arnie
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Hello all! I've posted some of this info in other threads, but I decided to start a new one to update you on my vns experiences.
I've had diagnosed epilepsy and been on meds for just over 30 years. The meds control the tonic-clonics but not the simple and complex partial seizures, or the subclinical seizures, which my neurologist and I believe I am having a lot of, and with increasing frequency. Perhaps as many as ten or twenty per day. I've tried 5 meds, and Dilantin and Lamictal are the only two that have had tolerable side-effects. The Dilantin had to be discontinued after about 15 years because of gum problems and possible hippocampal sclerosis.
I was always willing to live with the partial seizures since they did not affect my life too much, but in the last 6 months or so, even though I have had fewer partial seizures (about 175 so far this year as opposed to nearly 300 at this time last year) I have had increasing memory problems and an overall "bad feeling " about what these seizures are doing to me. I imagine many of you will understand. I am very reluctant to have a lobectomy, both because that is completely irreversible, there are lots of potential side-effects, and because there has been no definite seizure locus found for me.
All that said, I talked to my neurologist about a vns implant, to at least reduce the number of partial and subclinical seizures that I have and, presumably, reduce the long-term damage that these seizures are doing to my brain. I am only 55 and I would like to have at least 30 more years of good life with a well-functioning brain. The neurologist said he thought vns would be a good coice for me, and after having done some research and talkied to a number of people who have had the procedure done, I have decided to give it a go. My insurance has approved it and I have an appointment with the surgeon on December 13. From there we will set a date for surgery. The sooner, the better, as far as I am concerned. One very positive thing is that the man who will do the implantation is the same surgeon who did a disc fusion on my wife a number of years ago. He is a world-class surgeon and I have complete faith in him.
I will keep y'all posted on how things are going. I like this community and am glad I have a place to talk and vent where people understand me. I can't talk too much about epilepsy to my wife because it really scares her. I have an adult daughter who has a seizure disorder, which helps, but it is still nice to have this large, anonymous, understanding community for support.
Onward and upward! Have a great Thanksgiving and/or Hannukah!
I've had diagnosed epilepsy and been on meds for just over 30 years. The meds control the tonic-clonics but not the simple and complex partial seizures, or the subclinical seizures, which my neurologist and I believe I am having a lot of, and with increasing frequency. Perhaps as many as ten or twenty per day. I've tried 5 meds, and Dilantin and Lamictal are the only two that have had tolerable side-effects. The Dilantin had to be discontinued after about 15 years because of gum problems and possible hippocampal sclerosis.
I was always willing to live with the partial seizures since they did not affect my life too much, but in the last 6 months or so, even though I have had fewer partial seizures (about 175 so far this year as opposed to nearly 300 at this time last year) I have had increasing memory problems and an overall "bad feeling " about what these seizures are doing to me. I imagine many of you will understand. I am very reluctant to have a lobectomy, both because that is completely irreversible, there are lots of potential side-effects, and because there has been no definite seizure locus found for me.
All that said, I talked to my neurologist about a vns implant, to at least reduce the number of partial and subclinical seizures that I have and, presumably, reduce the long-term damage that these seizures are doing to my brain. I am only 55 and I would like to have at least 30 more years of good life with a well-functioning brain. The neurologist said he thought vns would be a good coice for me, and after having done some research and talkied to a number of people who have had the procedure done, I have decided to give it a go. My insurance has approved it and I have an appointment with the surgeon on December 13. From there we will set a date for surgery. The sooner, the better, as far as I am concerned. One very positive thing is that the man who will do the implantation is the same surgeon who did a disc fusion on my wife a number of years ago. He is a world-class surgeon and I have complete faith in him.
I will keep y'all posted on how things are going. I like this community and am glad I have a place to talk and vent where people understand me. I can't talk too much about epilepsy to my wife because it really scares her. I have an adult daughter who has a seizure disorder, which helps, but it is still nice to have this large, anonymous, understanding community for support.
Onward and upward! Have a great Thanksgiving and/or Hannukah!
