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Has anyone had brain surgery due to epilepsy?
Thu, 01/06/2011 - 11:28May have brain surgery...Need advice!!!!
This is the first time I have ever used this website, so please forgive me if I miss something. So, here's my story...I am 31 years old. I was diagnosed with epilepsy in 2004. I have had a few grand mal seizures (around 6 or 7), but I have a lot of petit mal seizures (complex partial) - over 60 in 2010. This has greatly affected my life. I totaled my car in 2010 because I had a seizure while driving. Thank God no one was hurt, including myself. Needless to say, I cannot drive right now. I also has several seizures at work, which put a stress on things. I have tried many medicines (not sure of spelling), including, Lamictal, Keppra, Carbatrol, and others. I have tried name brand and generic. My seizures have not gotten better. My doc is now recommending brain surgery, as a lesion has been found in my front temporal lobe. It is currently not a tumor, but could turn into one. I have not taken the WADA yet, but it will be scheduled soon. I would love to speak with anyone who has had brain surgery and the results he/she has had. Thanks!
Comments
Re: Has anyone had brain surgery due to epilepsy?
Submitted by ambrakay on Thu, 2011-01-06 - 16:38
Yes. I had a DNET tumor (benign) on my brain stem and was diagnosed with temporal lobe epilepsy. Was having intractible complex partial seizures as you are. My body does NOT respond well to anti-convulsants (Trileptal landed me in the ER then ICU in a coma) and they knew they needed to remove the tumor as it was causing gliomas (pre-cancerous cells) to form in my amygdala & hippocampus. I will be honest - I had the surgery 7/25/10, it was not too terribly painful, but the recovery has been incredibly difficult. My surgery was two-fold though. A temporal lobe resection with tumor & glioma removal. They removed a portion of my hippocampus and over 90% of my amygdala on my right side. I have difficulty with memory and processing emotions now. Also, the temporal lobe resection piece of it (for me) was quite unsuccessful. My seizure intensity has decreased significantly while the frequency has increased exponentially. If I had it to do over, personally, I wouldn't. I know that the gliomas would have eventually become malignant and killed me, but as it stands, I'm looking at having the surgery again anyway. So I'm a bad example because my situation was a little more complicated. However, a standard temporal lobe resection is generally something like 97% successful with minimal recovey time. Go for it. God will take good care of you :-)
-Ambra :-)
Yes. I had a DNET tumor (benign) on my brain stem and was diagnosed with temporal lobe epilepsy. Was having intractible complex partial seizures as you are. My body does NOT respond well to anti-convulsants (Trileptal landed me in the ER then ICU in a coma) and they knew they needed to remove the tumor as it was causing gliomas (pre-cancerous cells) to form in my amygdala & hippocampus. I will be honest - I had the surgery 7/25/10, it was not too terribly painful, but the recovery has been incredibly difficult. My surgery was two-fold though. A temporal lobe resection with tumor & glioma removal. They removed a portion of my hippocampus and over 90% of my amygdala on my right side. I have difficulty with memory and processing emotions now. Also, the temporal lobe resection piece of it (for me) was quite unsuccessful. My seizure intensity has decreased significantly while the frequency has increased exponentially. If I had it to do over, personally, I wouldn't. I know that the gliomas would have eventually become malignant and killed me, but as it stands, I'm looking at having the surgery again anyway. So I'm a bad example because my situation was a little more complicated. However, a standard temporal lobe resection is generally something like 97% successful with minimal recovey time. Go for it. God will take good care of you :-)
-Ambra :-)
Re: Has anyone had brain surgery due to epilepsy?
Submitted by peytonwelch on Thu, 2011-01-06 - 16:46
Thanks for your honesty Ambra. I have a lot of people praying for me, which I know is a huge plus. I have scheduled to take the WADA this Monday, January 10th. My prayer is that this test will show the best results, so that the dr.'s can help make the best choice - whether or not I need to have the surgery (need being the key word). The whole idea is a bit scary, but the medicine has simply not been helping...
Thanks for your honesty Ambra. I have a lot of people praying for me, which I know is a huge plus. I have scheduled to take the WADA this Monday, January 10th. My prayer is that this test will show the best results, so that the dr.'s can help make the best choice - whether or not I need to have the surgery (need being the key word). The whole idea is a bit scary, but the medicine has simply not been helping...
Re: Has anyone had brain surgery due to epilepsy?
Submitted by peytonwelch on Mon, 2011-01-24 - 16:13
Thanks for the reply. I will email you soon!
Thanks for the reply. I will email you soon!