Howdy Hydrocephalus

Understanding my unique gyroscope

Foothills Diverted

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I am happy that I didn’t have to make another trip to Foothills Hospital early this morning.  Two days ago, I had flu-like symptoms that can mimic a complication.  I was re-assured the next day when my youngest was experiencing the same thing.  Don’t get me wrong, I never wish sickness on anyone, but it was it did make me feel better knowing that I wasn’t experiencing a complication. That was until last night around 9:30pm, when I felt that I was in an elevator falling quickly and I was sitting on the couch watching trashy TV.

I got up and keeping my balance was like being on a pirate ship during a storm, so it was not easy.  I went to the bathroom to brush my teeth and kept dropping everything I was trying to pick up.  I am trying not to panic – I just want to go to bed and sleep.  Two hours later we are in emergency.  My body has not settled down.  My head feels like it is being held up on a toothpick & my world is not spinning, but is very unstable.  I keep losing balance to the right.  Emergency appears to be fairly quiet and I still wait for an hour before the emerg doc to see me.  this is what I look like.  I had Chris take a picture because I couldn’t keep my eyes open, couldn’t concentrate and my blood pressure which is normally around 109/70 was as high as 158/90 (damn BP monitor hurt every time it too my pressure).

Feeling like I could just go out and party

The Doc is the one who in a previous visit shoved something so hard up my nose it made it bleed and told me that there was nothing wrong with me.  That it was sinuses and should not be in emergency but to see my GP instead.  I was there after having a major pain, pressure to my head and clear fluid come from my nose. Nice now I know why I waited an hour, the dude doesn’t want to see me.  So he is all like “I know you…you have congenital hydrocephalus…did you know all your life…etc….”  Chris is ready to pummel him.  Chris explains everything.  I did say that “he did see me and not treat me very well”.

We have to rule out the big things: brain infection, meningitis, brain bleed, potential of ETV closure or partial closure.  So I get blood drawn, Have another CT scan (an added 146 days of radiation to my body).  So I am clear of the two.  The doc doesn’t really know about the ETV stuff.  He comes in and admits that five doctors had all the information in front of them and didn’t put the puzzle pieces together.  The doc is all apologetic and nervous now – fucker!     I am given Tylenol and some anti-puking medicine.  After about an hour, my world is no longer falling like an elevator or being on a ship on rough seas, but I am a little unstable.

There is no info on the system about what to do if I am experiencing symptoms.  Chris says that I am supposed be transported to Foothills hospital, but I am not too sure if I should go.  We agree to go home and call the Hydrocephalus clinic.  If I am experiencing a partial closure, it is not harm me right away; I am still getting flow.  The doc looked at my eyes and saw pulsating veins.  So we call the clinic the next day and the doc there thinks it could just be my body acting weird because of getting used to having CSF flowing and having fighting a virus may have thrown my machine for a loop.  But he said to continue to monitor.  If symptoms get worse then drive to Foothills.  As much as I like the amazing nurses, doctors and quality of care at Foothills, I do not want to make a second appearance there.

Today has been a bed day…I hate daytime TV…it sucks!  I need to go find my crafty crap –  if only I have the energy to go downstairs to get it…can you say stir crazy.


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