Lack of Focus

[dejavudu]

How punny.

More seriously, has anyone here gone into surgery without knowing exactly where their seizures are coming from? I've been going through testing and monitoring for several years now, and while my video EEGs show consistent evidence of seizure activity in my left temporal lobe, all of my imaging studies look normal.

I'm apparently a rare case. Yet even as my chance of success keeps dropping (we're down from 90% to 30%), I keep hearing that my seizures need to be controlled before I have the one that ruins my life. Sure. I get that.

I'm scheduled to go in for surgery in late September. I'll have subdural strips and grids attached and I'll be monitored for seizures. I'll get mapped. But if they find the focus and can safely remove it, I'll need to make a decision about whether to proceed practically overnight. I expressed this concern to the team as well as the neurosurgeon. They all told me it would be best if I went in with my mind made up. I just don't understand how I'm supposed to decide when the seizures could be coming from anywhere in my left temporal lobe, possibly even my left frontal lobe or right temporal lobe. I imagine removing tissue from each of those would have different consequences.

I'm trying to compile a list of questions for the neurosurgeon. Meanwhile, I'm strongly considering backing out now that the day is getting closer and closer. (Is this see-sawing normal?)

Three days ago, I had nine seizures and three auras. (Before that, I went about two weeks without anything.) I slept through the following day. I've been having auras since. I've been trying to ask myself if this is something I can deal with the rest of my life. I understand the seizures are dangerous, so this might sound a little odd. I've been trying to explain that the seizures themselves aren't such a bad experience as the memory issues, the decline in functioning, the social problems, and all the other stuff that comes along after them. Here's the kicker. The surgery could stop the seizures and therefore remove some of the danger, but it could also make some of the problems I want to fix worse. Permanently. Pardon the outburst, but seriously, WTF?!

Going out of my mind, here.

 

[C0urt]

yup, makes sense. I don't want them digging around with a spoon and pull out something important, like how to spell chicken, that took me forever to learn.

 

[dejavudu]

Wow, and I thought we had some bad hospitals. Genuinely sorry to hear about your difficulties! Nonetheless, thank you for such a thoughtful reply!

 

[QueenieKP]

It's just not realistic to ask you to make a choice on the spot without being given the opportunity to weigh up the pro's and cons.

Q

 

[dejavudu]

I agree. I think they're seeing the time I have between now and the surgery as time to weigh those pros and cons, though. I do know some of them. It's just that, because we thought my seizures were coming from my left temporal lobe and now we're not as certain, I'm not sure what happens specific to the other areas. I understand the point of functional mapping is to figure some of that out, but this still seems crazy to me.

I'm still working on my list of questions for the neurosurgeon.

Maybe a better way to approach the problem here would be to ask if anyone's had experience with surgery in the left frontal lobe, right temporal lobe, or dominant-side hippocampus? I'd love to hear from anyone, but I'd especially be interested in hearing from anyone who has gone through all of this (or decided not to!) with normal results from imaging studies. That's what's making this so challenging.

 

[C0urt]

 

[dejavudu]

C0urt, are you trying to be callous or funny? I'm freaking out enough and don't appreciate this.

 

[Cint]

dejuvu,

I had a left temporal lobectomy done back in 1990. In order for them to exactly pinpoint where the seizures were coming from, I had to undergo a series testing like you're talking about. I had the subdural testing with the strip electrodes. With that, I was in the hospital for a week so they could monitor the seizures and where the originated. That is what this testing is for. So they can see where the seizures are coming from. And the I had the WADA test done a month later. After that, then you can make a more informed decision.

Check out these websites for more info:

http://www.epilepsy.com/epilepsy/surgery_brainmap
http://www.epilepsy.com/epilepsy/surgery_wada
http://www.epilepsy.com/epilepsy/surgery_results

My surgery didn't work for me, but I've heard it has improved over the years. And it was done on the left side, the memory & speech part of the brain. To this day I experience memory loss and aphasia (difficulty finding words while speaking to folks).
Depending on which side of the brain the surgery is on, there will be some side effects.

Good luck!

 

[dejavudu]

Thanks, Cint. I'm going to read over those articles now.

I had a WADA a little while ago. I have mixed dominance for both memory and language. I guess they were hoping the surgery wouldn't affect me too much or that the "other half" would pick up the responsibilities. My fMRI showed language dominance on the left, though.

The doctors want me to go in with a decision so they don't need to risk another operation. Maybe once I have an idea what each lobe does, I can make a better decision.

I'm sorry to hear your surgery didn't work. I've seen some of your posts and you write well. Is it just speaking that's difficult for you? (I know writing affords me more time when I'm having trouble finding words. Or I'll have the chance to proofread. I don't think I've ever swapped words in writing like I do sometimes when I'm speaking, though. Thank goodness. That can be embarrassing.) Is it something that's with you all the time or does it come and go?

If I ask too many questions, please don't hesitate to tell me. I don't want to make anyone uncomfortable or seem like I'm prying.

Thanks for your reply.

 

[k35k35k35]

I had surgery in 1985 when it was still in the research stage and they removed my right temporal lobe. It did decrease the amount of seizures I had but it also had a dramatic impact on my memory. My grandmother will still ask from time to time.. do you remember that vacation we took to blah, blah, blah and I tell her nooooo, well I thought you would never forget that. But anyway, that and the fact that I still had siezures afterward albeit fewer is the only thing I have against it. But when you think about it, if you continue to have siezures and take aed's, your memory is gonna get fried anyway and if it can lessen your seizures why not do it? BTW, it did mess up my memory but did not affect my IQ.

 

[C0urt]

Sorry dear, trying to remind you that you are not alone and that several of us have had to make the same same choice, and that's what it felt like.

and that you have two options, laugh or cry, and that laughing is much easier.

 

[2ndchances]

I've had my right temporal lobe resected twice. First was in 2001, where they removed most of the right hippocampus, which controlled my seizures perfectly until May 2012, when they reared their ugly head again. I had the hippocampus fully resected on April 29th, along with the anterior right temporal lobe, and am now 118 days seizure free... freedom from the 5-10 seizures/day + auras that I was having prior.

I do have some difficulty with memory, I've lost a small portion of my top left peripheral vision, and have been told that I have gaps in my speech that I fill in with "Ummm", or "like"... My surgeon asked if I was forgetting words and such, which I'm not. He's thankful as that's dominant on the left side of the brain, which he didn't touch... but I think it's because I have much more difficulty staying focused. I think the gaps are when I'm trying to redirect my focus. He feels that it's transient in nature, and that we'll be able to measure my recovery better 6-12 months post surgery.

Today is my first day back to working full-time since surgery! :tup: I have a much higher quality of life (before surgery it was zero!) now, and can live with memory and focus issues... I'm just learning to do things differently (using lists, reminders, sticky notes, whatever I might need!)

All the best to you, I hope you find peace with making a decision... I know that can be hard! Be sure to keep us posted!

 

[Razman]

I am sure that you have concerns and I know that I did when I had left temporal lobectomy back in 1984. But with me it was 100% and I have not seen a doctor since. So , yes there are concerns but you will never know unless you do it. Yes I have memory problems but I found a way to accept it. Didn't loose sleep over it and just went on. I wish the best of luck.

 

[Cint]

I'm sorry to hear your surgery didn't work. I've seen some of your posts and you write well. Is it just speaking that's difficult for you? (I know writing affords me more time when I'm having trouble finding words. Or I'll have the chance to proofread. I don't think I've ever swapped words in writing like I do sometimes when I'm speaking, though. Thank goodness. That can be embarrassing.) Is it something that's with you all the time or does it come and go?

If I ask too many questions, please don't hesitate to tell me. I don't want to make anyone uncomfortable or seem like I'm prying.

I'm also somewhat dyslexia and I use spell check when on the computer. Often times I leave out words, too. When speaking with friends and family I can say things like, "you know the thing that turns the TV on, " when I may forget the name of a remote control. Some days it is worse than others.

The damaged area is my hippocampus, deep in my left hippocampal area on the left side. They could not go in and do another surgery on me because that area is the speech and memory area. The surgeon said that he was afraid if he operated, I would end up like an end stage Alzheimer's patient. I said no thanks to that.

 

[dejavudu]

C0urt, thanks for clarifying. There is a lot related to the epilepsy I'm able to laugh at. I'm sure everyone here is familiar with the horrified expression an "outsider" will give you upon overhearing one of your epilepsy-related jokes. That's not how I mean to come across. It's just that right now, this isn't something I can laugh at. Yet. Hopefully, someday I'll be able to, but not yet. Right now, I'm still too afraid.

 

[dejavudu]

I read over those articles. They did help answer a few of the questions I had. My mum brought a magazine from the neurology clinic yesterday that has an article about the surgery in it. I'm hoping to take some time to read over that later tonight. Right now, I'm finalizing my questions for the neurosurgeon so I can get those in to him.

It seems like the memory issues we're talking about aren't much different from those I'm already dealing with. They're worse around the time of a seizure, of course. But knowing things like it doesn't affect your IQ and that you can cope with lists and sticky notes and the like...well...that definitely sounds more hopeful than "the consequences are unpredictable." Thank you all.

I think what concerns me about memory is wondering how well I'll be able to learn, wondering how strong my working memory will be, and wondering what type of memory I'll lose. I'm still in school and carrying on with a 4.0. I'm not so competitive, but having a GPA like that does make it easier to get into better colleges, especially when you've got some covert discrimination to deal with. The careers I'm interested in probably require a good working memory. Finally, I'm also dealing with post-traumatic stress. I dread being stuck with nothing but those flashbacks and the issues which brought them on. And if my mood will be impacted...whoa...

k35k35k35, I can't remember vacations at all! I keep promising myself I'll keep better journals, but then the stuff I write ends up being so vague or trivial that it makes no sense without some kind of anchor anyway. You're right, my memory is already simmering. I've been weighing a gradual and transient decline against an immediate and permanent decline and just haven't found my answer, yet. Talking definitely helps, though. Thank you!

2ndchances, congrats on your first day back! I met a guy who had gaps in his speech something like what you're describing. Brilliant man. He was only two weeks out of the procedure, but said he felt great apart from that issue. I found out it cleared up. And he's been seizure-free since. Thanks for your post. It's a huge help hearing from people who have or who are going through this.

Razman, if you don't mind my asking, how would you describe the memory problems you're having?

Cint, thanks. You know, that would have been a big no thanks for me, too. But I'm glad you're finding ways and I'm really grateful to hear from you.

I guess one of the other things I'm wondering now is how severe is severe enough to warrant going through with this? Pulling out my seizure log for the last week, here's what it looks like. I had 8 partials and 3 auras on the 14th. Repetitive vague auras through the 15th-17th. An aura on the 18th. 2 auras yesterday. 4 auras so far today. The first two weeks of the month were entirely clear. I can see how the partials are a significant danger. Among the other symptoms, my heart rate shoots up, everything around me ceases to exist, and sometimes it's hard to breathe because I can't stop swallowing. I can see how the auras might be dangerous. I've done silly things like wandering around and tripping over things and falling on me bum. Recently, I pulled a plate from the cabinet when I meant to grab a colander (from an entirely different cabinet) and splashed boiling water onto myself. I got lost on a walk only to find out I was a block away from my home. I spent about an hour (I think?) this morning pacing up and down my back yard and forgot I was outside. Most of the time, though, the auras are just a quick sensation of deja vu, maybe a little rising sensation in my stomach. I might feel a little out of it. It just means I need to expect a "real" seizure sometime soon. I've had only three times (I'm aware of) when my seizures generalized. I'm pretty sure if I was experiencing that on a more regular basis, my decision would be made.

Reading over that last paragraph again, I can see how ridiculous I sound. But I'm going to leave it. This is how wishy-washy I'm feeling.

Who knows? Maybe if getting this out helps me reach a decision, it'll help someone else later.

 

[k35k35k35]

Well as far as the memory goes, after my surgery I had a harder time with short term memory. When I trained as a produce manager, I wrote down everything I needed to know in a journal so that anytime I needed to make an order, do an inventory, or perform a function in the rs gun i could go to my journal and know what to do. And even though I did these things for about 10 years, I still could not remember day to day exactly what I needed to do. But because I kept a journal, I was able to get by. But I think you will see those problems whether you have surgery or not. Most of the people I see on here have the same problem's even if they have not had the surgery. In the past 10 years, I don't think my memory has gotten worse, it just sucked 10 years ago. Best of luck to you.

 

[dejavudu]

Thanks for the kind wishes.

This anxiety is killing me. I thought maybe it would be better to focus on one step at a time and worry about the grids before anything else. Well, worrying is what I'm doing. At first, I figured it wouldn't be as hard to think about as the resection. Then I reread the protocol and let some of the numbers sink in. 30% of the people who do this end up with a subdural hematoma. 10% experience permanent damage such as paralysis, blindness, language deficit, etc. I understand they need to share all the gory details. I'm glad they do. But 1 in 10? Really?

It seems almost like the risks and benefits are the same whether I go through with this or not. Just with one choice, some might be delayed and with the other choice, more immediate.

 

[k35k35k35]

epilepsy surgery

The question is, how do you like your life with seizures? you are having them about the way I did as a teenager and while I was not happy with all the results of the surgery, I do believe it made life more tolerable for me. Thing is, if you do not have the surgery you already know what life is gonna be like( no driving, not much in the way of socializing, feeling wore out all of the time), but if you do have it you may get your seizures under control and the side effects may not be as bad as having to go through life with all the seizures. I know that what they list and the percentages therein sound bad, but I currently have mine only when I don't follow the rules( eat right, take med's, get sleep, no drinking etc.etc.) Like I said before, the memory is an issue, but I don't know that it would have been any better if I had not had surgery. But whatever your decision, I wish you the best.

 

[dejavudu]

I'm lost. I actually called to cancel the surgery yesterday, but now I'm having doubts about that. Ugh.