My name is Jessica and I am 29 years old and am diagnosed w/ Complex Partial Seizures. I am recently married to my high school sweetheart (yes it took us 11 years to finally tie the knot lol) and he is wonderful with handling my epilepsy. My seizures started when I was 15 years old and came out of nowhere. For 14 years I was told that the reason behind my seizures was unknown. The first EEGs I had showed "abnormal brain waves" but nothing more and my first MRI showed nothing. Finally last month my new neurologist requested a new MRI since I had not had one in seven years. I was very excited when he called me and said my current MRI (and the one seven years ago) showed a lesion in my left temporal lobe which is now diagnosed as cortical dysplasia. I know one would not normally be excited about having a lesion in their brain, but I am relieved to finally have an answer :lol:. I look forward to hearing other people's backgrounds and experiences with epilepsy.
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N Sperlo
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Hi Jessica. Welcome.
How do I put this to words? Good to hear about your lesion? LOL
I haven't had an MRI since I was 16 when I was diagnosed. Your situation sounds similar. I was diagnosed with absence seizures, but complex partial is a better definition, me thinks.
After reading this, I'm interested in having another MRI done since it has been over 10 years. Maybe its not an issue because I'm controlled.
Glad to hear your exciting news.
How do I put this to words? Good to hear about your lesion? LOL
I haven't had an MRI since I was 16 when I was diagnosed. Your situation sounds similar. I was diagnosed with absence seizures, but complex partial is a better definition, me thinks.
After reading this, I'm interested in having another MRI done since it has been over 10 years. Maybe its not an issue because I'm controlled.
Glad to hear your exciting news.
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WOW jess, welcome to the forum.
my eyes are huge reading your post - we are literally twins :bigsmile:
-my first seizure was also at 15, out of nowhere.
-i was told for 8 years i also was an unknown (tho that started at age 25 - at 15 i was misdiagnosed with post-traumatic stress disorder).
-my eeg's also were slightly abnormal, their words were 'tho there is a bit of slowing they're 90 per cent normal.'
-seizures got a lot worse in the past 2 years and a lesion was also finally found (new radiologist that had never done mine, did a few scans that had never been done in a number of mri's).
-was also my left temporal lobe.
-also turned out to be cortical dysplasia.
-i was also relieved, that took me out of the 70 per cent of those with epilepsy (hugs to you all) that are 'unknown.'
i'm 4.5 months post-op and 138 days seizure-free. first seizure-free christmas since 1993. pls let me know if you're looking at surgery yet... BIG hugs and i look forward to seeing your progress!
my eyes are huge reading your post - we are literally twins :bigsmile:
-my first seizure was also at 15, out of nowhere.
-i was told for 8 years i also was an unknown (tho that started at age 25 - at 15 i was misdiagnosed with post-traumatic stress disorder).
-my eeg's also were slightly abnormal, their words were 'tho there is a bit of slowing they're 90 per cent normal.'
-seizures got a lot worse in the past 2 years and a lesion was also finally found (new radiologist that had never done mine, did a few scans that had never been done in a number of mri's).
-was also my left temporal lobe.
-also turned out to be cortical dysplasia.
-i was also relieved, that took me out of the 70 per cent of those with epilepsy (hugs to you all) that are 'unknown.'
i'm 4.5 months post-op and 138 days seizure-free. first seizure-free christmas since 1993. pls let me know if you're looking at surgery yet... BIG hugs and i look forward to seeing your progress!
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Hello Jessica welcome to the board.I'm on my 22nd AED. I can't have an MRI.
I was diagnosed when I was two years old. I've had brain surgery RTL,the VNS.
I was diagnosed when I was two years old. I've had brain surgery RTL,the VNS.
qtowngirl,
Wow that is so amazing! What type of seizures do you have? I am not sure if surgery is an option for me as I have complex partial seizures and they do not "disrupt my life (doctor's words)" too much. They are not controlled very well with medication and although surgery sounds VERY scary the thought of being seizure free is amazing. I look forward to hearing back from you my seizure twin :hi5:.
Wow that is so amazing! What type of seizures do you have? I am not sure if surgery is an option for me as I have complex partial seizures and they do not "disrupt my life (doctor's words)" too much. They are not controlled very well with medication and although surgery sounds VERY scary the thought of being seizure free is amazing. I look forward to hearing back from you my seizure twin :hi5:.
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hi sweetie
in my opinion (through both personal experience and research), a doctor doesn't tell you how much they are/aren't disrupting our lives, we tell them. tho i've only had a few c.p.'s they've been very disruptive!
most importantly is the meds; if they're not offering proper sz control then it's time to look at going on something else - why he isn't recommending that and instead saying your life's not too bad is ridiculous.
mine are simple partials and tonic clonics; were simples for 9.5 years before having my first grand mal. tho i didn't know it was e until the 2nd grand mal and diagnosis (age 15 to 25 i was told it was 'post traumatic stress disorder').
long story short none of it really matters, tho proper diagnosis in my teens would have (likely) caused way less seizures as an adult, and possibly the root reason being found earlier... it wouldn't have changed the fact i needed surgery. like you, we had a lesion since in our mom's womb, and very more likely than not, meds won't work in that situation. tried 4 and no go.
-carbamazepine helps with t.c.'s but doesn't touch partials (which are WAY worse for me).
-topamax had me seizure-free 10 months then came back with a vengeance, was worse, and on halloween just for fun.
-lamotrigine is kind of a 'whatever' for me. i don't have any 'more' seizures than usual, but not really less either.
-vimpat (BAD) lowered my simples somewhat but not the t.c.'s, and it's side effects were way too much to take, not worth it.
i'm so glad my surgery is working, and can't suggest enough to demand proper testing. it's not a normal doctor decision to leave a lesion in, as research shows. they only don't want to touch if it's too deep and/or in a place where we'd likely be impaired for life, such as language and mental capacity.
i'm going to post a bunch of threads i found, right on our subject. to start your neuro/e team have to test further, such as a 24-hour eeg hospital stay (can range from 4 days to 3 weeks, mine was 2.5 wks). that's how they confirm whether you're a candidate or not. HUGS!
talley_valley
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Hi Jess!
My 9 year old daughter had been diagnosed with the same diagnosis. Her condition is also not very well controlled with medication, and on top of that we are about to hit puberty and hormonal shifts as well (Yikes!). We have been told by a specialist that she is a perfect candidate for surgery should we reach that point. I would recommend researching it! Cortical Dysplasia produces an extra thickness that the electrical signals have a problem traveling threw, surgery removes that area and allows the signals to travel more efficiently. How you find a doctor to help you control your condition to the level of control that YOU require. Good luck!
My 9 year old daughter had been diagnosed with the same diagnosis. Her condition is also not very well controlled with medication, and on top of that we are about to hit puberty and hormonal shifts as well (Yikes!). We have been told by a specialist that she is a perfect candidate for surgery should we reach that point. I would recommend researching it! Cortical Dysplasia produces an extra thickness that the electrical signals have a problem traveling threw, surgery removes that area and allows the signals to travel more efficiently. How you find a doctor to help you control your condition to the level of control that YOU require. Good luck!
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welcome talley valley 
big hugs to your daughter, what a trooper. i just had my lesion from cortical dysplasia removed in august (april will be 20 years with e for me, lesion only found in 2011). day 149 seizure-free today! if you have any questions or wanna chat pm me anytime, and have a wonderful new year's!!
big hugs to your daughter, what a trooper. i just had my lesion from cortical dysplasia removed in august (april will be 20 years with e for me, lesion only found in 2011). day 149 seizure-free today! if you have any questions or wanna chat pm me anytime, and have a wonderful new year's!!