SEEG memory questions for all

bdhshakes

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Hey everyone,

A few weeks ago I finished up a SEEG session that took forever to actually get my seizures going but we got tons of data (woohoo!). Unfortunately, they ruled me out for a brain resection surgery because my seizures origin point is directly in my speech area and the risk to losing the ability to talk/facial movements is too high in their opinion. The back up plan was supposed to be a RNS but they decided against that as well. So, the final plan is to stick a DBS in me in a few weeks. I'm not terribly optimistic for great results but gotta try and stay positive.

But let's get to the point with my questions. As we all know memory issues are typical directly after seizures, I'm all too used to this. I had so many big seizures my last 3 days of the SEEG that I have no memory of those 3 days. I had family with me that filled in all the gaps for my discussions with my neurologist and surgeon so that's all fine. However, now that i've been home and recovering I still am having memory issues even though i'm currently not having seizures. I'll have several conversations with my wife and the next day start the same conversation but have no memory of us having it the day before. Has anyone experienced anything like this after going through a SEEG procedure, or doing the other mesh version? If I was having seizures I wouldn't be too alarmed by this but it's been very concerning to me as I am now returning to work and worry i'll forget things I've done, or tasks I'll receive from my team. I've reached out to my neurologist and surgeon about this but haven't yet received a response - so still waiting there.

TL;DR - Have any of you had big memory issues, unrelated to seizures, after going through the SEEG or mesh procedures?
 

Nakamova

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I haven’t had the SEEG/mesh procedures, but my cousin who has Parkinson's underwent similar procedures before brain surgery, without any lasting effects on his memory. The "amnesia"-like effects lessened gradually over a few weeks -- hopefully that will be the case for you.

When I've had seizures, two factors affected how soon my memory returned to "normal": The duration of the seizure and my overall health pre- and post- seizures. So if I had a really big seizure when I was already ill or dehydrated or fatigued beforehand, then my body and brain took longer to recover.

Good luck with the DBS, I hope that goes well. I think several CWE members have the DBS, and might be able to offer suggestions and advice.
 

Porkette

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Hi bdshakes,

I had the SEEG before I had the ultrasound surgery done back in 1994. Just like you my Dr. told me it could effect my speech but then
they did a wada test on me to find out what area of my brain I was using the most for short term memory and speech and they found
my speech was split on both sides. If you haven't had a wada test done you may want to look into having one day. It's very simple to
do and the Dr. will be able to pinpoint the area of the brain you are using for speech, memory and much more.

After I had the SEEG I was wiped out for about 1-2 wks. because of all of the seizures plus the surgery itself took a lot out of me
and this could be what's going on with you. If you use a cell phone a lot it has been proven that the cell phone can shrink the
hippocampus of the brain making it harder to remember and the short term memory goes down hill. Also I'm sure you know
that many seizure meds can cause short term memory problems.

I was going to get the DBS surgery done but my surgeon found I had to much damage on both sides of my brain and it
wouldn't work so I am now looking into gamma knife surgery that is very safe to have done the Dr. just using radio waves
to wipe out the damage in the brain triggering seizure and the person goes home the same day as surgery unless they have
gotten to much radiation then they may have to stay over night. I wish you the best of luck and May God Bless You!

Sue
 

HumbleDeer

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When you have the electrodes put in or on your brain for testing, you have surgery. Surgery like that is done under general anesthesia. Any chance you remember from anything else if you're sensitive to medicine induced amnesia like this?
 

bdhshakes

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Just to follow up, ended up getting the DBS put in and now just waiting a few weeks to get it turned on. I feel nervous knowing I’ll be one of just a few of my neurologists patients with both VNS & DBS. I like the aspect of being able to adjust settings at home - under doctors instructions of course. Less doctor visits to pay for.

My memory issues seem to have subsided. My guess is just the amount of anesthesia and seizures I was having - I had had 4 surgeries within 2 months. I’m Hopefully the DBS improves my seizure activity though, but neurologist said it likely won’t be a fix just more improvement, but who knows!

I probed my doctor for more information on why I wasn’t a candidate for the RNS as I was really hoping I could get it. Apparently my seizures are too high of a frequency for the RNS to notice. Which also seems to be why in the past they haven’t been able to get much data through the regular EEG seizure tests cause the EEGs couldn’t pick them up super well either. I had never heard of anything like this before of people’s seizures being on different frequency’s- high or low.
 

Nakamova

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Good luck, I hope it's smooth sailing from here on out.
 

HumbleDeer

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I probed my doctor for more information on why I wasn’t a candidate for the RNS as I was really hoping I could get it. Apparently my seizures are too high of a frequency for the RNS to notice. Which also seems to be why in the past they haven’t been able to get much data through the regular EEG seizure tests cause the EEGs couldn’t pick them up super well either. I had never heard of anything like this before of people’s seizures being on different frequency’s- high or low.
the RNS uses a somewhat (or almost completely) different mechanism of working. Chances are if it were to work for you, you'd be in for battery replacement surgery more than once a year. the RNS works well for collateral seizures, meaning one seizure sets off the trigger for the next. If you have a lot of seizures that are 'standalone' (not triggered by an earlier seizure) then it has to work much harder, potentially causing more side effects too. But side effects are probably the least of your worry at that point. :p
 
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