Chronic Illness,  Intracranial Hypertension

My Shunt Surgery

June 7, 2018

I laid on my side on the ER bed for the fifth time that year. My husband sat across from me. The anesthesiologist sat behind me. My pressure had once again been uncontrollable, and all medications had failed. It was time for yet another spinal tap.

I honestly didn’t even care anymore. None of this was new, and nothing could possibly feel worse than what I was already feeling. I just wanted relief. As the physician inserted that 3 ½ inch needle, I did my best to breathe and pray, waiting for her to announce the opening pressure.

Instead, she grabbed the extension. The next sound within that small room was her inner thought whispered behind me, “My God.”

My opening pressure was 52 – five times more than the normal.

As a most inappropriate response, I laughed as I said, “Send a picture to my neurosurgeon.”

No one would doubt me anymore.

This Was It

I could feel the relief more and more as the physician drained my spinal fluid down to an opening pressure of 5. I was finally free from the pain again! I could go home!

As I laid there waiting for my discharge papers, contemplating where we could stop for lunch, the physician came back in. My neurologist had been informed of the procedure results. The orders were in for VP Shunt surgery the very next morning.

What emotions could I possibly feel towards this? It seems natural to have been overcome by fear, nervousness, and anxiety. I mean this was brain surgery. So why did I feel as though I was lacking emotions? All that mattered was that I needed help. Nothing was working. Wouldn’t this be something to be happy about? Had my joy counteracted my fears and left me numb?

I simply had no energy left for emotions. By the time I made it out of the ER and to my hospital room, my spinal fluid had already replenished itself. My head was pounding in such unbearable pain that when I got to the bed, I crawled in headfirst into a fetal position.

Of course I didn’t care about brain surgery. Anything – anything at all – was better than this.

My sister, who researches and plans as much as I do, wanted to know if I had actually read up on shunt surgery. But again, I simply didn’t care. This was all I had left. I couldn’t live on hospital trips and pain medication like this for the rest of my life.

June 8, 2018

Anesthesia numbed most of my memories from that morning. Isn’t it strange how a portion of our life can be erased from our mind forever?

Thankfully, I do remember the last conversation I had with my husband in the pre-op room. If there was any fear left in me at all, it was gone after he read this scripture:

When you pass through the waters, I will be with you;
And through the rivers, they shall not overflow you.
When you walk through the fire, you shall not be burned,
Nor shall the flame scorch you.
– Isaiah 43:2

I knew God was with me. I knew everything would be okay.

My last memory was of being wheeled out of the room and into surgery.

Find out more about VP Shunt Surgery here.

 I have made you and I will carry you;
    I will sustain you, and I will rescue you.

– Isaiah 46:4

Are you anticipating a shunt surgery? Please, feel free to reach out to us with any questions or concerns!
Already had your own surgery? Let us know your experience in the comments section below!

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4 Comments

  • Alexandria

    Hi, I had my first spinal tap a year ago after being diagnosed with IIH. It was triggered after I got Covid for the first time. My opening pressure was also 52. They drained me down to 25 that day & I immediately begin acetazolamide. Prior to, I lost most of my vision & suffered the intense migraines & all of the other symptoms that come along with it. A year later, I received much of my vision back thank God. I just started the process of weening off topiramate a week ago after losing 20 pounds & my pressure being stabled for some time. Today has been rough, not sure if my pressure is increasing again due to me weening of the medicine or if my body is just reacting to not having this medicine in the capacity that I have had for over a year. I’m staying hopeful but also keeping aware of my body. I’m so happy I came across your stories. Thank you so much. It’s so hard to find real life accounts of individuals who deal with this. I hope all is well.

    • April Normand

      Thank you so much for sharing your story! I’m glad you were able to find some relief, though I hope the rest comes fully and soon! I remember how alone I felt when I was first diagnosed with this. Part of the reason for starting this outreach was so that no one would have to feel like I did. We are here if you need us!

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