problems....HELP!

Hello Christina,
My surgery was performed at University Hospital in London, Ontario. I have had epilepsy for about fifteen years and was having up to five seizures a day. My seizures were triggered by music and since my surgery I always have my music playing now and I am soooooooo enjoying it. I have never really had any problems with memory. I have always done well in school and haven't had any problems with absorbing new material at all. I guess it depends on how your body responds to surgery. Just wait and see and then you can decide what needs to be done when it's over and done with. My recommendation would be just take it one step at a time and you will eventually come through in the end. I had a lot of nausea afterwards so just take it slowly and get your rest. I wish you luck. I know that I would definitely do it again if I needed to. I am thankful for the wonderful medical care that I have received. My doctors have changed my world totally.
Sincerely,
Chumtochatwith

Re: Re: Re: Re: memory problems....HELP!

horray for london!!!!!!!!!!!

Re: memory problems....HELP!

Re: Re: Re: memory problems....HELP!
Since my surgery the only problem is remmebering names {not any that I knew before my surgery. It seems to take me a little longer to remmeber names but I eventually do. Hope this helps
Ken

Re: Re: memory problems....HELP!

Thanks to both of you! Hearing positive comments regarding the results of LTL surgery is always very helpful and reassuring. It's such a large decision. Who knows---perhaps my short term memory will improve! We'll see. Just have to take things a little at a time, and work on my memory after surgery through reading and other activities. Any interesting recommendations for memory improvment other than reading and crossword puzzles after surgery? (I love reading, but most likely stink at crossword puzzles)

Dear Chumtochatwith2: How long did you wait before taking classes again?

Thanks also, Ken: Has your problem remembering names improved with time?

Thanks to everyone: I'd enjoy keeping in touch--questions always pop up. Wish me luck with surgery Aug. 24! If anyone is intersted, I'm up for e-mailing.
KR (Kristina)

Re: Re: Re: memory problems....HELP!

Hello KR,
well I had my surgery in September of 2006 and decided to go back to school in May of 2007. So it was about eight months afterwards that I felt confident that everything turned out great. The possibility was always in the back of my mind but I just needed to be sure before I took that step any further. I actually love to read and have always liked the challenge of crosswords. I have been doing them for years now. Wish you luck.
Sincerely,
Chumtochatwith2

Re: Re: Re: Re: memory problems....HELP!

Hi KR:

Just found this thread, so I realize you won't get the message prior to surgery. Just wanted to wish you all the best with your surgery. I had a LTL done on July 17th at Toronto Western Hospital. So far seizures have been under control, just trying to deal with the after-effects now. I personally haven't found memory to be a problem, but have always been an avid reader and am reading again since getting home from surgery at a pretty good rate.

Again, all the best for a speedy recovery. You'll do fine, just try to be patient with yourself.

Re: Re: Re: Re: Re: memory problems....HELP!

Good to read your mail.....
Yes, patience is an absolute necessity. I just got back a day ago from Mayo, so currently I feel a bit tired and slow, but I'm sure things will pick up little by little. Please let me know how you are doing......I also wish you all the best.
Regards.

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Hi KR:
Glad to hear that you are home and seem to be doing okay. Just be patient with yourself, give yourself some time to get back your strength.
I've been having a hard time with my memory these last four days so I'm trying to contact my doctor to find out what's going on. I've been told that it may be nothing, but I'm not really willing to just let it go at that. Hopefully I'll hear from the doctor soon and straighten out this stuff.
Best wishes to you as you recover,
Lorraine

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Hello Lorraine,
Thanks for your mail--having support from people who've gone through a similar ordeal is always so helpful. Please let me know how things go regarding your memory--are you having trouble remembering recent events, or people's names, or both....I hope things improve for you, and that you feel that all your questions have been answered by your doctor. It's tricky sometimes with these problems or questions one may have regarding memory....sometimes you feel like the physician doesn't know half of what you're talking about, and you wonder what was even the point of asking. I've felt like that sometimes. But I hope you have all your questions answered to your satisfaction--you deserve it. Best of luck!
Let me know how things go! I'm trying to take one day at a time, being patient with myself. As you said, it will take time and patience. Again, good luck to you--I just think of things one day at a time....and boy, does time fly.
Regards to you,
Kris

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Hi Kris:
Just picked up on this thread again so figured I'd give you an update. I went to see my neurosurgeon yesterday, so that was just a couple of days after my two month anniversary. I continue to be seizure free, which pleases both of us of course. He's also pleased with how the incision site has healed.
I spoke to him with my memory issues, citing some specific examples - apparently writing cheques that I don't recall, finding cheese in the pantry (?) and a day when I stared at my computer, trying how to figure out how to get my e-mail. That kind of freaked me out. Anyway, his short version of the answer was that you can lose some of your memory for a period of time, and they give it six months before worrying. Hopefully it won't be that long, but who knows.
The headaches that continue to plague me (although not as bad now) can also continue for about six months, as can the numbness and any mood swings (depression?) that we may go through. He asked me if I'd encountered trouble finding a word at a given time. Said maybe occasionally, but it hasn't been a large problem.
I have to follow-up with him in six months, at which time he expects much of this to have gone away. Something that had been pointed out to me by someone in chat was the fact that I was "different" lately. When we tried narrowing down what that difference was, it was pointed out that I was more quiet. Not sure if that's due to the headaches or if my concentration's just not what it used to be.
Still, I'm clinging to the hope that the seizures will remain to be gone and that everything else will come back in due course.
Hope all continues to go well for you. Keep me posted.
Regards,
Lorraine

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Hello Lorraine,
Sorry to take so long responding! How are you doing? I hope your pain is slowly improving, and that things are going well. How is your feeling of numbness? Has it changed at all? Do you find it any easier to remember things, or to return to a thought you put "on hold" for a few moments? Do you find yourself sometimes feeling a little more serious? Sometimes I do. In any event, put very briefly, I do hope you are feeling better! Please let me know what else is new, how you're feeling, any changes you're noticing. (have you noticed any improvements regarding short term memory per chance?)
I guess you are at the moment "celebrating" your 2.5 month post surgery anniversary....for me it's been 1.5 months. Time really flies. I know I won't look forward to going back for the whole workup, including memory testing, hospital stay, the usual. But I must say I don't notice a hell of a lot of difference regarding memory. I notice I am continually learning new things about small details. It's a little harder for me to recognize faces, and I do notice the fact that it is a bit more difficult to hold on to thoughts....that's my biggest problem. It can drive you nuts when you're listening to someone and you have a burning question, and then realize just as you're about to speak that you have not only forgotten what you're going to say, but also what you are talking about to begin with. All this of course is nothing new, just a little bit more of a problem. But I'm adjusting. I don't regret my decision whatsoever. I've actually been told that I speak more quickly, which is fine with me. Just dealing with the pain, continually "being reminded" by my brain (as weird as it may sound) that everything you do (reading, walking around, etc.) must be done in moderation. You know the feeling.....you learn something every day. Do you ever feel like suddenly things around you are so new? Sometimes I do. Just curious.
My only worry is the fact that I did have a large seizure a little more than two weeks ago. I talked with my neurologist via phone, and he was upset. I'll just have to see what happens. As long as I at least experience an improvment (a pronounced reduction in seizures), I'll be happy, even if I'm not 100% seizure free. I feel I'll be optimistic, but realistic. Everything else is pretty well (except for the fact that, Murphy's Law, I've now developed a painful ovarian cyst that might have to be removed surgically...I don't know why the hell now of all times) trying to be as optimistic as I can. Isn't it weird to feel so numb on part of your head and face? It will go away in the long run. Everyone I've spoken with has said it takes about a year to physically feel back to yourself. Anyway, I hope you're doing well, continuing to improve. For both of us, I'm sure things will return, as you said, "in due course." Please let me know what's up with you when you get the chance. I hope all is going well!
Cheers,
Kristina

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Hi Kristina:
Sounds as if you're doing really well for someone who's only a month and a half post-surgery. Congratulations on your success so far. I can sympathize with how you felt having that seizure a couple of weeks ago, still as you say a marked reduction is definitely a heck of a lot better than going through seizures all the time.
Numbness continues to plague me, and I sometimes find my head bugs me when I go to sleep at night. Not sure if it's a subconscious thing or what. Just seems like if I lie on my left my head feels weird, but if I lie on my right it's uncomfortable too. My shoulder's really bugging me. Not quite sure why other than to say I injured it several years back during a seizure. Did rehab, etc. and it seemed okay, but now I think I use that arm more for carrying the heavier things. Probably a bad plan!
With regard to speech and memory issues I sometimes find myself using the opposite word to what I was looking for, i.e. yesterday instead of tomorrow. Weird!! Memory has never been great with regard of recollection of faces. Was embarrassed today at the mall. I was standing in the checkout line, when all of a sudden I heard someone ask "Are you Lorraine?" Standing there thinking who is this person??
Turns out she taught me when I was in grade 6. Still didn't help me a great deal and she didn't look old enough to have been my teacher back then, lol. Was neat to run into her, but kind of freaky at the same time.
I sometimes find myself making errors when I'm typing something. The other day I sent a message to someone who was going away. She was going off to Rome, but instead of telling her have fun in Rome, I typed it as have fun in room, lol. Not sure if that was just a typo or the brain doing its own thing again.
Still, overall I can't complain with how things are going. I see the epi this Thursday so it should be interesting to hear what she has to say. Hope all continues to go well for you on the recovery front, and I am sorry to hear about the cyst that may have to be removed. I sincerely hope that it rectifies itself without the need for surgery.
Take care of yourself, and keep in touch!
Lorraine

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Hello Lorraine,
It's quite helpful to be able to "talk" with someone, especially regarding how one feels after something so personal as epilepsy surgery. It's always interesting and helpful to see what you have to say regarding your case. I really enjoy keeping in touch, and hope you are also slowly continuing to improve. Since we have an old dial up system which takes forever to do anything, accessing the internet has always seemed like a chore to me done only when necessary (especially when you only have one phoneline!). But at least now I have a reason to go online when I feel up to it!

I'm sorry about your shoulder--I really hope you are able to find some relief regarding the pain. How do you feel overall? I feel somewhat stronger, but going out of the house for a little walk still is challenging. It's funny how you can be walking and then suddenly feel a surge of pain……even if I felt tempted to walk further, my mind tells me absolutely not. It's like having two selves within one body! Reading feels the same way.

And thank god for sleeping pills! I agree with you regarding the numbness....I guess that's just something we'll have to deal with for at least the next year, probably somewhat longer. It is such an awkward and unpleasant sensation, I agree. I hate towel drying my hair after a shower and combing it.....it just feels so odd! I can't figure out what is more annoying….stiff jaw or numbness. I'll lean towards the latter. Do you also get the feeling that your head feels really "heavy" in a funny way?

I get the sense that you also have the feeling (from surgery) that something has slightly "changed" in your mind, and the challenge is to find the best way to adapt as we heal. That's how I think of it. I have come to realize that although the pain we experience slowly improves over time, which is good, one's recognition of certain subtle memory changes as a result of surgery becomes more obvious as well. Recognizing faces (versus recognizing voices) I find a bit more challenging, and it amazes me how things seem to slip out of my mind so quickly. It's like either you know you've forgotten what you just did a few moments ago and try to retrace your steps or you don't even realize at all that you just did A and B. At times I "know" that I'm talking with someone in front of me, but I feel like I'm out of my body in a funny way. Or I'm about to reach into the drawer for a teabag, and then I suddenly don't know what I'm doing there. I can't help thinking about the story you told me with the cheese. Anyway, I'm sure things will improve somewhat for both of us as we adjust to all these changes. I wonder how things will be 6 months down the road. By the way (or perhaps before I forget!), one really great exercise for the mind is playing a memory game just using a bunch of cards (i.e. sets of cards) with images on them, flipped over. All you do is attempt to match the cards. I'm sure you know that trick already! :)

How did your meeting with your epileptologist. go, by the way? I hope things turned out well for you! Where did you have your surgery done? Also, when do you need to go back for post-op testing? Mayo Clinic usually tests after 3 months, which I personally think is a bit early, but oh well. Well, take care, and keep in touch. I've really enjoyed our "chat!" If you prefer, I could give you my e-mail. I hope your shoulder improves! Best of luck with everything!
Cheers,
Kristina

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Hi Kristina:
Sounds as if you're experiencing many of the things that I did. Yes, those first walks were pretty short, but it was nice to be able to get out of the house nonetheless. Actually a lot of my first walks were done around malls because I had my dad with me, and he's not able to walk for great distances. Therefore I could leave him at the coffee shop and wander off to do whatever I wanted/needed to do.
Just thinking about something with regard to the numbness. I was in the drug store one day while I was still pretty bruised and swollen and the pharmacist asked me if I'd be interested in trying a natural product. Figured it couldn't really hurt so I bought a tube of arnica gel (about $15) and rubbed it under my eye to help with the bruising and along the side of my face to try to minimize the numbness. It didn't help completely, but it did help to take a little bit of the edge off.
Meeting with the epileptologist went well. Actually went better than expected. She's talking about the possibility of weaning me off meds after a year. When I met her pre-surgery she said she liked to have her patients stay on meds for two years so it's definitely something to shoot for. As for post-op testing, the only thing they've said they want is an MRI sometime between now and 6 months from now (have to wait for them to set it up). In approximately six months I go back to see the surgeon and the epi so who knows what'll be in store by then.
Shoulder's hanging in. It's not too bad, just annoying, especially at bedtime.
Latest thing for me is I'm having trouble sleeping. Epi suggested that I take two phenobarb at night instead of one in morning and one at night. Worked like a charm the first night, but I've been lucky to get four hours of sleep a night for about ten days to two weeks now.
Hopefully you won't go through that, although someone else mentioned sleep problems to me tonight (well, last night, lol) who also had surgery. Epi suggested that she'd prescribe something for sleeping if it doesn't improve, although I really don't want any more meds in my system if I can avoid it.
If you want, I'll leave my e-mail at the e.com e-mail address and we can correspond like that.
Hope all stays well with you. Hear from you soon I hope,
Lorraine :)

Re: memory problems....HELP!

Hi Kristina:
Just tried leaving you my e-mail address, but found out that you're not accepting e-mails. Could you leave your e-mail on my e.com e-mail and then I'll send mine to you. Thanks.
Lorraine :)

Re: Re: memory problems....HELP!

I find it hard to believe that my memory can get worse than it already is. I was just put on Disability, and brought up the VNS to my Neuro, and he said he was going to schedule my follow up appointments closer together, and if my memory gets any worse, he was going to see if I was a good candidate for VNS. At this point in time, I'm willing to try just about anything.

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