And oh my goodness am I hoping the steps (that feel backwards to me) are going to help me more forward!
We met with my new neurologist/epileptologist (finally) last Thursday. It felt like forever. We have been waiting to meet her since we moved. It was very difficult trying to get the appointment set up because the offices weren't communicating properly. BUT finally, we had the appointment. And we were relieved, and excited, and so ready.
Since my wonderful doctors at Stanford were ready to "make mom a cyborg" as my kids were saying, and give me a new option and they were the ones who said "This is the doctor you're going to see when you move", we were under the impression that my tests, my images, my everything would be sent to her and we would just kind of go from there. When we got to the office, I was prepared to tell my story all over again, I always have to, no matter which doctor I'm seeing- it can even be a gynecologist (sorry boys) but they are treating me for medical conditions, so they need to know everything. I always have to start at the beginning, no matter what. I told her how it all started. Then she asked where my images and results were. I was shocked. I had requested they be sent to her, and I called several times to make sure they got sent to her and I left several messages with the records department telling them to SEND THEM TO HER. So I don't know why she didn't have them. So other than us telling her stuff, she didn't have anything.
She is a very smart woman. The appointment went really well and I like her a lot. It's been decided that now that she has my signature on papers that she can fax to them, she can send the papers over and get my records rushed, but it would have been a better appointment if she had them beforehand. AND before she jumps onboard with the implant option, she wants her own set of data and testing. I 100% respect her for wanting her own results but I am still about 50% disappointed because I wanted something else to happen.
November 11th, I will be checking into the hospital for a video EEG... 500lb purse of wires, sticking stuff all over my head, trying to make me have seizures, we all know the drill by now. It's awful and I hate it. (Although last time my friends made it a lot more entertaining!) The nice perk this time is that the hospital is close to my house so I don't have a 3+ hour drive home added at the end of it all, so I can just come home to my kids when it's all said and done.
One round of video EEG and she wants her own MRI (which I also hate because claustrophobia). I can do this. I can do this because I know it's getting me somewhere eventually. I hope.
