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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 Thomas Jenkins on Tue, 2010-07-27 - 08:00
I beg to differ with your doctors, but meds won't kill you in ten years or so. I'm still alive after 37 years.
I had my forst seizure in 77, and none until 1990 After having three seizures, each about 5 months, my depakote level was raised to a "toxic" level. I stayed seizure free for 14 years. The last several years, my wife and friends told me that started to become sluggusg and would drop off asleep even during the livliest of discussions. I did have a near fatal outcome and sincess then have on a varirty of meds which have not been too successful. Now, my regimine has been switched to yet another set of drugs and, knock on wood, they will continue, seven months and counting. Nevertheless, because I've been on somay types of drug regimine, my neurologist to for eavluation as a possible candidate for surgery.
I began my testing in May with yet another battery next month. While my suitability is being evaluated, the recommendation is that if I'm sound to a candidate that I wait nand see the new meds continue. Then, the need for surgery and its inherent risks would be moot.
As for side effects from meds, excessive weight gain, premarure hair loss, dangerouly low sodium (trileptal), extremely low blood pressure when it dropped all the way down to 54/34, mental grogginess, loss of memory (I have a hole of about 15 years or so I can recall bits and oieces when something is said that triggers recall of a particular event but my general recall of life over those years is is mostly lost. I remember little of the years of my children's development from early childhood through their early college years. Whether or nor not the memory loss is due to seizure or drugs or the seizures, neither I nor my neurologist is sure since the seizures or the drugs can cause that to happen My day to day cognative ability was effected and now, my current side effect is that I am unable to sleep any more than hours per night and find myself tired most days. Start out tired and end up tired.
For me surgery is being looked at as a quality of life issue.
If I its found that I'm candidate for surgery, I really know how I'll respond.
Good luck on your journey
I beg to differ with your doctors, but meds won't kill you in ten years or so. I'm still alive after 37 years.
I had my forst seizure in 77, and none until 1990 After having three seizures, each about 5 months, my depakote level was raised to a "toxic" level. I stayed seizure free for 14 years. The last several years, my wife and friends told me that started to become sluggusg and would drop off asleep even during the livliest of discussions. I did have a near fatal outcome and sincess then have on a varirty of meds which have not been too successful. Now, my regimine has been switched to yet another set of drugs and, knock on wood, they will continue, seven months and counting. Nevertheless, because I've been on somay types of drug regimine, my neurologist to for eavluation as a possible candidate for surgery.
I began my testing in May with yet another battery next month. While my suitability is being evaluated, the recommendation is that if I'm sound to a candidate that I wait nand see the new meds continue. Then, the need for surgery and its inherent risks would be moot.
As for side effects from meds, excessive weight gain, premarure hair loss, dangerouly low sodium (trileptal), extremely low blood pressure when it dropped all the way down to 54/34, mental grogginess, loss of memory (I have a hole of about 15 years or so I can recall bits and oieces when something is said that triggers recall of a particular event but my general recall of life over those years is is mostly lost. I remember little of the years of my children's development from early childhood through their early college years. Whether or nor not the memory loss is due to seizure or drugs or the seizures, neither I nor my neurologist is sure since the seizures or the drugs can cause that to happen My day to day cognative ability was effected and now, my current side effect is that I am unable to sleep any more than hours per night and find myself tired most days. Start out tired and end up tired.
For me surgery is being looked at as a quality of life issue.
If I its found that I'm candidate for surgery, I really know how I'll respond.
Good luck on your journey
Re: Temporal lobe surgery
Submitted by stephanieev on Fri, 2011-02-18 - 17:17
Aussie,
My husband had seizures for 20 yrs and was never on meds. His suregon is wanting him on some for his up coming brain surgery on March 2011. Hoping since he has not had meds for so long the removal of the tumor will take away the seizures. Happy to see a good out come for you though, take care and would love some input.
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
Aussie,
My husband had seizures for 20 yrs and was never on meds. His suregon is wanting him on some for his up coming brain surgery on March 2011. Hoping since he has not had meds for so long the removal of the tumor will take away the seizures. Happy to see a good out come for you though, take care and would love some input.
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 Thomas Jenkins on Tue, 2010-07-27 - 08:00
I beg to differ with your doctors, but meds won't kill you in ten years or so. I'm still alive after 37 years.
I had my forst seizure in 77, and none until 1990 After having three seizures, each about 5 months, my depakote level was raised to a "toxic" level. I stayed seizure free for 14 years. The last several years, my wife and friends told me that started to become sluggusg and would drop off asleep even during the livliest of discussions. I did have a near fatal outcome and sincess then have on a varirty of meds which have not been too successful. Now, my regimine has been switched to yet another set of drugs and, knock on wood, they will continue, seven months and counting. Nevertheless, because I've been on somay types of drug regimine, my neurologist to for eavluation as a possible candidate for surgery.
I began my testing in May with yet another battery next month. While my suitability is being evaluated, the recommendation is that if I'm sound to a candidate that I wait nand see the new meds continue. Then, the need for surgery and its inherent risks would be moot.
As for side effects from meds, excessive weight gain, premarure hair loss, dangerouly low sodium (trileptal), extremely low blood pressure when it dropped all the way down to 54/34, mental grogginess, loss of memory (I have a hole of about 15 years or so I can recall bits and oieces when something is said that triggers recall of a particular event but my general recall of life over those years is is mostly lost. I remember little of the years of my children's development from early childhood through their early college years. Whether or nor not the memory loss is due to seizure or drugs or the seizures, neither I nor my neurologist is sure since the seizures or the drugs can cause that to happen My day to day cognative ability was effected and now, my current side effect is that I am unable to sleep any more than hours per night and find myself tired most days. Start out tired and end up tired.
For me surgery is being looked at as a quality of life issue.
If I its found that I'm candidate for surgery, I really know how I'll respond.
Good luck on your journey
I beg to differ with your doctors, but meds won't kill you in ten years or so. I'm still alive after 37 years.
I had my forst seizure in 77, and none until 1990 After having three seizures, each about 5 months, my depakote level was raised to a "toxic" level. I stayed seizure free for 14 years. The last several years, my wife and friends told me that started to become sluggusg and would drop off asleep even during the livliest of discussions. I did have a near fatal outcome and sincess then have on a varirty of meds which have not been too successful. Now, my regimine has been switched to yet another set of drugs and, knock on wood, they will continue, seven months and counting. Nevertheless, because I've been on somay types of drug regimine, my neurologist to for eavluation as a possible candidate for surgery.
I began my testing in May with yet another battery next month. While my suitability is being evaluated, the recommendation is that if I'm sound to a candidate that I wait nand see the new meds continue. Then, the need for surgery and its inherent risks would be moot.
As for side effects from meds, excessive weight gain, premarure hair loss, dangerouly low sodium (trileptal), extremely low blood pressure when it dropped all the way down to 54/34, mental grogginess, loss of memory (I have a hole of about 15 years or so I can recall bits and oieces when something is said that triggers recall of a particular event but my general recall of life over those years is is mostly lost. I remember little of the years of my children's development from early childhood through their early college years. Whether or nor not the memory loss is due to seizure or drugs or the seizures, neither I nor my neurologist is sure since the seizures or the drugs can cause that to happen My day to day cognative ability was effected and now, my current side effect is that I am unable to sleep any more than hours per night and find myself tired most days. Start out tired and end up tired.
For me surgery is being looked at as a quality of life issue.
If I its found that I'm candidate for surgery, I really know how I'll respond.
Good luck on your journey