Surgery where electrodes are placed on brain...

[execwife2002]

In the Cincinnati, Ohio Enquirer there was an article about a 9 yr. old girl who had surgery where they placed electrodes on her brain, then decreased her meds and over a few days a seizure occured and they were able to locate the focal point of her seizures. Has anyone ever had this surgery or knows anything about it? When we asked our Dr. he said it was an option but very risky.
Marian

[brain]

Yes, this has been a practice. Electrodes,
also know as "grids" being placed on the
head is of risk: of infections, complications,
injuries, etc. But when you have a child
or adult that is seizing and every option
is failing, sometimes there is no other
option available, and one has to take an
extreme measure to locate where the
seizure or seizures or originating from and
then determine or proceed if surgery can
be performed to REDUCE or MINIMIZE the
surgery.

Such are performed at Level 4 Epilepsy
Hospitals where the staff and Epileptologist
are there 24 hours a day and are monitored
constantly at all times.

Every brain surgery, even a Wada test,
any surgery, comes with risks - even taking
anti-epileptic drug comes with risks.

[execwife2002]

Thanks brain,
I did speak with a friend of mine who is with North Western University. He is going to speak to some of his collegues to research more info. for us.

[brain]

Have the Doctor
and the Colleagues
access these sites:

http://www.aesnet.org/index.cfm

http://www.aan.com/go/practice/guidelines

[Zoe]

Hi Marian,
That's what they did for my seizure surgery in 1988. It was still considered experimental then and I had to be awake for the nine hour surgery while they stuck needles into my brain trying to make a seizure happen.

[BIGMAN131307]

It's a common way to help make a more pin-point map of where the seizures occur. The doctors don't do this procedure unless you are a candidate for surgery. This procedure is done
when they can't localize your seizures using the other testing methods. When this is done the patient is awake so the doctors can talk with the patient at all times. After the seizure location(s) are found the main surgery begins if it is found in a safe place.

[execwife2002]

My son is most likely going to Cincinnati,Ohio to Children't Hospital for a series of tests in December. My husband , daughter and i will be going as well. We are from that area and have family to stay with. He's going through the same series of tests that he had a year and a half ago but in a diff. hospital through a diff. dr. Nov we see his dr. and will let him know we're going for a second opinion. Hope the Dr. is OK with it.
Marian

[Tate]

Hi Marian

My name is Tate I am 29 years old and Live in Australia..... I have only been home for for a few weeks after what u have described seems to be the same operation..... I had a 2 step proceedure..... the 1st step I was cut behind the ears from one side to the other.. opened the skull place grid electrobes on the surface of my brain..... took me off all my medication and promoted seizures for a week, from which they produced a map, they also stimulated the electrobes to define what function was in what part of the brain such as speech, movements, memory and vision.... I had a numerous amount of tests to show where those things were located but the stimulation of the electrobes is so accurate... I had a week of having the electrobes in and information recorded, the one week later I went back into surgery, where the performed a resection removing part of the right frontal lobe and part of the frontal lobe..... I have been told the area mass they removed is the size of 3 match boxes..

I found the operation easier then I had expected..... It wasnt the best weeks of my life but I am sure there will be harder..... It was no where as stressfull either.... my father who is a big big softy even found it easier to watch me go through then he thought...

and he is one soft teddy weddy bear!!

the last operation I had was the 19th, so only 3 weeks ago..... I still have to take it really easy and will have to for a while but am feeling quite good for what I had done....

I just have to make sure I get pleanty of sleep dont over do it..... bending down I still get dizzy but that is easing off alot... the headaches are no worse then a normal head ache and I am not taking any prescribed painkillers for them just mild ones such as panadol and or nurofen...

Your son and your family will be in my thoughts....
Trust in your doctors they are able to do the most amazing things now and are brilliant at what they do...

I havnt had a seizure since my op.... which is so great and a weird thing at the same time but a really great weird..... I guess in a way I am used to having them so much that it feels weird not to be having them sort of like well it must be this morning or it must be after lunch... but its such a good feeling not having them after I was scared that I would have them worse after then I did b4.... but so far none not even a aura..... WOW i reakon

If I was back when the doctors asked me if I wanted to go through the operation knowing what I know now.... I would do it again no problems with no hesitations... I am really glad I did it...

I look forward to hearing about your journey.... As I am sure it will be positive all the way!!!! and the result will be so worth it.....

Take care.... Stay positive!!!

[Bernard]

My son is most likely going to Cincinnati,Ohio to Children't Hospital for a series of tests in December.

[Nancy]

Hi Tate - it's wonderful to have you back and hear how well things went !!

[Tate]

In the Cincinnati, Ohio Enquirer there was an article about a 9 yr. old girl who had surgery where they placed electrodes on her brain, then decreased her meds and over a few days a seizure occured and they were able to locate the focal point of her seizures. Has anyone ever had this surgery or knows anything about it? When we asked our Dr. he said it was an option but very risky.
Marian

Hi Execwife......

I think I spoke to you in a thread about my surgery...
I underwent what soundslike something similar or even the same as what your looking into for your son. I had my first operation on the 12th Nov which is where they placed grid electrobes on the surface of my brain, I then went up to the video monitoring ward where I was on 24 hour eeg and was monitored, I was taken off all my meds to promote seizures so they could be recorded, this went for a week, the following monday being the 19th Nov I was taken back to the operating theatre, where the grids were removed in the resection to remove part of my frontal and part of my right frontal lobes. The surgeon said I had the size of 3 match boxes removed....

It was 4 weeks ago yesterday.... And I am travelling well..... I havnt had a seizure yet so.... At the moment its all very positive and so far a success... going a month with no seizures is a success in my case in its self!!!!!!!!!!!! So I am so so so so so so so so happy so far!!!!!!!!!!!!!!!!!!

Keep patient..... make sure your happy and at peace with the information that is provided for you....Or ask for more.... there is no such thing as a silly question... just being silly for not asking... and if your not happy with the answer just ask again... because when it comes to decision time you want to be as well informed as possible....

So far there is no way i would take back my decision to have gone through the surgery..... plus I thought it was going to much harder then it was..... I think I told myself it was going to be much more harder.... So I was pleasantly suprised when it wasn't as bad as I had thought... I had some bad stages as It is to be expected but. I am still needing to take it really really easy.... still have to be aware when I am bending as if I bend to quickly you can become dizzy.... everyone gets different severities of that... I havnt been very bad right from the start. but I make sure just to be aware....

there was a young girl come in to have the same op as me 2 days before I went home... I have been talking to her mum and she is doing very well too!!

I hope all the testing goes well.... Its a drag sometimes but the more information the better the outcome will be for you son... so its all worth it in the end...!!!!

I will be thinking of you your family and especially your son!!!!!


Take care
Happy positive thoughts
Tate xx

[haird18]

This something my neurologist has thought about doing to me!! But my neurologist is very concernedabout me with having aright side of brain smaller than left and complications of cerebral palsy. A this point he was thinking my seizures were coming from the occiptal lobe and not having aright temporal lobe so he's not sure where my seizures are coming from now. So the next step is putting eletrodes on my brain.This no big deal for me with all the major sugeries or testing I 've gone through.

[stilldancing_98]

I had it done 6 years ago. In Seattle WA at Harborview Med center.They found my focal point. They also did angio gram with watta to see where my memory and everything was at and did a lobectomy.

[Duvexy]

I would like to be able to get something down to help alleviate my seizures seeing that I have had them for 40 years. I do not have alot of money to get surgery or electrodes on my brain so that there can be progress in figuring out why I have seiuzres. I have moved around my life so long every I move I get new doctors and start all over again. I sure also wish I had alot money too because I am sure they want to get paid which is why I don't consider them.

[stilldancing_98]

In my epilepsy center where my docs and the surgeons are they also have counselors that help put you on funds that will cover your surgeries and what ever else you need. So if this is something that you decide to do with your dr. talk to him about that also. It should be part of the whole decision. Teresa

[kelso54]

I am 54yo and had this done about 6 years ago. Any surgery comes with risks. This was a monitored eeg and I suspect the same sort of thing; withdrawal from meds to alow seizures was done with electrods out side of head first. It is a miserable thing to go through, especialy when they place the electrodes on the brain. Yo have this bundle of wires coming out of your head, you can not get out of bed, the blue sheets and plastic matres are uncomfortable and camera pointed at you doesn't help. For her sake I hop this 9yo had her seizures with out going through sleep deprivation! Just try to stay awak for 36+ hours laying in bed!! With competent doctors and staff this is not as dangerous as it sounds and can tell the doctor much. I hope this little girl's doctor found her seizure focus and it was in a location where something can be done for her.

[janie30066]

Hi.
I have had the process you mentioned. I have had epilepsy since I can remember. No single or multiple medication helped stop the seizures. I did the long term monitoring where a grid is placed on your brain to locate where the seizure focal point is. During this I was hooked up and my brain activities were recorded 24 hrs a day, every day. Found out that where the seizures where coming from was too close to other functions and my neurosurgeon would not do the surgery. However, I am now part of a study in which I have a device implanted in my brain. It is almost like a heart pacemaker but for the brain. This device has been a miracle for me. I have no seizures since the device has been turned on. I will be able to drive soon and everything I went through was worth it.