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Almost 15 months seizure free!!!!!!

Thu, 04/12/2018 - 22:22
In late 2014, while eating lunch one day at work, I experienced my first complex partial seizure. I had my second a week later. Then, they started coming like crazy. At first, I was misdiagnosed. I went about my life, having hundreds of seizures of basically all types, until finally, I ended up waking up foggy minded in the back of an ambulance after a brutal tonic-clonic. I was then diagnosed, and, needless to say, I found a better doctor. I had, after all, told him several times I thought I was having seizures. He had disagreed before that. Long story short, I went through several medication trails, to no prevail, and was then told I may be a candidate for brain surgery. I was willing to give it a shot. It took about a year of testing to find out if I would be eligible. throughout the process, I was never able to find anyone else who had been through it to talk to, or able to find any literature from someone whom had experienced what I was going to go through first hand, so I went through it all on my own. On January 19th, 2017, I had a right temporal Lobectomy. Before surgery, I was having up to ten seizures a day. Since my operation, I have not had one single seizure!!!!!!! I went on a wild ride. It was an incredible journey with lots of twists and turns, and I would love to help anyone who may have questions. That being said, in order to do just that, in order to try and answer the questions I had when I was going through what I went through, I wrote a book about the experience. My way of trying to pay it forward. I self published it and made it as inexpensive as possible. I will also answer any questions anyone has on this site. Brain surgery was the best thing that ever happened to me. Not that there is anything wrong with living with seizures. I was learning to accept them while on my journey through epilepsy. I, like most, was just looking for the way out. Fortunately, my second neurologist, epileptologist and surgeon, so far, seemed to have found a way out for me. I still take my meds, and will, until two years of seizure freedom before they will put me on an EEG again to see if they can begin the tapering process. Please, if anyone has any questions or thinks I can help them in anyway, message me back. There is nothing I would like more after this experience than to pay it forward after how fortunate I have become. If anyone thinks my book may be of help to them, it is called "My Golden Mind: A Journey Through Epilepsy And Brain Surgery". It is on Amazon in paperback and kindle formats. Good luck and stay strong everyone. Jimmy Golden

Comments

I had the right temporal

Submitted by User1020 on Fri, 2018-04-20 - 20:10
I had the right temporal Lobectomy and it turned into nine brain surgery's and the loose of bone in my right side which seems like it was age 9 threw 13 and still living in and out of the hospital until 16 year old from getting an infection and the word tumor was only used by mom and dad and I was told scar on my brain and had hundreds of seizures and now I still have some seizures but we can show people how to do so so much that they can't do for the few things we can't do like a ride or a baby sitter for my seizure dog and shows them how to save hundreds of dollars by doing something and then the person can say you only have 75 % of your brain to me and I could use this my self.   

I am sorry to hear that your

Submitted by Golden mind on Fri, 2018-04-27 - 02:29
I am sorry to hear that your temporal lobectomy seemed to have had complications. I know that it is very rare. I have never heard of anyone having nine brain surgeries before. I was in ICU for several days after mine to prevent infection, so I do know that they try and be cautious of that happening. It sounds like you are hanging in there now and are doing much better if I am not mistaken? Keep it up man! We may not have a whole brain, but we can use them for a greater purpose! :-) haha

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