Hydrocephalus: The pressure test

Hydrocephalus: The pressure test

ICP (Intracranial Pressure) Monitoring, something I’ve heard about before, seen other Hydro warriors go through but, hadn’t experienced for myself until last week.

I went through the normal motions and feelings before surgery.  Knowing that a piece of fibre optic transducer sensor would be going through my brain and resting inside one of the ventricles, was probably as far as my knowledge would allow me to go.

This should give you a bit of context when it comes to what the pressure should be:

“Intracranial pressure (ICP) is the pressure inside the skull and thus in the brain tissue and cerebrospinal fluid (CSF).  ICP is measured in millimetres of mercury (mmHg) and, at rest, is normally 7–15 mmHg for a supine adult.[1] The body has various mechanisms by which it keeps the ICP stable, with CSF pressures varying by about 1 mmHg in normal adults through shifts in production and absorption of CSF.  Changes in ICP are attributed to volume changes in one or more of the constituents contained in the cranium.  CSF pressure has been shown to be influenced by abrupt changes in intrathoracic pressure during coughing (intra-abdominal pressure), Valsalva manoeuvre, and communication with the vasculature (venous and arterial systems).

Intracranial hypertension, commonly abbreviated IH, IICP or raised ICP, is an elevation of the pressure in the cranium.  ICP is normally 7–15 mm Hg; at 20–25 mm Hg, the upper limit of normal, treatment to reduce ICP may be needed.[2]

** Extracted from here **

What makes me wonder:

A few years back, I had a lumbar puncture done with the pressure recorded at 20mmHg – Not high enough to warrant surgery at the time.  (Somehow that seems contradictory to the numbers given above).  I suppose each surgeon has their own limit and regard of what is high as opposed to what is not.

Things I experienced differently from what I anticipated:

  • It didn’t hurt when I woke up.  The heavy headed feeling I remember after my first operation was non-existent.
  • I wasn’t as confused as I thought I’d be, wanting to see my husband.
  • I didn’t have a bolt sticking out of my head either, just a thin yellow cable connected to the ICP Monitor which in turn was connected to a laptop plotting a chart.
  • When the time came to remove the cable, the surgeon loosened 3 stitches and gently pulled it out, I didn’t feel a thing aside from the stitches being cut.
  • To my surprise, there wasn’t anything at the other end of the cable either.
  • I have two incisions on my head with a small piece of hair shaven off.  The original burr hole has been used and another incision created to lead the cable out under my scalp.

  • I am yet to have the main incision stitches removed in a weeks time.
  • I was able to move around freely, provided I took my “doggie” for a walk.  A little UPS connected to the monitor and laptop provided backup power after being disconnected, allowing me to move around.

  • I was given a piece of paper and a pen to keep a headache diary, noting where the pain was, at what time, the level of pain and the reading on the monitor at that point in time.
  • Being in different positions helped as well to get different pressure readings e.g sitting up, lying down, walking etc.
  • I found myself explaining to every nurse who came on shift how the machine worked, why it was connected to my head, what condition I have and how it came to be.  (An educational experience indeed).

What I’m thankful for:

  • Friends who go above and beyond in their generosity of supporting you when you need it most.
  • A surgeon who thinks outside the box.  We had a quick discussion before the operation and he said there’s a possibility of “a degree of absorption issue causing the symptoms”.  Which is why this procedure is beneficial to do because it would highlight any problems.
  • He agreed to send me a printout of the test results for future use/consultations as well as sending me a copy of his report to my GP.  Uttering the words “It’ll give you peace of mind, so you can move forward”.  (A human after all the muppets I’ve had to deal with till now).
  • He strongly suspects I may not need surgery at this point in time but he needs to look at the results first.
  • Being able to wash my hair, getting rid of the bloody reminder of what I’ve just been through, felt like absolute heaven.
  • And, sleeping in my own bed…

The anticipation:

  • Since he’s going on leave this week, I’ll have to patiently wait for him to analyse the results and confirm his statement of “no further need for surgery”.
  • If, however, surgery is needed, I face having a VP shunt placed (non-programmable because he believes the programmable shunts need too much attention and causes issues as they self-adjust, especially after a CT).  This is regardless of my ETV being open and, “if there is an absorption issue, the ETV is clearly not enough as it’s confirmed open”.
  • If surgery isn’t needed, I’m left at the mercy of the same doctors who refused to help me any further and instead labelled me “depressed”.  (I’ll cross that bridge when we get there)

Recovery:

I’m my own worst enemy.  After an almost 8 hour drive the day after discharge from the hospital, I went to work the next day.  I don’t think this was a very smart move on my part as my body, especially my brain, feels tired.  Leaving early, I’ll return when I feel stronger.

On a lighter note:

  • Since I wasn’t really eating, I lost 8kgs over the last 3 weeks.  My eating habits were a bit shocking and left me somewhat constipated.  The transducer cable is extremely sensitive, something which both surprised and amused me a bit.  Each time I struggled just to pass gas, it would cause a spike.
  • On the last day, after being pumped with laxatives over the last 3 days, I finally felt the need to use the toilet but it wasn’t easy.  I was reminded of a surgeon once telling me that Codeine is good for pain but causes constipation.  “And you don’t need that kind of pressure” he ended off saying, as we laughed.  Funny as it was at the time, it finally made sense as I watched the pressure shoot past 40 mmHg!  Now I knew and understood exactly what he meant!

I am not brave, I am not strong…I’m just doing the best I can with the situation I’m in.  Until you actually experience something yourself, there’s just no way for you to know any better.

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!

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