Wrapping my brain around — well, my brain

I’ve been having some weird issues over the past three months.

My friend J says I’m good at listening to my body and paying attention to what is going on.  Sadly, I think I’m reacting later than I should have.

Late August – I started having some neck pain and some episodes.  My head would feel “full” and would throb.  A few minutes later, it would pass and everything would be fine. I figured it was sinuses or an ear infection.

I hate hip surgery October 1, so that took precedence over some little head thing.  I was on crutches and seeing physical therapy three days a week and trying to keep everything together!  But the episodes continued and were starting to get worse.

When I would stand up, I suddenly would feel unsteady — not dizzy.  I just felt like I couldn’t walk straight or keep balance.  So I would sit back down or work through it if I was out somewhere.  That is NOT easy to do.  Because along with that came double vision.  I was walking through the grocery store last week without the ability to feel sure of my footing and everything looking like twice what it was.  UGH.

It is imperative in my public life that I look like I have my shit together.  Always.  If you saw me that day at Meijer, I would have put on quite the show for you.  You’d never know that all I wanted to do was curl up in my bed with my eyes closed until it passed.  But I stuck it through because that’s me.

Back to the story — Let’s look at the timeline now.

  • September – episodes of throbbing in the head and occasional unsteadiness upon standing
  • October – same episodes but now with double vision and constant pain in my lower back and neck
  • Late October – go see my General Practitioner Dr. K.  We try amoxicillan though probably not it
  • 10 days later, Dr. K says go see an Ear, Nose and Throat.  He says – you don’t have any issues with me, see a neurologist.
  • November – meet Dr. M the neurologist who orders two MRIs – one of my brain and one of my neck.  To see what is going on.  The brain is a secondary scan because sometimes there are lesions due to cancer.
  • November 5 and 7th – MRI are done
  • November 8 Dr. M the neurologist calls.

Let’s talk about that phone call:

Dr. M “I have your results and I would like to see you to discuss them.”

J “OK, but you can tell me something now.”

Dr. M “No, I really need to see you to discuss.  I have an opening Tuesday at 3”

(It’s Saturday at 1:00 when we are talking.)

J “Yeah, I don’t work like that.  Tell you what, give me your top three ideas.”

Dr. M “You really want to hear something over the phone?”

J “Yes.  I need something.  I cannot wait until Tuesday and come in cold.  I like to have questions prepared.”

Dr. M “Ok.  There are lesions on your brain.  So I will see you Tuesday.”

So there it was.  Brain lesions.  What is a brain lesion?  Why was it there? How did it get there?  What do you do?

I know — lots of questions, and not a lot of information.  And so I spent my weekend waiting.  I also contacted Sue Ward.

Sue doesn’t work for the American Cancer Society anymore.  She works for the American Brain Tumor Association now.  How perfect is that????

Sue got me hooked up with some great information.  Excellent resources.

And I’m going to leave you in this state.  Unknowing…..Wondering…..

7 thoughts on “Wrapping my brain around — well, my brain

  1. I’m sorry to hear this Jennifer. If we had answers, we wouldn’t need to be asking questions because this filthy, disgusting disease would no longer be surrounding us. Keep praying.

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