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Old 04-23-2014, 10:24 PM
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Wow, thanks for the information. I have known about the "lesions" for about a year or so now. I have always secretly been kind of worried about the lesions being a tumor. My sister had endometrial cancer so I guess I am a little worried about cancer with having a family history of cancer. I have heard of PET scan's being done for questionable "lesions" and to pin point where seizrures are coming from. My neurologist said "who knows you may have just been born like that" There was another abnormality chiari 1 malformation. That is where a part of the base of your skull (around where your brain stem is) is longer than normal and extends into the spinal canal. That accounts for balance and equilibrium, which I have always had a problem with. Thank you so much for the info. I see my Dr. tomorrow to switch meds I may ask him about further testing. I hope you have a great day.
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Old 04-24-2014, 10:41 AM
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Originally Posted by slchase001 View Post:
My neurologist said "who knows you may have just been born like that" to switch meds I may ask him about further testing. I hope you have a great day.
*shake head* now i can say 'wow'... that is a horrible comment. you may have just been born with a lesion? born with one aka pre-birth lesions have a high likelihood of being cortical dysplasia (type I, II, or III)... he doesn't know that? sigh. any chance you can get referred to an epileptologist?

...i hope you're on here before your appt, getting an epileptologist is key, can be live-saving really. if he's not that helpful with a referral demand it
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Old 04-24-2014, 03:17 PM
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I asked him today about doing more test for the lesions. He said that he looked at the MRI from last year and it really had not changed so it could be scar tissue. That doing more scans would just end up costing us more money and time and not really proving anything, even if it was a slow growing tumor he would not do anything different. He said the only definitive test would be a biopsy and you really cant go around biopsying peoples brain. I asked about a pet scan he said it would just be really expensive and not prove anything. He did not change my meds, he thinks I am still having simple partial seizures but I have not gotten up to 100mg yet on the lamictal. I am at 50mg for another week then up to 100 he said to wait and see what happens once I get up to 100mg then we would discuss it. I thought about an epileptologist, I do not have to have a referral to go to a specialist with my insurance and I know there is a group at Emory in Atlanta.
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