Community Forum Archive
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New to Site
Sat, 11/27/2004 - 11:19Hi everyone. Found your site by accident as I was searching for information on a surgery that I might be having.
I was diagnosed with a seizure disorder after a car accident I was in 4 1/2 yrs ago. I also have a brain injury in which I have alot of cognitive problems. So having the 2 together is sometimes for my family and myself really difficult especially since they don't have the seizures under control.
I am on my 4th neuro who I will be staying with since he is with an Epilepsy Center through a University Hospital and is an Epileptologists. None of the others I think really knew what they were doing and were just giving me meds to give me meds and the last one told me that eventually the seizures would go away since the newest Video EEG monitoring came back negative 2 days later I ended up in the ER with my first Grand Mal. Needless to say that is when I went to get a second opinion and that dr. told me he really didn't know if I was having seizures and if I was what kind they were and wanted me to go see this Epileptologists and so this is where I am staying. I thank god everyday for the thruthfulness of that dr. I wish there were more like him.
I am now considering having a neurostimulator placed and right now I have to be re-tested with those horrible neuropsychology testing. I don't know if any of you have had those tests but they give your migraines migraines don't they. If I am not approved for the neurostimulator than I will definitely be having the VNS put in.
It has been a long hard road of decisions for me and it took alot of soul searching to reach this point, but my husband and I deceided along with my dr after alot of my tests came back that this would be my best options. I have what is called Post Traumatic Epilepsy. I don't know if anyone else here has it and alot of the different areas of my brain have been effected from the acccident.
I hope toget to know all of you. I also feel for the people where I saw about the restraints. When I read that post I was so upset. When I had my grand mal all I could think was thank god I had my husband and he knew. I came too and I refused the paramedics and had the first aid take me. I do know that most states have a First Aid Council and you can make them aware by informing them of the medical issues and I would send this information to them so that they are aware of it.
Thank you for letting me introduce myself.
Jani