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VNS Surgery? Need opinions!

Wed, 07/04/2018 - 12:19
Hi, I'm Alexia and I'm 12 years old. I've had Epilepsy since I was 9 and a half and it just came out of the blue. At the time, my dad had just lost his job and we were moving, which added onto the stress of having approximately 40-50 absence seizures a day. We moved in the summer, before my birthday, and all of a sudden I got drop seizures. Thankfully, I went on a med that stopped them. A year later, however, I got grand mal seizures. I had them in my sleep and the first one I had confused me since I woke up, not in my bed, but on the floor with a paramedic poking me to get a blood sample. Again, though, my doctor found a medicine to get rid of those, so now I just have absence and tonic clonics. I have tried about 13-14 medications and none of them have worked. All the medications I have tried have had horrible side effects and only increased the number of seizures I was having. Surprisingly, the latest medications I have tried, number 13, 14, and 15 (15 is a CBD so I don't count it), have worked the most. I am currently on Onfi, Lamictal, and Charlotte's Web. I just went to my neurologist last week, and he said that he would up my Lamictal dose, but other than that he couldn't do anything else for me. Then he recommended VNS. Every time I heard that name, I would cry, because I'm afraid to have surgery and I'm afraid about if it'll work, the side effects, etc. However, it's my only option if I want to be 'seizure free', or at least close to it. Right now, my seizures (if I'm doing nothing) is 5-7 a day. If I'm doing activities, they are about 8-13, maybe more depending on the activity. I've researched and so far I have found nothing promising about the VNS, so I came on this website for some help. I need some opinions from other people who have had the VNS. Please give me some opinions, I want to make a choice that I won't regret.

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