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 FrogM on Wed, 2009-10-07 - 10:35
Laura M -
Ann-Marie, I hope everything went well for your daughter - I've been thinking about all of you constantly!
Laura M -
Ann-Marie, I hope everything went well for your daughter - I've been thinking about all of you constantly!
Re: Temporal lobe surgery
Submitted by Sarah524 on Mon, 2009-10-12 - 20:40
Anne-Marie,
I have had refractory epilepsy for almost 12 years. I am 20. When I was 14, I had 2 separate right temporal lobectomies 3 months apart from eachother. I had a 95% chance of being seizure free after the first and a 75% chance after the second. I am still having 4-6 seizures a week. While this isn't great, it is much better than the 200 seizures I was having a day before the surgeries. I am being evaluated now for a third surgery or the Neuropace Responsive Stimulator.
I hope all goes well!!!
Sarah
Anne-Marie,
I have had refractory epilepsy for almost 12 years. I am 20. When I was 14, I had 2 separate right temporal lobectomies 3 months apart from eachother. I had a 95% chance of being seizure free after the first and a 75% chance after the second. I am still having 4-6 seizures a week. While this isn't great, it is much better than the 200 seizures I was having a day before the surgeries. I am being evaluated now for a third surgery or the Neuropace Responsive Stimulator.
I hope all goes well!!!
Sarah
Re: Temporal lobe surgery
Submitted by stephanieev on Fri, 2011-02-18 - 16:50
Gail,
How did your surgery go? Hope you are better and hopefully seizure free or lessen at least
My husband Bryan was diagnosed with a Ganglioglioma Tumor two months ago. He is choosing to remove the tumor 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
Gail,
How did your surgery go? Hope you are better and hopefully seizure free or lessen at least
My husband Bryan was diagnosed with a Ganglioglioma Tumor two months ago. He is choosing to remove the tumor 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