eightballgal
04-18-2006, 03:45 AM
Hi there, I dont know much about this site or the net, but I'm going to give it a go.
I have had 4 unexpected brain surgeries since June 2005. No one bothered to tell me about the siezures following. I am only having 1 or 2 grand mals per month. I don't know anyone with epilepsy am and horrified.
I am currently on 300mg Dilantin & 150mg Lamictal per day. I constantly feel like I am on some sort of trip or something and am going insane.
Is there anyone out there who has experienced seizures following removal of a tumor etc. If so please tell me which meds are working for you.
I would love to hear from anyone offering any helpful or incouraging info.
I have had 4 unexpected brain surgeries since June 2005. No one bothered to tell me about the siezures following. I am only having 1 or 2 grand mals per month. I don't know anyone with epilepsy am and horrified.
I am currently on 300mg Dilantin & 150mg Lamictal per day. I constantly feel like I am on some sort of trip or something and am going insane.
Is there anyone out there who has experienced seizures following removal of a tumor etc. If so please tell me which meds are working for you.
I would love to hear from anyone offering any helpful or incouraging info.
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Discododi
04-18-2006, 10:56 AM
Hi Susan,
I had a colloid cyst of the third ventricle (benign tumor) removed November 2000. I had a seizure in post-op immediately following surgery. I was on anti seizure med for 1 year post op with no siezures during that time. My neurosurgeon said I could wean from the med, and see what happens. I weaned with his permission, and did very well for a couple of years. I felt the healing in my brain was moving along at a better rate, I was not nearly as sleepy or fatigued as with the meds. ....Then, I started to get dizzy at odd times. Once I was in a huge reception hall that had an enourmous printed carpet on the floor. The combination of the carpet and the large rows of chairs made me feel very ill.
I went back to my neurologist and had a sleep deprived eeg. The results were inconclusive. It really showed nothing, but was called abnormal. I started taking Trileptal. I never could reach the recommended dosage, but settled for a low dose, which I continue today without problems.
Seizures can happen after a brain injury (TBI or ABI ((Aquired)).
Please feel free to ask any questions you might have, Dodi
(what sort of surgery did you have?)
I had a colloid cyst of the third ventricle (benign tumor) removed November 2000. I had a seizure in post-op immediately following surgery. I was on anti seizure med for 1 year post op with no siezures during that time. My neurosurgeon said I could wean from the med, and see what happens. I weaned with his permission, and did very well for a couple of years. I felt the healing in my brain was moving along at a better rate, I was not nearly as sleepy or fatigued as with the meds. ....Then, I started to get dizzy at odd times. Once I was in a huge reception hall that had an enourmous printed carpet on the floor. The combination of the carpet and the large rows of chairs made me feel very ill.
I went back to my neurologist and had a sleep deprived eeg. The results were inconclusive. It really showed nothing, but was called abnormal. I started taking Trileptal. I never could reach the recommended dosage, but settled for a low dose, which I continue today without problems.
Seizures can happen after a brain injury (TBI or ABI ((Aquired)).
Please feel free to ask any questions you might have, Dodi
(what sort of surgery did you have?)
Travis from MN
04-18-2006, 04:42 PM
As a child I had a brain tumor removed, left hemisphear near speach and fine motor.
I still have seizures now; 25 years later.
Trauma to the brain is hard to predict what will happen, and how long; even for surgery.
--Travis
I still have seizures now; 25 years later.
Trauma to the brain is hard to predict what will happen, and how long; even for surgery.
--Travis
eightballgal
04-22-2006, 04:22 AM
Hi Susan,
I had a colloid cyst of the third ventricle (benign tumor) removed November 2000. I had a seizure in post-op immediately following surgery. I was on anti seizure med for 1 year post op with no siezures during that time. My neurosurgeon said I could wean from the med, and see what happens. I weaned with his permission, and did very well for a couple of years. I felt the healing in my brain was moving along at a better rate, I was not nearly as sleepy or fatigued as with the meds. ....Then, I started to get dizzy at odd times. Once I was in a huge reception hall that had an enourmous printed carpet on the floor. The combination of the carpet and the large rows of chairs made me feel very ill.
I went back to my neurologist and had a sleep deprived eeg. The results were inconclusive. It really showed nothing, but was called abnormal. I started taking Trileptal. I never could reach the recommended dosage, but settled for a low dose, which I continue today without problems.
Seizures can happen after a brain injury (TBI or ABI ((Aquired)).
Please feel free to ask any questions you might have, Dodi
(what sort of surgery did you have?)
I had a colloid cyst of the third ventricle (benign tumor) removed November 2000. I had a seizure in post-op immediately following surgery. I was on anti seizure med for 1 year post op with no siezures during that time. My neurosurgeon said I could wean from the med, and see what happens. I weaned with his permission, and did very well for a couple of years. I felt the healing in my brain was moving along at a better rate, I was not nearly as sleepy or fatigued as with the meds. ....Then, I started to get dizzy at odd times. Once I was in a huge reception hall that had an enourmous printed carpet on the floor. The combination of the carpet and the large rows of chairs made me feel very ill.
I went back to my neurologist and had a sleep deprived eeg. The results were inconclusive. It really showed nothing, but was called abnormal. I started taking Trileptal. I never could reach the recommended dosage, but settled for a low dose, which I continue today without problems.
Seizures can happen after a brain injury (TBI or ABI ((Aquired)).
Please feel free to ask any questions you might have, Dodi
(what sort of surgery did you have?)
eightballgal
04-22-2006, 04:48 AM
Hi Dodi,
Thank you so much for responding, I have had 4 surgerys the first 2 were to embolise and extract an AVM from my cerebellum (June 05), then I had a meningioma removed from the right frontal lobe (Sept 05), followed by the draining of an abscess caused by infection received during meningioma extraction (Oct 05).
I am still on medication to fight the infection. I just want to know if there is actually light at the end of the tunnel or if I am to learn to live like this. I am currently on Dilantin, Lamictal and Clonazepam, the medications make me feel like I am loosing my mind (ie intrusive thoughts,anxiety and extreme hightened self awareness). I am now in the process of dropping the Lamictal and Dilantin, I don't know what I will be left with but would love the hear what people with similiar circumstances have found effective.
I guess I would like to hear from people with similiar experiences ie. those who have suffered post op infections and scarring/gliosis. I would really appreciate hearing any experiences they have had good or bad, particularly if it can help me to find the right meds to suit and get me off the rollercoaster soon. It helps to know I am not alone....
Thank you so much for responding, I have had 4 surgerys the first 2 were to embolise and extract an AVM from my cerebellum (June 05), then I had a meningioma removed from the right frontal lobe (Sept 05), followed by the draining of an abscess caused by infection received during meningioma extraction (Oct 05).
I am still on medication to fight the infection. I just want to know if there is actually light at the end of the tunnel or if I am to learn to live like this. I am currently on Dilantin, Lamictal and Clonazepam, the medications make me feel like I am loosing my mind (ie intrusive thoughts,anxiety and extreme hightened self awareness). I am now in the process of dropping the Lamictal and Dilantin, I don't know what I will be left with but would love the hear what people with similiar circumstances have found effective.
I guess I would like to hear from people with similiar experiences ie. those who have suffered post op infections and scarring/gliosis. I would really appreciate hearing any experiences they have had good or bad, particularly if it can help me to find the right meds to suit and get me off the rollercoaster soon. It helps to know I am not alone....