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Post Surgery Questions
Tue, 05/13/2008 - 15:44I am new to this website and this is my first post. My12 year old son had an anatomical hemispherctomy April 16 2008 for his partial complex seiuzures which he had had for 7 years. He was born with cebral palsy, he had a stroke in utero and 2/3 of his right brain was damaged. Which is why he was a suitable candidate for the hemispherectmy (where they completely remove the affected side). Before surgery he had about 10 seizures everyday, sometimes clustering with more than 20 seizures per cluster. His seizures were always triggered by a startling loud noise. I think they call this startle epilepsy. And these seizures were during the day.
It has been nearly one month since surgery and he is still seizing. What is strange is the seizures are no longer triggered by a startle and he has been only seizing at night. Has anyone else seen a change in seizure type after surgery? The doctors tell me this can happen, surgery can change epilepsy, but they do not know why. Also, they say this can be a "mirror focus" - basically the good side has learned how seize on its own. Anyone have any experience with this? They say it could settle down, we need to wait 6 months before we can get a baseline of seizures, since the brain is still healing. Has anyone else had seizures after surgery and then seen a reduction as the brain healed?
I belong to a hemispherctomy support group on yahoo, but the majority of the members are seizure free after surgery, so they cannot completely relate, which is why I have branched out for more support.
Also, anyone with any information on dealing with nocturnal seizures would be greatly appreciated. My son seizes 20+ times every night - within minutes after falling asleep. Currently we are trying to treat these with benzodiazapemes, which are not working.
Comments
Re: Post Surgery Questions
Submitted by Marcia M on Wed, 2008-05-14 - 11:56
Hello Heather,
Thank you for the reply. Yes my son's seizures do occur just as he is falling asleep, with 5-10 minutes of laying his head on the pillow. After he has the first one, he will continue to have very brief seizures (5-10 seconds each) in incriments of 7-20 minutes. So right after falling alseep, he has a 10 second seizure and goes back to sleep. 7 mintues later (to the exact) he will have another, then another 7 minutes another seizure, after his first 3 seizures, I can see they get shorter (5 seconds) and farther apart (10 minutes). After about an hour or two, they subside until right before waking - he always wakes up in the morning with one seizure. If the seizures are ever very close, say 2-4 minutes apart and there is no sign of them stopping, I give rectal Diastat (these nights are very frightening). The doctors have not confirmed this, but I have read that slower brain waves during nonREM sleep can make it ideal for seizures to occur. What makes it frustrating is when Austin wakes up between seizures and we have to start the cycle all over again - some nights it can take until 2a.m. for the seizures to subside. It seems like the seizures need 1-2 hours of constant sleep before they stop. I am very thankful the seizures are only occuring at night. I too hope and pray we see more improvement.
You said you had seizures the first 6 months after your surgery and seizure-free from 6 months to 1 year. Are you currently seizure-free? During the first 6 months did your doctors explain why you were still experiencing seizures, did they say the brain needs to heal? They told me they could be occuring for two different reasons, a mirror focus (which they think will gradually calm down once the brain heals) or a missed focus (not a good thing since they cannot operate anymore). They just said give it 6 months and we will know our answer. Seizure focus could not be pinpointed on the EEG after surgery - so they cannot say for sure if it were a missed focus on the non operated side, or a mirror focus.
Thanks again Heather for the reply, it was nice hearing from you. Take care.
Marcia
Hello Heather,
Thank you for the reply. Yes my son's seizures do occur just as he is falling asleep, with 5-10 minutes of laying his head on the pillow. After he has the first one, he will continue to have very brief seizures (5-10 seconds each) in incriments of 7-20 minutes. So right after falling alseep, he has a 10 second seizure and goes back to sleep. 7 mintues later (to the exact) he will have another, then another 7 minutes another seizure, after his first 3 seizures, I can see they get shorter (5 seconds) and farther apart (10 minutes). After about an hour or two, they subside until right before waking - he always wakes up in the morning with one seizure. If the seizures are ever very close, say 2-4 minutes apart and there is no sign of them stopping, I give rectal Diastat (these nights are very frightening). The doctors have not confirmed this, but I have read that slower brain waves during nonREM sleep can make it ideal for seizures to occur. What makes it frustrating is when Austin wakes up between seizures and we have to start the cycle all over again - some nights it can take until 2a.m. for the seizures to subside. It seems like the seizures need 1-2 hours of constant sleep before they stop. I am very thankful the seizures are only occuring at night. I too hope and pray we see more improvement.
You said you had seizures the first 6 months after your surgery and seizure-free from 6 months to 1 year. Are you currently seizure-free? During the first 6 months did your doctors explain why you were still experiencing seizures, did they say the brain needs to heal? They told me they could be occuring for two different reasons, a mirror focus (which they think will gradually calm down once the brain heals) or a missed focus (not a good thing since they cannot operate anymore). They just said give it 6 months and we will know our answer. Seizure focus could not be pinpointed on the EEG after surgery - so they cannot say for sure if it were a missed focus on the non operated side, or a mirror focus.
Thanks again Heather for the reply, it was nice hearing from you. Take care.
Marcia
Re: Post Surgery Questions
Submitted by mommy2kyra on Wed, 2008-05-14 - 23:28
Hello Marcia,
I'm sorry that the seizures wake Austin. In my case, I was always told that just a few minutes after turning the light out, I would sit up and say, "Oh my God! Shhhhh! Shut up! Shut up!". I would then be quiet for a second, and lay back down. I was knocked out. That was the way it worked for me 9/10 times. I have occasionally had them in the morning, if I get into a lighter sleep. I recall that when a person is sleep-deprived, the first few of stages of sleep are skipped. Several medications cause a deeper sleep- skipping REM, which is why we're always tired. So, because we are perpetually sleep-deprived, we lay down and jump right into stage 3 or 4. This is a vulnerable period, and I just can't remember why. I do know that some people take a little more medication at night, to provide more protection. Perhaps that is an option for Austin?
The doctors said that it takes at least 6 months to a year for the swelling of the brain to ease. The swelling caused by the invasiveness of the surgery. So, they told me that it was not unusual to have seizures through this period. Of course, they love to hear that the patient is seizure-free though! I would think that they're just trying to prepare you for the possible negative--rather than focus on possible positives & be discouraged if the surgery wasn't a success. Neither possibility they gave is very encouraging. ((hugs)) to you and Austin!
I was seizure-free for 6 months, yes. I slipped on the ice 3/07, and fell onto my head. Traumatic brain injury occured, as the impact (on the left side) caused the plate covering the area operated upon to shift & small intracranial hemorrhage. My seizures came back- requiring meds to be doubled, and I have breakthrough seizures. The seizures aren't as bad or frequent as before. They are different. Either way, it stinks! LOL
No problem writing back, Marcia :) I hope that this has been helpful for you. Take care!
~Heather~
*refractory seizure surgery on left temporal lobe 03/06*
Hello Marcia,
I'm sorry that the seizures wake Austin. In my case, I was always told that just a few minutes after turning the light out, I would sit up and say, "Oh my God! Shhhhh! Shut up! Shut up!". I would then be quiet for a second, and lay back down. I was knocked out. That was the way it worked for me 9/10 times. I have occasionally had them in the morning, if I get into a lighter sleep. I recall that when a person is sleep-deprived, the first few of stages of sleep are skipped. Several medications cause a deeper sleep- skipping REM, which is why we're always tired. So, because we are perpetually sleep-deprived, we lay down and jump right into stage 3 or 4. This is a vulnerable period, and I just can't remember why. I do know that some people take a little more medication at night, to provide more protection. Perhaps that is an option for Austin?
The doctors said that it takes at least 6 months to a year for the swelling of the brain to ease. The swelling caused by the invasiveness of the surgery. So, they told me that it was not unusual to have seizures through this period. Of course, they love to hear that the patient is seizure-free though! I would think that they're just trying to prepare you for the possible negative--rather than focus on possible positives & be discouraged if the surgery wasn't a success. Neither possibility they gave is very encouraging. ((hugs)) to you and Austin!
I was seizure-free for 6 months, yes. I slipped on the ice 3/07, and fell onto my head. Traumatic brain injury occured, as the impact (on the left side) caused the plate covering the area operated upon to shift & small intracranial hemorrhage. My seizures came back- requiring meds to be doubled, and I have breakthrough seizures. The seizures aren't as bad or frequent as before. They are different. Either way, it stinks! LOL
No problem writing back, Marcia :) I hope that this has been helpful for you. Take care!
~Heather~
*refractory seizure surgery on left temporal lobe 03/06*
Re: Post Surgery Questions
Submitted by mommy2kyra on Tue, 2008-05-13 - 23:00
My surgery was much less intense than your son's. However, I did continue to have small seizures (simple partials & a c.p. here or there) for about 6 months post-surgery.
I was seizure-free from 6 months to 1 year. Your son is still in a very early phase of recovery. I don't know if the cerebral palsy will slow his recovery, but I would think it might. My first 3 months of recovery were extremely difficult (physically & emotionally). So, it's understandable that seizures are occurring.
Are your son's seizures ocurring only just as he's falling asleep? If so, that's very common. That's also already an improvement - it sounds encouraging :) I hope that everything continues to improve for your son. (((hugs))) to you! I do manage a group here called Struggling after Surgery. If you ever need to talk, and gain understanding & support, we are there to help.
~Heather~
*refractory seizure surgery on left temporal lobe 03/06*
My surgery was much less intense than your son's. However, I did continue to have small seizures (simple partials & a c.p. here or there) for about 6 months post-surgery.
I was seizure-free from 6 months to 1 year. Your son is still in a very early phase of recovery. I don't know if the cerebral palsy will slow his recovery, but I would think it might. My first 3 months of recovery were extremely difficult (physically & emotionally). So, it's understandable that seizures are occurring.
Are your son's seizures ocurring only just as he's falling asleep? If so, that's very common. That's also already an improvement - it sounds encouraging :) I hope that everything continues to improve for your son. (((hugs))) to you! I do manage a group here called Struggling after Surgery. If you ever need to talk, and gain understanding & support, we are there to help.
~Heather~
*refractory seizure surgery on left temporal lobe 03/06*