Mas Neuro

I brought my mom to my neurology appointment this morning.  Moral support I guess.  But mainly I wanted another set of ears in the room with me, because, let’s face it.  Brain stuff is hard for me.

I like this doctor a lot.  I met him during the 3rd hospital stay when they were trying to figure out what was causing my horrific headache after the 2nd surgery (hello?!  Is this thing ON?!)  Anyway, when he called me last month he told me I had an “abnormal EEG”, but this morning he seemed to tell me different information.  So, short-term I guess that’s GOOD, but here’s what I gathered from the EEG results:

Just because I didn’t have a seizure during the 30 minutes I was being tested, doesn’t mean I won’t possibly have one sometime in the future.

He said I have “brain irritation”, and yep.  He’s right.  I’m irritated so I’m sure my brain must be, too, haha.  I had to come clean that I wasn’t taking the anti-seizure medication consistently as he asked me to last month; and since we don’t really know what’s going on with my cerebellum, he increased the Topamax even more.  The thing that bugs me is that I haven’t ever known life post-surgery without Topamax or Gabapentin, and eventually (hopefully!) I would love to see how my brain does not on those medicines.  But, as time goes on, I’m thinking that’s off the table.  😦

You know how they say, “Accept the past”, or “Let the past go”, blah blah….well, no one actually says HOW TO DO THAT.  I’m just expected to know how to do this brain tumor stuff and let’s face it, I don’t do it well.  My lack of balance and (I’m now noticing) motor control AND ringing in my ears is starting to really take a toll on me.  Yes. I can walk and talk.  I am so thankful for that.  Very thankful.  But it’s still really hard.  I’m on this road alone and it’s very overwhelming most days.

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4 thoughts on “Mas Neuro

  1. It is really hard to realize life may not be the way we imagined, especially aspects we took for granted as givens. That is how it is for me at least! From your writing, I think you do an incredible job with how you think about and navigate everything.

  2. After a horrible time coming off of steroids (which I was on before my biopsy), I was so exhausted from being off of them that I missed two doses of my Keppra(which I was also on before my biopsy). And all I remember is falling, an EMT telling me that he had the same neuro onc as me, then waking up at my treatment facility. I apparently had 3 grand mal seizures and at least 4 focal seizures. I had never had a grand mal seizure before that. I was in 2 ambulances and 2 two different hospitals and didn’t remember any of it. That’s when I came to terms with the fact that I will likely be on Keppra or some other AED for the rest of my life.

    But we’re strong, and I know we’ll be able to manage stuff like like that!

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