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Cause of seizures
I have an appointment set up for October 1st with a new doctor who is an epileptologist at a Level 4 center in Chicago. I set up this appointment in March. I met him in July via telehealth which I don't like. I had an MRI there and they said it was Mesial Temporal Sclerosis. I called his nurse and she said my problem was something I was born with. I'm assuming she meant genetic which I would have either inherited or caused by some genetic variations which I think are rare. My parents didn't have epilepsy and I don't know that there was anyone in my family who had them. I always thought my seizures were caused by a fall I had as a young child which I guess is why the MRI showed scar tissue. I had another MRI last fall with the same results and that doctor said my seizures were due to the fall I had. How can a doctor make the determination my cause is genetic if all he has is an MRI? Don't they need to do genetic testing? I'll wait to see what he says.
I did have a febrile seizure as a child with chicken pox but my seizures didn't start until the age of 26.
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Not sure if this info is of any use but my son (16) has same diagnoses and the doctors say his seizures are caused from lack of oxygen when he was born which caused traumatic brain injury. It is kind of gives you a peace of mind to have a reason why you have seizures but we need a cure!!!!
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4 Reactions@caseybach
Hello,
“How can a doctor make the determination my cause is genetic if all he has is an MRI?
I agree with you. I think it’s nothing more than a guess and I’m not convinced it’s even an educated guess. One of my neurologist said my seizures were A result of my birth yet when I asked him to be more specific he clammed up and changed the subject. Like you I believe my seizures were caused from a head injury. A friend, so I thought, hit me in the head with a baseball bat when I was a kid. Also they believe I had a mild stroke when I was young and see if she was a curve occasionally after a stroke. Some neurologist even say if you’re going to have more seizures. The doctors at Stanford University told my parents I would have seizures the rest of my life, well surprise they were wrong. For whatever reason they stopped about nine years ago with the exception of some when I forgot my medicine and I did have and absence while driving. There are DNA tests that they can do and over 100 genes have been identified so far
@heal33
When you had your febrile seizure was that when you had the chickenpox? Also when you had it did you have a high fever. Stress is one of your worst enemies especially if you have epilepsy.
The RNS seems to become more effective in controlling seizures as time goes by.
Below is from the Nuro Pace website,
Although you should not expect seizure freedom from the RNS® System, a subset of patients report experiencing seizure-free periods.
30% of patients achieved ≥ 90% seizure reduction in the most recent 3 months*
29% of patients had at least one 6 month period with no seizures
Take care,
Jake
Jake, after you mentioned NeuroPace awhile back I emailed them and a guy named Michael called me and said he had the device and had had it many years. He was very nice and talked to me quite awhile. I don't know if he was 100% free as he mentioned watching carbs. He had sustained injuries over the years before RNS. A woman called me 2 or 3 weeks later from NeuroPace but every time I try to return her calls-- her voicemail is full and I can't leave a message. They list Northwestern, Rush and University of Chicago and I believe Loyola and Evanston NorthShore on their website as performing RNS.
I don't know if I'll get RNS. It's kind of scary. The one reason I was considering it was the fact it is reversible. It and the Vagus Nerve Stimulator which I wouldn't want after reading the side effects. They're both neurostimulation. After thinking things over I don't know that I'd want laser surgery. One doctor said I could lose my memory which means a lot to me as 4 of my relatives (including my parents) had dementia. You can't reverse laser surgery. Also, it may not be of any help to you which means you went through an irreversible surgery that didn't help you--- maybe not at all.
Yes, the febrile seizure was with the chickenpox. I guess I did have a high fever as I had to be hospitalized.
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1 ReactionI would have liked to ask those questions of my mother, unfortunately she has passed. She never mentioned anything. I don't even remember the fall I had so I must have been very young when that happened.
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1 Reaction@heal33
My Mom passed last November and she was my memory. I have no memory for the first 17 years and not many after. Due to being in numerous comas from Convulsive Status Epilepticus.
Do you have any memory or balance problems from seizures or medication?
Take care,
Jake
@heal33
I hope you keep us posted if you decide to go ahead with the RNS.
Jake
I have some problems with memory but that's been as I've gotten older. I do have a balance problem called benign positional vertigo but that has improved and I hope it stays that way. It's a problem with the ear. Happens to older people usually.
I will do that.