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Temporal lobe surgery

Tue, 07/28/2009 - 03:05

Hello 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 lostfortime on Tue, 2010-04-13 - 19:08

Hi everyone, hope you don't might some input from an Australian patient

My right temporal lobe surgery was done on 18March2010. So nearly 4 weeks since surgery.

Feeling really good just tired and have to restrict domestic activities like lifting heavy stuff.

I'm 47 and has Epilepsy since measles encephalitis at aged 2yrs Simple/Complex Partials.

I'm thinking should have done it sooner but my old neuro was against surgery as a had no tonic clonics.

Did drive up until 10yrs when turns went complex partial.

Apart from huge HEADACHE from surgery everything is good.

Might have lost some leftside vision but yet to be tested professionally.

Maybe just paranoid here.

My neurosurgeon said best to get surgery done before 55yrs due to blood clotting issues.

He said that age is a marking when that can happen during surgery.

I would go ahead with surgery as long as you don't have any other big medical issues that may complicate things.

I was given a horror list of things that can go wrong, stroke...death but the neurosurgical team I had in Melbourne have never lost a patient in over 350 operations.

good luck...........Kris

 

Hi everyone, hope you don't might some input from an Australian patient

My right temporal lobe surgery was done on 18March2010. So nearly 4 weeks since surgery.

Feeling really good just tired and have to restrict domestic activities like lifting heavy stuff.

I'm 47 and has Epilepsy since measles encephalitis at aged 2yrs Simple/Complex Partials.

I'm thinking should have done it sooner but my old neuro was against surgery as a had no tonic clonics.

Did drive up until 10yrs when turns went complex partial.

Apart from huge HEADACHE from surgery everything is good.

Might have lost some leftside vision but yet to be tested professionally.

Maybe just paranoid here.

My neurosurgeon said best to get surgery done before 55yrs due to blood clotting issues.

He said that age is a marking when that can happen during surgery.

I would go ahead with surgery as long as you don't have any other big medical issues that may complicate things.

I was given a horror list of things that can go wrong, stroke...death but the neurosurgical team I had in Melbourne have never lost a patient in over 350 operations.

good luck...........Kris

 

Re: Temporal lobe surgery

Submitted by Omarstage on Sat, 2010-08-07 - 01:09

 

            Hi,

     Thanks for the message, your message was very helpful to read. 

      I just wanted to know wich hospital in Australia did your Surgery.

      I am an Australian patient and that would help me if you could tell me, I am considering the Austin Health but we have been going no where for a while now.

 Regards,

Omar.

 

    

 

            Hi,

     Thanks for the message, your message was very helpful to read. 

      I just wanted to know wich hospital in Australia did your Surgery.

      I am an Australian patient and that would help me if you could tell me, I am considering the Austin Health but we have been going no where for a while now.

 Regards,

Omar.

 

    

Re: Temporal lobe surgery

Submitted by Silver5 on Sun, 2012-05-13 - 08:10

Hi Kris,

I am very happy to read the story of someone who had seizures (just like myself) since childhood. I am from the netherlands so excuse me if my english isn't quit right ;-)  I am now 48 and have had the full range of meds, and in a very high dosis. I still have seizures (before my VNS about 30 a month) now about 12 a month and my neurologist suggest surgery.

I would have been operated already in 2010 but the memory test (WADA) is preformed with barbiturates, and I took three times the maximum of barbiturates myself. I failed the test by just 1 point, and that was a reason to implant the VNS (because without it I wouldn't be able to get rid of the barbiturates) and they started to take off the barbiturates. It took me more than a year, and this year in August they are doing the memory test again, and If the result is than oké I will be operated this year.

So when I become 50 I have a very large party if all goes well (I must say i am afraid of the outcome like being paralized on the left side because they have to take away the hippocampus and amygdala and the last one lies against the part of the brain that if they touch it you get paralized) So happy and afraid at the same time but if i read your story it gives me courage to go on.

With regards,

Silver5

Hi Kris,

I am very happy to read the story of someone who had seizures (just like myself) since childhood. I am from the netherlands so excuse me if my english isn't quit right ;-)  I am now 48 and have had the full range of meds, and in a very high dosis. I still have seizures (before my VNS about 30 a month) now about 12 a month and my neurologist suggest surgery.

I would have been operated already in 2010 but the memory test (WADA) is preformed with barbiturates, and I took three times the maximum of barbiturates myself. I failed the test by just 1 point, and that was a reason to implant the VNS (because without it I wouldn't be able to get rid of the barbiturates) and they started to take off the barbiturates. It took me more than a year, and this year in August they are doing the memory test again, and If the result is than oké I will be operated this year.

So when I become 50 I have a very large party if all goes well (I must say i am afraid of the outcome like being paralized on the left side because they have to take away the hippocampus and amygdala and the last one lies against the part of the brain that if they touch it you get paralized) So happy and afraid at the same time but if i read your story it gives me courage to go on.

With regards,

Silver5

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