Hydrocephalus: When the thought of brain surgery “excites” you

Hydrocephalus: When the thought of brain surgery “excites” you

You’re probably wondering if I’ve completely lost my mind or how I can say that, well that’s because it’s only one of the emotions I feel right now – along with fear and anxiety.  It may not be an ETV or Shunt surgery but it’s brain surgery nonetheless.  The procedure I’ll be having is called ICP Monitoring which can be done in 1 of 3 ways.  This is what I’m facing:

INTRAVENTRICULAR CATHETER

The intraventricular catheter is the most accurate monitoring method.

To insert an intraventricular catheter, a hole is drilled through the skull. The catheter is inserted through the brain into the lateral ventricle. This area of the brain contains liquid (cerebrospinal fluid or CSF) that protects the brain and spinal cord.

The intraventricular catheter can also be used to drain fluid out through the catheter.

The catheter may be hard to get into place when the intracranial pressure is high.

**Referenced from https://medlineplus.gov/ency/article/003411.htm

Surgery is booked for Thursday, 23 August 2018.

If the pressure inside my head is “fine” I’ll be discharged after 3 nights in the hospital.  If it’s NOT, I’m looking at having more surgery to redo my ETV (We’ll cross that bridge IF and WHEN we get there).

A few weeks back, I jokingly said to a few friends that if I were to have my next surgery, I’d call it Mambo No 5 (like the song).  Little did I know, it was just around the corner. (Maybe I should’ve played the lottery too!)

While I patiently wait for Thursday to come, I still wake up with pain and as I’m writing this, I have a killer headache.  The “nice” thing about having it this time though, is the fact that I’m not scared or concerned about what to do.  At this point, I’m doing all I can to NOT end up on a table with the very doctors who refused to help me.  Knowing that I don’t have to go to the local hospital Emergency Department for “help”, is a feeling I just cannot describe.  Relieved, psyched, elated and thankful would probably fit in there somewhere.

I just need to hang in there a few more days (some days it feels impossible but…).  2 days of pushing through the new job I started a little over a month ago and giving it my best – then I can rest (physically and mentally).  I am happy beyond words and feel even more blessed because my surgery has been approved by our insurance, so BIG sigh of relief!

So many people tell me “Don’t worry, you’ll be fine!”.  I’m not saying they’re wrong and I know they mean well but…it’s easier said than done (and no, I’m not being negative).  There’s risk with any surgery and that fact does not escape me.  I’d prefer they didn’t say anything at all…

I’m fearful and anxious because just over 8 years ago when I went in search of help in another city, to get an opinion (much like now), I ended up having 3 surgeries over 3 days (unplanned & emergency).  Thankfully this time, I’m not pregnant and don’t have the stress of putting my unborn child through that again.  I only have myself to worry about.  I know it may not end the same way but, I’m human and, having a bad experience like that before…let’s just say it unnerves me a bit.  Also, I know that waking up from this kind of surgery can be very stressful and frightening.  Not having someone there when I wake up, someone I know…it’s going to be interesting.

BUT (note the capital letters) – I’ve waited so long to just be heard, taken seriously when I say “something doesn’t feel right” and getting a step closer in the right direction, that I know what’s more important right now. These fears are somehow less significant because of the “euphoria and excitement” I feel on top of everything else.

So yes, brain surgery may be a scary thing to face but, given the right circumstances, it certainly can be one that makes you feel like you want to do the happy dance 💃🏽

Have your challenges led you down the same path too?  OR  If you are the one facing this same challenge, alongside me, take comfort in knowing that you are not alone and more importantly, read the caption in todays featured image at the top of this post.

#WeAreHydroStrong

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

2 Comments

  • grizz1ybear

    August 18, 2018 at 11:58 am Reply

    Yes I also feel ICP Monitoring is Brain Surgery also, always very scary! Prayers coming your way. Hope they can figure out what the problem is? My last ICP Test found I have Zero to Low Pressure Hydrocephalus. I was latter fitted with a shunt for that type and it has worked since. ( about 3 years ago ). All the testing that has been done since have been good. Even though I still live with the daily pain. Not sure if that is from all the Scar tissues from the many Brain Surgeries, or just the fact my head just doesn’t like having a piece of plastic stuck into n my noodle? At least I have avoided surgeries.
    Best of luck!

    • Skyewaters

      August 18, 2018 at 8:03 pm Reply

      Thanks for that. I’m hopeful it will reveal all we need to know. 🙏🏾💙

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