Let it freaking go

Yesterday I had an appointment with a new neurologist.

Now, before I write about my TWO HOUR wasted appointment, let me preface this by saying, “NO ONE TOLD ME THIS DOCTOR WAS ONLY SUBBING FOR ONE WEEK.”  I would not have wasted his time, OR MINE, by seeing him yesterday if anyone had told me this.  My time is valuable, whether you think it is or isn’t.

But, no.  Does anything medical run smoothly in my life?  Again, no.

Does most anyone do their jobs at the clinics I attend?  (Well, some do; I will say this.)

I am still so mad about yesterday and it’s been a whole 24 hours since it happened.

So, I am waiting in the exam room and in walks this doctor.  Dr. A?  I don’t even remember his name.  Seriously.  He sits in front of me and starts to ask me a few questions.  I can tell by his questions that he didn’t look at my records.  He continues to ask some basic headache questions, and I interrupt him.  “I have 2 brain tumors.”  And, he kind of reels back, in shock.  I told him I have “Lhermitte-duclos disease”.

HIM:  “What?”

ME:  “I don’t know if I pronounced it properly.  I’ll say it again.  Lhermitte-duclos disease.”

HIM:  “Is that like Cowden Syndrome?”

Oh my freaking gosh.  I cannot.  Seriously.  I freaking CANNOT.  I don’t care if you’ve never heard of it.  I don’t care if you never saw it in your training.  I am an established patient at this clinic.  YOU LOOK AT MY FREAKING RECORDS BEFORE YOU SIT DOWN WITH ME.

I wanted to clobber him.

He then asks about my symptoms: I tell him about the headaches, the dizziness, my hyper-sensitive hearing, my decrease in my fine-motor skills, etc.  And, we go through them one by one.  He’s firing questions at me, and I literally feel like I am before a firing squad.  I have NEVER experienced anything like this before.  And, trust me.  I have been around the block.  I have seen many, many, doctors.  This one takes the damn cake.

When he’s finally finished barraging me with questions, the first thing he says to me is, “You have migraines.”  My response, “No duh.”

Well, not really.  But, I wish it had been.

I wish I would have said, “Do you mean migraines as in something different from headaches post-craniotomy?”

Then he goes on and on about changing my meds, that I have carpal tunnel syndrome, mindfulness, and all this other crap.  I was expected to have a STAT EMG  in like 2 weeks.  But guess what?  I have a medical appointment already.  And, I cannot change that appointment because it will be weeks before I can be seen there again.  You know how THIS clinic thinks they are GOD and all revolves around them?  Well, guess what.  Every other clinic I go to think the same thing.  And I have learned that once an appointment is set, it’s set.  I cannot change the appointment I have previously scheduled.  This decision of mine DID NOT go over well here.  But, sorry Felicia.  What do you expect me to do?  I will not sacrifice the rest of my medical status for you.  Period.

I would totally be on board with all of this.  But, here’s the kicker:  He wants all these changes but then I HAVE NO NEUROLOGIST AFTER HIM TO FOLLOW UP WITH!  What if I have withdrawals coming off the Topamax?  What if I can’t tolerate the new meds?  WHAT KIND OF DOCTOR makes these HUGE changes and then would hang me out to dry?  This office hopes to get a new neurologist sometime in September.

And you know what?  I hope so, too.



My week

All in all, this week was pretty typical for my chronic medical situation. I wonder if there will ever be any stability with Cowden syndrome and Lhermitte-duclos Disease?

Monday:  I had an appointment for a PET scan and a PEM scan.  I wasn’t clear exactly what was going on when I got there because I thought I was just having a PEM scan, which I affectionately call a “glorified mammogram”.  I arrived at 8:30 and was shown to a room that had a recliner in it.  I thought, “Hmmm.  This is already unlike any other medical thing I’ve ever had!” and the technician gave me the instructions.  First, she had to check my sugar (thankfully I had great veins that morning!) and it was 102.  I asked her if that was high, and she said anxiety can make it go high but it wasn’t too bad.  Whew.  Next, she brought in the radioactive sugar and said that it was time.  Dun, dun, dunnnnnn.  I didn’t even have a clue what that meant!  Would I feel anything?  Would it hurt?  She put it in the IV and then said I couldn’t move, to rest on the recliner.  No talking!  No playing on my phone, no reading, no nothing.  Just relax.  BUT GUESS WHAT HAPPENED?  I totally had to go to the freaking bathroom.  I could not relax for 30 minutes at all because I was worried.  Plain worried.  The technician got a bit snotty when I told her I needed to go (her response was, ‘Well, I’ll give you permission if you must, but we can’t wait because the sugar is already decaying’…Whut the freak?)  Anyway, I somehow made it through the 30 minutes and when she came back into the room and said, “You can move now” it took all my restraint to not r u n to the bathroom.  #RealTalk.

After all this, I had to wait another 30 minutes to percolate, I guess.  🙂  Was finally taken into the PET CT, which wasn’t a big thing because thanks to Chuck (what I used to call the brain tumor), I’ve had plenty of them.  Since I was still radioactive right after this procedure was the PEM scan, but can you believe the test was done at the end of a hallway?  There were people (read: a MAN!) walking into another room so he could totally see me taking my Dairy Queens out!  There was this accordion barrier thing to “shield” me but it was still totally a wonky set up.  I had to endure 16 minutes of this on each “side”.  Weird.  Are you with me?  (As it stands right now, I haven’t heard from the surgeon.  No news is good news, right?)

When I got home I had to stay away from my nephews for 4+ hours, then as I was detoxing I got 2 huge migraines.  Just crazy talk, you know?

Wednesday:  My neurologist has been on medical leave.  Not a big deal to me, because for the most part I’ve been stable.  Ha.  But I have weaned off the gabapentin and lowered the topamax because I really wanted to know what life is like not on those meds.  I knew the gabapentin was for pain and the topamax was for migraines.  And, I hadn’t really been having either (for the most part) and since Dr. D was on leave, I just was going to take care of my biz like the champ that I am!

I called the office on Tuesday and left a message so it could be documented that I had discontinued the medication.  Yesterday morning I get a call asking if I can come in at 2 PM to see the neurologist they have filling in?  Um, sure.  I guess.  When I met this doctor, come to find out she knew the doctor who performed my craniotomies!  That was kind of a nice thing.  But, she told me some things that were a tad disconcerting:  I did have an abnormal EEG after all (I could never get a straight answer from Dr. D about this), and I must take the Topamax twice a day because I am at risk for seizures because of the scar tissue in my brain.  Once a day (I had taken it just at night) is not enough.

Today:  I have PT in a few hours.  I’m nervous.  I wonder if it’s going to be awkward like it was a few weeks ago.  Let’s hope not.  I hope we can continue to have a good working relationship.

OK dear readers, this was my week.  How was yours?

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.