Depth electrodes to monitor of seizures deep in the brain

Posted by lsittll @lsittll, Fri, May 22 8:06pm

I have seizures that cannot be seen from a surface EEG. They were sure I had epilepsy when I was diagnosed with it but they couldn’t prove it. I was referred where they surgically implanted depth electrodes into my brain. They drilled holes in my skill and implanted electrodes into the brain. Then they found the seizure focus. The seizures come from deep within the brain. I’ve never known or heard of anyone having this. Has anyone else ever had this done?

Thanks for starting this new discussion, @lsittll. This is very interesting. Is your epilepsy better managed now with the right kind of meds? I'm also wondering how long ago was this procedure was done? I'm guessing that you must have worked with a medical team specializing in epilepsy rather than a general neurologist.

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@hopeful33250 this procedure was done in 1976. It was done after I saw a neurologst at the Children's Hospital of Philadephia in 1967. A neurosurgeon who worked with a doctor specializing in epilepsy at Graduate Hosp. there did the procedure. I have since moved I live in Baltimore and see and epileptologist. She has me on a regimen of lamogrigine, Depakote and zonisamide. That is working better than surgery. I now have one seizure a month and they are all nocturnal.

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@lsittll

@hopeful33250 this procedure was done in 1976. It was done after I saw a neurologst at the Children's Hospital of Philadephia in 1967. A neurosurgeon who worked with a doctor specializing in epilepsy at Graduate Hosp. there did the procedure. I have since moved I live in Baltimore and see and epileptologist. She has me on a regimen of lamogrigine, Depakote and zonisamide. That is working better than surgery. I now have one seizure a month and they are all nocturnal.

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Having one seizure a month must be a real relief. When you say that you have nocturnal seizures, do these happen during sleep or are they just night-time seizures?

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These seizures occur both in my sleep and when I get generally when I get up to do something, i.e. go to the bathroom. It has been over a month since I have had a seizure. Not to be negative but I am waiting for my next one to occur, this is unreal!

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@isittll
Hello Laurie,
I was just wondering if you had discussed with your Epileptologist about the potential risks of
S.U.D.E.P. (Sudden Unexpected Death in Epilepsy) The likelihood of S.U.D.E.P. increases if nocturnal seizures, (which are Tonic-Clonic) are not fully controlled although we'll hope for the best, or are on multiple seizure medications including Lamotrigine and developed the condition at a young age and have had it for a long time. I'd ask your doctor if there is indeed a connection between SUDEP and nocturnal seizures and lamotrigine. Although SUDEP is rare it is obviously very serious and I hope you have a very serious conversation about it if you have’t already.
There is however good news also, frequent
tonic-clonic seizures is the most concerning risk factor and assume you have significantly reduced that particular risk factor.
Try to get plenty of good quality sleep, if you have been able to identify any of your triggers obviously you need to try to avoid those. And I would invest in an anti-suffocation pillow. You might also want to consider a bed alarm or some type of monitoring device in case a spouse or significant other doesn’t wake up during the seizure. It’s an additional safety precaution.
Sorry if I got a bit carried away, I think you may have had it longer than me.
Jake

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Yes.
Our 37 year old son with medication resistant epilepsy had this done.
However the procedure did not go well and the surgeon conducting this caused a brain hemorrhage.

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@fbutterw20

Yes.
Our 37 year old son with medication resistant epilepsy had this done.
However the procedure did not go well and the surgeon conducting this caused a brain hemorrhage.

Jump to this post

@fbutterw20
Hello again,
I was just wondering if your son had this these tonic eye deviation issues prior to the inter-cranial EEG and hemorrhage?
Take care,
Jake

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@jakedduck1

@fbutterw20
Hello again,
I was just wondering if your son had this these tonic eye deviation issues prior to the inter-cranial EEG and hemorrhage?
Take care,
Jake

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Yes he did

Liked by Leonard

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@jakedduck1

@isittll
Hello Laurie,
I was just wondering if you had discussed with your Epileptologist about the potential risks of
S.U.D.E.P. (Sudden Unexpected Death in Epilepsy) The likelihood of S.U.D.E.P. increases if nocturnal seizures, (which are Tonic-Clonic) are not fully controlled although we'll hope for the best, or are on multiple seizure medications including Lamotrigine and developed the condition at a young age and have had it for a long time. I'd ask your doctor if there is indeed a connection between SUDEP and nocturnal seizures and lamotrigine. Although SUDEP is rare it is obviously very serious and I hope you have a very serious conversation about it if you have’t already.
There is however good news also, frequent
tonic-clonic seizures is the most concerning risk factor and assume you have significantly reduced that particular risk factor.
Try to get plenty of good quality sleep, if you have been able to identify any of your triggers obviously you need to try to avoid those. And I would invest in an anti-suffocation pillow. You might also want to consider a bed alarm or some type of monitoring device in case a spouse or significant other doesn’t wake up during the seizure. It’s an additional safety precaution.
Sorry if I got a bit carried away, I think you may have had it longer than me.
Jake

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Dear Jake:
I haven't talked to my doctor about the SUDEP. I haven't seen her probably over a year. She wants to seizure monitoring. I'll have it done in due time. I have had seizures since age 61/2 /53 yr and 6 mo.

Liked by Leonard

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@fbutterw20

Yes.
Our 37 year old son with medication resistant epilepsy had this done.
However the procedure did not go well and the surgeon conducting this caused a brain hemorrhage.

Jump to this post

I'm sorry to hear that the procedure did not go well. Doctors do have the tendency to mess up on surgeries at times. A doctor messed up on the tonsillectomy I had at age 5 He did something with the clamps that cut off the oxygen to my brain. Now I have seizure cause of it.

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@lsittll
I’m curious why you decided to have the intercranial EEG? Was it because you were seriously considering having epilepsy surgery? How many seizures were you having prior to the EEG?
Take care,
Jake

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Our son was on 5 anti seizure meds and still having 1 tonic clonic every 3 weeks or so.
Epileptologist recommenced this as next step to see if surgery an option

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@jakedduck1

@lsittll
I’m curious why you decided to have the intercranial EEG? Was it because you were seriously considering having epilepsy surgery? How many seizures were you having prior to the EEG?
Take care,
Jake

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Hello Jake,

My parents made these decisions for me as I was 17 at the time. The doctor recommended surgery so they went ahead with the recommendations to control the many seizures I was having then. It's been over 40 years since then so I have no idea of how many seizures I was having prior to having the depth electrodes inserted.

You take care too.

Laurie.

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@lsittll

Hello Jake,

My parents made these decisions for me as I was 17 at the time. The doctor recommended surgery so they went ahead with the recommendations to control the many seizures I was having then. It's been over 40 years since then so I have no idea of how many seizures I was having prior to having the depth electrodes inserted.

You take care too.

Laurie.

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Thank you Laurie.
Do you know if they had the nasal electrodes back when you had your intercranial EEG or the type that is put in your cheek? I forgot everything about those days.
Jake

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Hello Jake.

They had those horrible nasal electrodes in those days. I;ll never forget them putting those things in my nose and it feeling like they were going to go to my throat. Yuck! When When seizure monitoring was done at Johns Hopkins about 10 years ago they used those things you put in your cheek, sphenoidal electrodes they said. When my doctor, now at Univ. of Maryland and head of the epilepsy monitoring unit, mentioned seizure monitoring I said because my seizures are so deep in the brain you can only record mine if you use nasal pharyngeal electrodes. She told me they don't use them anymore. They probably use the ones you put in your cheek but she didn't say what they now use. .

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