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Welcome to the Coping With Epilepsy Forums
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Hi masterjen,
Thank you for your kind welcome. I really like CWE and take my word if you or any others need info. about meds or surgery I will be more than happy to help out. One thing I have found that works great reducing sz. is vitamin B12. Wishing you only the best and May God Bless You!
Sue
Thank you for your kind welcome. I really like CWE and take my word if you or any others need info. about meds or surgery I will be more than happy to help out. One thing I have found that works great reducing sz. is vitamin B12. Wishing you only the best and May God Bless You!
Sue
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Welcome!
Sue,
What type epilepsy were you diagnosed with and what were your surgeries? I have shared with a few people my experience. I ignored a lot of partial seizures, absence seizures mostly. I suspect I had a few while driving. After who knows how long a period of having partial seizures I had a generalized clonic tonic that was status epilepticus. Hopefully others who read this don't get tired as I share this with others.
The only thing I really remember afterwards is being told by a doctor that wasn't a specialist that the radiologist's report said that there was a suspect tumor. I finally found a note to my family doctor from my specialist that said I had right frontal lobe seizure disorder. As I type this I do remember a meeting with a surgeon saying where they suspect scar tissue was in a risk area of the brain to reach even for a biopsy. My specialist has me on medication the rest of my life as he stated in the report that I have a gliosis. I want to ask my family doctor what exactly a gliosis is and is it something that will be a worry as I get older. I am currently well controlled on medication.
To others who read this apologize if I repeat my story too much. I have to even ask my wife on a regular basis of the details.
Also thanks to those on the CWE forum as I seem to be learning new things each time I visit.
What type epilepsy were you diagnosed with and what were your surgeries? I have shared with a few people my experience. I ignored a lot of partial seizures, absence seizures mostly. I suspect I had a few while driving. After who knows how long a period of having partial seizures I had a generalized clonic tonic that was status epilepticus. Hopefully others who read this don't get tired as I share this with others.
The only thing I really remember afterwards is being told by a doctor that wasn't a specialist that the radiologist's report said that there was a suspect tumor. I finally found a note to my family doctor from my specialist that said I had right frontal lobe seizure disorder. As I type this I do remember a meeting with a surgeon saying where they suspect scar tissue was in a risk area of the brain to reach even for a biopsy. My specialist has me on medication the rest of my life as he stated in the report that I have a gliosis. I want to ask my family doctor what exactly a gliosis is and is it something that will be a worry as I get older. I am currently well controlled on medication.
To others who read this apologize if I repeat my story too much. I have to even ask my wife on a regular basis of the details.
Also thanks to those on the CWE forum as I seem to be learning new things each time I visit.
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Hello Sue
welcome to CWE
welcome to CWE
Hi gnault,
I was first diagnosed with absence sz. when I was just a kid 10 yrs. old then 2 yrs. later the complex parital sz. started up along with the absence. My neuro at the time found scar tissue on the right temporal lobe that was triggering sz. for me, the big problem is I have been on over 10 different sz. meds and not a single one has stopped my sz. I then had a DNA test done and my Epileptologist found out I am drug resistant to all sz, meds out on the market right now so I may be starting the medical marijuana this summer it all depends on my Drs. final decision. I have found that taking vitamin B12 1000 mcg. once a day has been a great help reducing my sz.
The 2 surgeries I had was a video e.e.g. where they put the depth electrodes directly on my brain so they could pinpoint the area of my brain triggering sz. a couple of yrs. after that I had ultra sound surgery done which destroyed 75% of the scar tissue with no risks, now I'm looking into gamma knife surgery because they can go deeper into the brain to destroy damage and tumors. What I really like about it is you can go home the same day as surgery unless you get to much radiation then you have to stay over night.
Here's wishing you well and May God Bless You!
Sue
I was first diagnosed with absence sz. when I was just a kid 10 yrs. old then 2 yrs. later the complex parital sz. started up along with the absence. My neuro at the time found scar tissue on the right temporal lobe that was triggering sz. for me, the big problem is I have been on over 10 different sz. meds and not a single one has stopped my sz. I then had a DNA test done and my Epileptologist found out I am drug resistant to all sz, meds out on the market right now so I may be starting the medical marijuana this summer it all depends on my Drs. final decision. I have found that taking vitamin B12 1000 mcg. once a day has been a great help reducing my sz.
The 2 surgeries I had was a video e.e.g. where they put the depth electrodes directly on my brain so they could pinpoint the area of my brain triggering sz. a couple of yrs. after that I had ultra sound surgery done which destroyed 75% of the scar tissue with no risks, now I'm looking into gamma knife surgery because they can go deeper into the brain to destroy damage and tumors. What I really like about it is you can go home the same day as surgery unless you get to much radiation then you have to stay over night.
Here's wishing you well and May God Bless You!
Sue