And opinions from sites like this one which are ok with and good help and support for people like us with different conditions we have and side effects of them and meds, test and treatment and such etc, I am ok with It all, from the medical system etc end of it, the condition I have and peoples opinions here and from my doc and family and friends or others etc, I've been given some things that do with my condition I have had brought up to me, I take into consideration and do a little thinking… read more
Ultimately it is YOUR Decision.
What you want to do. There are many options out there explore with your neurologist, and only with your neurologist they know more than we do and as my sister says, who is a general practitioner, don’t rely on Dr. google.
As far as the medical community, the only thing I’ve found bad, and pardon my language here, are those mother-fucking insurance companies. They don’t care about people, Just money.
I'd go for it. It would be worth a few years at least, of being seizure free
It's great that you've developed such a balanced and thoughtful approach to managing your epilepsy since your diagnosis at age 7. Your openness to learning about treatment options while maintaining autonomy in your healthcare decisions is admirable. You're absolutely right that while doctors and loved ones can make Show Full Answer
I wouldn’t have the surgery unless it was absolutely necessary as it is for many ppl. For some they would not have quality of life without it. Thankfully I’m not in that category. I still go to my appts and am glad I was finally able to get rid of some of my meds Yay!! I take whatever my neurologist says as he’s the one who went through all the schooling to get where he is- not me. I will let him know of any problems or issues I have with new medications and try something else or a different dosage. It’s worked for me for over 40 years of having seizures, even if they happen somewhere I don’t want them to; but I stopped going to the hospital after one like I’m told I’m supposed to because I find it a waste of time, money and drs. All they do is put me on an examination table ( 4-5 feet off the floor) and then keep turning off and all the lights every half hour or when they remember they are supposed to check on me and then tell me to go back home and take it easy; so what’s the point in going in? But all my drs know this and are good with me just letting them know whenever I see them. But I still make sure to take my medication when I’m supposed to, get as much rest or sleep as possible and pay attention to my auras and my dogs warnings or alerts. Even the foster dog I’ve had for almost 6 months has started alerting me to seizures and she’s more aggressive about not letting me out if she senses one; whereas my dog has let me leave the house and I ended up having a seizure in the receptionist office going to see a specialist here and they refused to see me afterwards so I’ve gotta wait anywhere up to a year to get to see her again. But for the most part I’m great with what my doctor says
Use to going through seizures more severe than now, once was told it would never be possible. Out of all the Dr.s I had seen through the years 1 told me it might be possible, was told test surgery would have to be done to find if main surgery could be done. I just wanted a definite answer, so was willing to go through all I would have to hear final answer. Out of what experienced I could have the 2nd surgery I am happy I did. Went seizure free for 9 years, once started having them again were not as severe. Have had VNS implant when started again and since I've aged don't have many or often as did.