Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
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 audiophile on Fri, 2009-09-18 - 12:47
It is funny that I come across this forum as I sit in the waiting room of Cooks Children's surgery center during my daughter's second surgery. She had a temporal lobectomy (3/4) in 2007 along with a resection of the parietal lobe and a transection of the frontal lobe. I can tell you that it did help control the motor seizures for the most part. The only downside was loss of sensation in the left arm and hand which almost fully returned with therapy. She also suffers with short term memory loss and multitasking.
We now are here because the sensory seizures increased in the last two years and the four medications that she is on are simply not helping. They did several new tests including a MEG scan (in Houston) a spec scan and several more video EEGs, they have pinpointed an area in the lower parietal lobe that the seizures are originating from. Her seizures are stemming from a type of dysplasia, tissue that did not form correctly. This time they are going to remove the rest of the temporal and the new area that they located all the way up to the previous resection.
The possible side effects of this current surgery are vision loss (partial) and now we know that it could effect her hearing by removing the rest of the temporal lobe.
It was a difficult decision, this one even more than the first. However, I wouldn't do anything different. My daughter was 13 when this started and is 16 now. She has used just about every medication available and is currently on four. She still has the seizures and it had gotten to the point where the rescue meds weren't even working. She cannot drive or be alone or even take a bath by herself, something she used to love to do. She even had to give up marching band because she can only attend half day at school.
I can't say that it is the right decision for everybody, but it was almost the only one for my wife, myself and my daughter.
The doctors and surgeons here are awesome and really take it personally to help all the patients to get better. I have never seen a more trustworthy and compassionate medical team in all my life. We live in Oklahoma City, but make the three hour drive to Fort Worth because we feel this is where she will get the best care.
I hope all goes well for your child and that this helps them live a "normal life". It is a rough road but it can be traveled. We have lots of family and friends that support us as well as a strong church family. We will keep you in our prayers, please keep us posted.
Michael
p.s. the 29th is my birthday so I am confident all will go well
It is funny that I come across this forum as I sit in the waiting room of Cooks Children's surgery center during my daughter's second surgery. She had a temporal lobectomy (3/4) in 2007 along with a resection of the parietal lobe and a transection of the frontal lobe. I can tell you that it did help control the motor seizures for the most part. The only downside was loss of sensation in the left arm and hand which almost fully returned with therapy. She also suffers with short term memory loss and multitasking.
We now are here because the sensory seizures increased in the last two years and the four medications that she is on are simply not helping. They did several new tests including a MEG scan (in Houston) a spec scan and several more video EEGs, they have pinpointed an area in the lower parietal lobe that the seizures are originating from. Her seizures are stemming from a type of dysplasia, tissue that did not form correctly. This time they are going to remove the rest of the temporal and the new area that they located all the way up to the previous resection.
The possible side effects of this current surgery are vision loss (partial) and now we know that it could effect her hearing by removing the rest of the temporal lobe.
It was a difficult decision, this one even more than the first. However, I wouldn't do anything different. My daughter was 13 when this started and is 16 now. She has used just about every medication available and is currently on four. She still has the seizures and it had gotten to the point where the rescue meds weren't even working. She cannot drive or be alone or even take a bath by herself, something she used to love to do. She even had to give up marching band because she can only attend half day at school.
I can't say that it is the right decision for everybody, but it was almost the only one for my wife, myself and my daughter.
The doctors and surgeons here are awesome and really take it personally to help all the patients to get better. I have never seen a more trustworthy and compassionate medical team in all my life. We live in Oklahoma City, but make the three hour drive to Fort Worth because we feel this is where she will get the best care.
I hope all goes well for your child and that this helps them live a "normal life". It is a rough road but it can be traveled. We have lots of family and friends that support us as well as a strong church family. We will keep you in our prayers, please keep us posted.
Michael
p.s. the 29th is my birthday so I am confident all will go well
Re: Temporal lobe surgery
Submitted by dibble on Sun, 2013-06-02 - 12:23
Hello, I had a left temporal lobectomy in 2002 and i have been seizure free since. I have lowered my medications over the past two years and now i just take dilantin 150mg daily. I cant lower them anymore unless i stop driving for a year. I just wanted to ask you if you have felt better since coming off All of your medications. What sort of seizures were you having and are you working now. Take care and good luck in the future. From Jason.