My 9 year old has epilepsy and is going into hospital in a few weeks to be evaluated for surgery

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Stephanie - posted on 05/27/2009

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Lisa,
Hello. My daughter went through the testing and had a left hemispherectomy in October 2007. The posting by Tracy was almost exactly what I would have said myself. We did multiple video EEG's, MRI, PET scans, and CT scans. After all of this testing, we were almost 100% that all the seizure activity was coming from the left hemisphere. The only difference we had, was that one week before surgery, we chose to have a surgery where they went in and removed a piece of Madigan's left scull (bone flap) and had 186 leads placed over the left side of her brain. For one week we did a continuous EEG, which told us exactly where the seizures were coming from. This was not as bad as we thought it would be. She took very little pain medication. After one week they went back in and disconnected the left hemisphere (functional) and removed the temporal lobe. Our daughter came out of surgery and reached for me. She was more alert than prior to surgery and was seizure free. She is still on medication, but we are weaning off of them (from six meds to two) Madigan does not talk much (she didn't before surgery) but is learning new words and can sign. She runs, plays, laughs. I am in a network with other mothers of children who have had brain surgery, and all of them have not experienced the problems that Latrisha has read about. As with any surgery, there is always risks, but we felt to save our daughter it was a risk that we were willing to take.
I hope that this helps a little.
Regards,
Stephanie Feddersen

Tracey - posted on 05/24/2009

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Quoting Latrisha:

I was looking into having surgery for my daughter but I decided not to because of not lasting. They said it can last up to two years and the seizures can start back. So please read up on it before deciding with the surgery. I forgot to mention that they can also come out worse then before by putting them like in a wheel chair , not able to talk, not able to do stuff but set around. So Please read some information about it .



Hi Latrisha,



I'm sorry to hear that surgery is not an option for your daughter at the present time.  But I also want to make sure that everyone else out there who might want to investigate surgery as an option for themselves understands something.  Brain surgery has an 80% long term success rate.  And although it is not the answer for everyone; every single person dealing with a seizure disorder is different.  Therefore eligibility for surgery for each person varies due to their individual situation.  When specialist's determine there is an unusually high risk of a patient's motor skills being severely damaged through surgery then surgery is not usually offered or advised unless there is a potentially life threatening situation; ie brain tumor.  And with any surgery, there are always risks involved.  With brain surgery for seizure disorders there is a chance that a person's condition may worsen instead of improving.  Also some people will have what is referred to as 'trauma' seizures after surgery.  Then once the body has adjusted to the changes after surgery, seizures will minimize and/or stop completely. 



With your daughter; is she young enough that her body still has some growing to do?  This could explain why her seizures might return in a couple of years after brain surgery-along with the location of where the seizures are stemming from.  If you wait a few years, until her body has stabilized physically and the hormones have levelled; hopefully this will be enough to help settle any seizures.  If not, surgery may become a safer option if necessary in the future.



Good luck!



Sincerely,



Tracey Alderson, President of the Board of Directors, Epilepsy Huron-Perth



Administrator, Epilepsy Awareness 2009



 

Tracey - posted on 05/24/2009

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Quoting Latrisha:

I was looking into having surgery for my daughter but I decided not to because of not lasting. They said it can last up to two years and the seizures can start back. So please read up on it before deciding with the surgery. I forgot to mention that they can also come out worse then before by putting them like in a wheel chair , not able to talk, not able to do stuff but set around. So Please read some information about it .



Hi Latrisha,



I'm sorry to hear that surgery is not an option for your daughter at the present time.  But I also want to make sure that everyone else out there who might want to investigate surgery as an option for themselves understands something.  Brain surgery has an 80% long term success rate.  And although it is not the answer for everyone; every single person dealing with a seizure disorder is different.  Therefore eligibility for surgery for each person varies due to their individual situation.  When specialist's determine there is an unusually high risk of a patient's motor skills being severely damaged through surgery then surgery is not usually offered or advised unless there is a potentially life threatening situation; ie brain tumor.  And with any surgery, there are always risks involved.  With brain surgery for seizure disorders there is a chance that a person's condition may worsen instead of improving.  Also some people will have what is referred to as 'trauma' seizures after surgery.  Then once the body has adjusted to the changes after surgery, seizures will minimize and/or stop completely. 



With your daughter; is she young enough that her body still has some growing to do?  This could explain why her seizures might return in a couple of years after brain surgery-along with the location of where the seizures are stemming from.  If you wait a few years, until her body has stabilized physically and the hormones have levelled; hopefully this will be enough to help settle any seizures.  If not, surgery may become a safer option if necessary in the future.



Good luck!



Sincerely,



Tracey Alderson, President of the Board of Directors, Epilepsy Huron-Perth



Administrator, Epilepsy Awareness 2009



 

Latrisha - posted on 05/23/2009

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I was looking into having surgery for my daughter but I decided not to because of not lasting. They said it can last up to two years and the seizures can start back. So please read up on it before deciding with the surgery. I forgot to mention that they can also come out worse then before by putting them like in a wheel chair , not able to talk, not able to do stuff but set around. So Please read some information about it .

Tracey - posted on 05/20/2009

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Hi Lisa,



Since I'm not sure what it is you're asking by this statement I can give you some basics on what to expect. Pre-surgery evaluation for seizure disorders (Epilepsy) consists of patients being monitored through video while in hospital. Patients are hooked up to an electroencephalogram (known as an EEG). Seizures are generally induced by gradually reducing an individual's medication. The EEG is then used to log the brain activity/brain waves/patterns during the seizures. The EEG is kept on for the entire evaluation (24 hours/day), except for things like, showering. Unless there is a recent MRI on file-this will be done to try to determine cause and/or location of where the seizure activity is stemming from in the brain. Doctors take all of the information they gather from a patient's brain activity to determine possible eligibility for surgery. Sometimes causing increased seizure activity isn't that easy and the information needed to determine eligibility can be difficult. If seizure activity isn't increasing then doctors will give the patient the choice of having a procedure using electrodes. This is when 2 small holes are made to insert 2 thin metal rods into the top of the head. As much as this sounds unpleasant, from what I understand it's not a painful procedure. And these rods can help doctors to gain very useful information when other methods aren't working. Since no one can determine how long it will take, all of this evaluation/prep work can take anywhere from a few days to a few weeks.



I hope this has been helpful. Good luck and I hope all goes well!



Sincerely,

Tracey Alderson, President of the Board of Directors, Epilepsy Huron-Perth


Administrator, Epilepsy Awareness 2009

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