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Temporal lobe surgery
Tue, 07/28/2009 - 03:05Hello to everyone who lives with and loves a person with uncontrolled epilepsy.
My beautiful 9 year old daughter is due to have surgery on the 29th of Sept 2009. Whilst we are excitied about the prospect of, 70% chance of becoming seizure free - we are concerned about the issue of stroke associated with the surgery.
Has anyone experienced negative effects of the surgery?
Concerned mother. Regards, Anne-Marie
Comments
Re: Temporal lobe surgery
Submitted by stephanieev on Fri, 2011-02-18 - 17:29
susi,
Would love some input on your situation. What kind of tumor did you have? Did you take meds for your seizures? if so how long for? Happy to see the great outcome for you. That is awesome!
My husband Bryan was diagnosed with a Ganglioglioma Tumor two months ago. He is choosing to remove the tumor in the left Temporal Lobe and is scheduled for the 8th of March for a Awake Brain Surgery. Hoping he will also be seizure free and will not have to take meds. He has had his seizures for 20 years and NEVER been on medication until this month. They are really making him have lots of icky symtoms. He has tried the Lamotrigine and the Zonegran so far. Doc says he wants my husband to be on something during his surgery so he is going to try a different med. very frustrating. He only has the Partial Complex Seizures. He cannot communicate or understand language for a couple of minutes and gets tired after. He is fully aware and consious when having one.
Any pointers or questions we should ask the suergon or your Neurologist are appreciated. Medicine advice and your experiences are useful. Advice on surgery and post op and pre op are also needed. I want to be prepared for my hubby. I am the research nut as I learned to be 14 years ago as my son has a rare form of Muscular Dystrophy. I do all the medical research and only looking out for the best interest of my husband and our family.
Thank you so much for your help and support through this difficult time
Stephanie V
susi,
Would love some input on your situation. What kind of tumor did you have? Did you take meds for your seizures? if so how long for? Happy to see the great outcome for you. That is awesome!
My husband Bryan was diagnosed with a Ganglioglioma Tumor two months ago. He is choosing to remove the tumor in the left Temporal Lobe and is scheduled for the 8th of March for a Awake Brain Surgery. Hoping he will also be seizure free and will not have to take meds. He has had his seizures for 20 years and NEVER been on medication until this month. They are really making him have lots of icky symtoms. He has tried the Lamotrigine and the Zonegran so far. Doc says he wants my husband to be on something during his surgery so he is going to try a different med. very frustrating. He only has the Partial Complex Seizures. He cannot communicate or understand language for a couple of minutes and gets tired after. He is fully aware and consious when having one.
Any pointers or questions we should ask the suergon or your Neurologist are appreciated. Medicine advice and your experiences are useful. Advice on surgery and post op and pre op are also needed. I want to be prepared for my hubby. I am the research nut as I learned to be 14 years ago as my son has a rare form of Muscular Dystrophy. I do all the medical research and only looking out for the best interest of my husband and our family.
Thank you so much for your help and support through this difficult time
Stephanie V
Re: Temporal lobe surgery
Submitted by mom2mike on Fri, 2009-08-28 - 17:54
I can relate. My son will be 2 years old in a week and is scheduled for left temporal lobe surgery on October 18th. I am so scared, yet I don't have the option to think any negative thoughts.
Michael began showing signs of seizure activity when he was around one (in hindsight). In January of this year he saw a neurologists for the first time and thankfully he had an episode right in front of him. He would stand still and turn his head to the right as if something had caught his attention. He would do this repeatedly for about 20 seconds and would not respond to us when we called for him. He only seemed to have them when he was waking up or getting ready for sleep. The pedi neuro decided on a 23 hour EEG in February. And of course, when Michael was in for 23 hours he did not experience one single seizure. Exactly a week later he had his first tonic clonic seizures. Fortunately my sister cares for him while I work and my husband is in the Army and never home. My sister completely freaked and of course called me. I then rushed Michael to HM Children's Hospital and called his pedi neuro on the way. That night was awful..... he had so many seizures after that. His breathing would slow and I could feel his little body tremble. Nothing that a person next to him would notice but I couldn't put him down that night so I knew when he was having them. All the tests, MRI, eeg's & blood work up was done but they found nothing but they began in the left brain & would then generalize throughout the brain. He was so tired that night. I know he didn't get any rest. He stayed in the hospital for 5 days and finally released him with Keppra prescribed and the seizure activity had stopped due to the med.
Exactly two months (May 2009) later we were in the hospital again. I got that awful phone call from my sister and here we go again to the hopital more tests, bloodwork, MRI, EEG's and another week in the hospital and an addition of Trileptal. It stopped the tonic clonic but now has absence and head drop seizures.
A week after being released from the hospital his pedi neuro added Phenobarbitol (what a nightmare).
During the hospital stay we were referred to an epileptologist and given the intractable label. So after a 3 month waitng list to see the ever wonderful, heaven sent epileptologist we have been told that she has studied all of his tests...... and if confident that she can go in and remove the part that is causing all the havic in Michael's beautiful brain.
Is the surgery worth it? I think so. I hope so. I want my baby boy to not have to go through anymore of this. I hate not being able to make it all better. I hate feeling helpless so if this surgery can cure him and take all the difficulties that come with epilepsy and with so many unknown reasons why he's having these seizures then I pray that God places his will on his surgeons hands to cure him.
Your angel is 9 yo and can talk to you and tell you how she feels enjoy that and I know she will come out of her surgery with flying colors, just have faith. I'll keep your daughter and your family in my prayers. Keep us posted.
I can relate. My son will be 2 years old in a week and is scheduled for left temporal lobe surgery on October 18th. I am so scared, yet I don't have the option to think any negative thoughts.
Michael began showing signs of seizure activity when he was around one (in hindsight). In January of this year he saw a neurologists for the first time and thankfully he had an episode right in front of him. He would stand still and turn his head to the right as if something had caught his attention. He would do this repeatedly for about 20 seconds and would not respond to us when we called for him. He only seemed to have them when he was waking up or getting ready for sleep. The pedi neuro decided on a 23 hour EEG in February. And of course, when Michael was in for 23 hours he did not experience one single seizure. Exactly a week later he had his first tonic clonic seizures. Fortunately my sister cares for him while I work and my husband is in the Army and never home. My sister completely freaked and of course called me. I then rushed Michael to HM Children's Hospital and called his pedi neuro on the way. That night was awful..... he had so many seizures after that. His breathing would slow and I could feel his little body tremble. Nothing that a person next to him would notice but I couldn't put him down that night so I knew when he was having them. All the tests, MRI, eeg's & blood work up was done but they found nothing but they began in the left brain & would then generalize throughout the brain. He was so tired that night. I know he didn't get any rest. He stayed in the hospital for 5 days and finally released him with Keppra prescribed and the seizure activity had stopped due to the med.
Exactly two months (May 2009) later we were in the hospital again. I got that awful phone call from my sister and here we go again to the hopital more tests, bloodwork, MRI, EEG's and another week in the hospital and an addition of Trileptal. It stopped the tonic clonic but now has absence and head drop seizures.
A week after being released from the hospital his pedi neuro added Phenobarbitol (what a nightmare).
During the hospital stay we were referred to an epileptologist and given the intractable label. So after a 3 month waitng list to see the ever wonderful, heaven sent epileptologist we have been told that she has studied all of his tests...... and if confident that she can go in and remove the part that is causing all the havic in Michael's beautiful brain.
Is the surgery worth it? I think so. I hope so. I want my baby boy to not have to go through anymore of this. I hate not being able to make it all better. I hate feeling helpless so if this surgery can cure him and take all the difficulties that come with epilepsy and with so many unknown reasons why he's having these seizures then I pray that God places his will on his surgeons hands to cure him.
Your angel is 9 yo and can talk to you and tell you how she feels enjoy that and I know she will come out of her surgery with flying colors, just have faith. I'll keep your daughter and your family in my prayers. Keep us posted.
Re: Temporal lobe surgery
Submitted by susibeee on Wed, 2009-08-26 - 09:09
Hi Anne Marie,
I'm sure you are feeling a little more at ease from all of the positive feedback you have received. Your story struck me as i had surgery to remove a tumour from my temporal lobe on 29th Sept 06, Approaching 3 yrs seizure free!! It is easy for me to say now, being on the other side of surgery how worthwhile it was!!
It is a frightening time leading up to the operation especially when you are given all the risks etc though I truly believe there is so much experience and success in Neurosurgery nowadays. The sureons are incredible.
The operation and recovery was so much better than i imagined, the only negatives were a few terrible headaches, a little sore on the side of my head for sometime afterwards but all to be expected. I might add i wasn't a huge fan of having part of my hair shaved, it grew back so quickly though and you wouldn't know now unless i point out exactly where the scar is!
All the very best to you and your daughter, she is lucky to have you by her side, I will be thinking of you both and sending well wishes on the 29th!!!!
Sb
Hi Anne Marie,
I'm sure you are feeling a little more at ease from all of the positive feedback you have received. Your story struck me as i had surgery to remove a tumour from my temporal lobe on 29th Sept 06, Approaching 3 yrs seizure free!! It is easy for me to say now, being on the other side of surgery how worthwhile it was!!
It is a frightening time leading up to the operation especially when you are given all the risks etc though I truly believe there is so much experience and success in Neurosurgery nowadays. The sureons are incredible.
The operation and recovery was so much better than i imagined, the only negatives were a few terrible headaches, a little sore on the side of my head for sometime afterwards but all to be expected. I might add i wasn't a huge fan of having part of my hair shaved, it grew back so quickly though and you wouldn't know now unless i point out exactly where the scar is!
All the very best to you and your daughter, she is lucky to have you by her side, I will be thinking of you both and sending well wishes on the 29th!!!!
Sb