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Junior Member
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Join Date: Dec 2007
Location: St. Louis MO
Posts: 22
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Junior Member
Join Date: Dec 2007
Location: St. Louis MO
Posts: 22
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I'm new and have lots of questions!!
 Hello everyone !! I must say as I have lurked in the corners of this forum for the last month, I have learned a tremendous amount, but have also been left with many unanswered questions. Before I continue I want everyone to know that due to insurance issues I am currently unable to see a nuero, and my former nuero surgeon will not treat me any longer.
With that said, I would like to give everyone a history ( I will try to keep it brief) In May of 2006 I experienced (to my knowledge) my first gm seizures. There were two which landed me in the emergency room, and the nuerologist came back with a diagnosis of Arteriovenous Malformation. Without going into it to deep, we opted for a traditional craniotonomy after emobolzation. It was completed by July 2006. I was taking dilantin at that time 100 mg. The doctors indicated the surgery could not have went better the avm was gone, and that I would always be at risk for seizures but good chance I would never experience another. I blindly believed them. I opted to quit taking my dilantin when the prescription ran out, (how stupid I realize now) and was seizure free for 17 months. I even got pregnant and had my sixth child....(another Huge mistake given my medical condition, but NO doctor ever told me this was not a good idea.) The delivery was awful, as they would not let me participate for fear of a brain hemorage, and my husband and myself argued, the avm is gone, there is no risk...HOW uninformed we were. The baby arrived 11-10-07...healthy and exhausted. we went home, feeling fantastic, and the first week with him was wonderful..(fyi, i was breastfeeding, still no dr spoke up and warned me of anything) The Saturday after we got home, I developed this unreal headache pounding pressure right in my forehead..I was in agony. Worst headache ever. I went to bed and the same headache woke me up at 11 am on sunday. I got up and got on the computer to do my homework for my college class...and according to my odest son was very distracted and cranky. I was trying to work on my homework, and it was not going well, and suddenly I felt that rising feeling in the pit of my stomach, that I felt briefly 17 months prior. The next thing I know, I am climbing up in bed with my husband and one week old baby, saying I think I just had a seizure. Then I fell asleep. At some point I had someone get me the laptop, and I typed in tonic clonic seizures, like I was actually going to be able to make sense of what I was attempting to read. I called my neighbor trying to make sense of what was happening, as I had no idea about the time frame, nor what day it was. I called my mom, and told her to come to my house as soon as possible, b/c I was having seizures. At this point I was in tears, and my husband had gotten done with his shower, and I looked at him, and in a very serious voice told him I am definite getting ready to have another seizure. Apparently I was holding my infant, but I was sitting in the middle of my bed, I fell over to the side, and the baby slid down between my legs. To make a long story short, the baby was fine, and I ended up in the hospital, and the medical professionals recorded six grand mal seizures. I dont remember any of it. Nothing. In fact, I was paralyzed for the next 2 and a half days on my right side, and resembled a stroke victim more than a seizure suffer slurred incoherent speech, and the drooping face, and then wed, i started to recover. I came home on Thanksgiving day, and still there are so many holes in my memory. I have to ask the same questions over and over, bc i dont remember asking the questions nor the answers. I cant find the right words, I am suffering from severe to very mild headaches. Poor balance, and when I lay down sometimes the world just spins, eyes open or shut. At any rate, I have been doing a lot of research and realize I have possibly had alot of warning signs, which I will discuss in a separte post as this one is getting quite long. However, my nuerosurgeon at least had another mri done for me and told me everything looked the same as it did after my surgery, including the tumor. Which he NEVER told me about. It is a 1 cm meningioma on the same side as the avm (which he removed)and is not in the actual brain tissue nor is it pressing on it so he says. My question is why didnt he take it out when he did the avm surgery?? Im a little p/o about that.
I Am open to any suggestions, comments or anything anyone has to say...and I will be posting more about my situation in the next few days, ecspecially about previous and current symptoms. I am wondering if it is possible I have been having some kind of seizure for years and not just realizing it.
I hope to make friends and be just as supportive as hope you all will be..
THanks for your time...
Amanda
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If I had to have a tumor this one is the best kind!!!
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12-17-2007, 10:18 PM
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