Haemorrhage during brain surgery has lasting effects…

Haemorrhage during brain surgery has lasting effects…

You look at me and see the same person but, on the inside, I’m existing in a living nightmare..!

C. A. Marriday

A repeat ETV (Endoscopic Third Ventriculostomy), performed on 4 May 2021, brain surgery #6, resulted in a haemorrhage during surgery. The effects of which have only escalated and is still ongoing. (Reading that post makes me realise it’s only gotten worse…). I have slowly been trying to piece it all together…

When a hemorrhage interrupts blood flow around or inside the brain, depriving it of oxygen for more than three or four minutes, the brain cells die. The affected nerve cells and the related functions they control are damaged as well.
A brain bleed causes brain damage and yes, they can be life-threatening. The seriousness and outcome of a brain bleed depends on its cause, location inside the skull, size of the bleed, the amount of time that passes between the bleed and treatment, your age and overall health. Once brain cells die, they do not regenerate. Damage can be severe and result in physical, mental, and task-based disability.

You can read more about it here.

There are a few lasting effects following a brain bleed. These are the most noticeable to me:

  • Confusion, memory loss or poor judgment.
  • Personality change and/or emotional problems.
  • Headache (nothing new with this one!)
  • Struggling with words i.e. Aphasia

Often those with aphasia may have a difficulty with naming objects, so they might use words such as thing or point at the objects. When asked to name a pencil they may say it is a “thing used to write”.

This is a BIG lightbulb moment for me personally. It provides validation. I used to beat myself up so many times, hurtfully uttering; “What’s wrong with me..?”, in frustration. OR, I’ve dismissed it saying; “My brain is glitching”. Also, my family usually make fun of me because I ALWAYS say “thing”! Now I know why…

Saying it’s a struggle, is putting it mildly. Truth be told, panic mode has been activated for a while now. I have been left to try and figure all of this out on my own, with no support from anyone. No warning or talk about what to expect. I think this has made it harder. If I had known, I may have accepted it sooner and, it would definitely have been a kinder ride on this hellish infinite roller coaster!

I have expressed my concerns to others however, it has been met with responses that have been less than ideal or useful to me. Some have even been downright hurtful…

I’ve been left feeling:

Isolated. Lonely. Anxious. And, the biggest question I’m yet to figure out; “What the F*ck do I do now?” (Pardon my French).

I can’t even begin to describe my emotional, mental and physical state to you. I have been dipping in and out of depression, feeling utterly helpless – not to mention useless! On my way up and out of that deep, dark place, I FULLY know that I am neither of these.

I am a problem solver. I need to know the answer to the problem or, at the very least, have a backup in place, else I can’t move forward. However, for months, I have been trying to move my train of thought forward. Instead, I am stuck! I’m talking concrete around my feet that’s set because I couldn’t get away quick enough! This is a seriously messed up situation I find myself in. I pray daily for a lottery win just so that I don’t have to work, and feel all this financial pressure. The burden of having to provide for myself and my family, weighs heavy on my shoulders. Yes, money is the one thing that I feel will set me free, to a point where I feel sane. At the very least, it’ll give me time and space to breathe, and figure out my next move, allowing for the snails pace I’ve been thrust into.

The current state of my brain has taken “being like a duck”, to a whole other dimension, not even level!

I suppose the “joke” my husband made when I tried to explain that I have literally lost some brain cells, a few weeks ago, is his way of trying to “help”.

You didn’t use all of them anyway”. Whether he has a point, or not, I fail to see the funny side of it but, forcefully do. A case of if I don’t laugh, I’ll cry (I’ve done enough of that!).

VENT: I have become one angry person because of life. The saying “life happens for you” just does not compute in my (literally) messed up brain. Maybe it will reveal itself in time to come but, right now, I just don’t see it.

PS. This post has been written over a 6-month period, if not longer. Every chance I get, I add my thoughts. While I have words left inside of me, I’ll continue to spread awareness about Hydrocephalus!

4 Comments

  • Anonymous

    February 10, 2023 at 10:04 pm Reply

    I was born with hydrocephalus in 1968 Back then they weren’t sure at all what chance I would have.

    At birth, the doctors told my parents that my brain had been badly “squished” against my skull causing damage to the cells. They didn’t think I’d survive past 5 or 6 and would probably be be a vegetable.

    I have beaten the odds in many ways but
    have experienced all of the emotions and feelings explained in your vent.

    My parents knew they were taking a big chance with me and I’m so thankful for their love, strength and courage.

    I’ve led a fairly normal life with a few interruptions like shunt malfunctions, poor balance, eye problems, seizures, anxiety and depression but I know things could have been so much worse.

    On the outside I look like someone without a worry in the world but on the inside is a person who can’t always find the strength or gumption to get up every day.

    Because I’ve been dealing with this for 54 years I’ve learned along the way to pretty much adapt to things.StillI I don’t always find the jokes people make about my situation funny at all.

    For a really long time I was so upset about things I couldn’t do to be like everybody else. I even felt like I was letting my family down when there was something I couldn’t do.

    I want to stress that the one with THAT issue was ME. My parents had been given such a bleak outlook on me that all the little things people tend to take for granted just excited the daylights out of my parents. When I bought my first house my mom and I went for a walk and she broke down in tears.

    She said to me, “I’m so happy for you because we never imagined you’d come this far.”

    • Skyewaters

      February 10, 2023 at 10:10 pm Reply

      I can certainly understand your mom breaking down. Tears of joy, no doubt. As parents we only what’s best for our children.
      Thank you for commenting and validating what I have written about, I appreciate it?

  • Robert Myers

    February 10, 2023 at 3:13 pm Reply

    Your post hit me especially hard. I had VP shunt replacement surgery in August 2018. I was not the same person after surgery. At first, I thought everything was okay, but I was very, very wrong.

    I returned to work in October 2018. The drive to work was uneventful; however, I made a comment to a coworker that “I shouldn’t be here [on the job|. Something was wrong with my cognition,—I can’t explain it—but my brain was not processing tasks as it had for the prior 15 years at that job.

    What happened next PROVED that something was wrong. After eating at my lunch break, it was my habit to rest in my car for about 30 minutes, since I worked very long shifts. I went outside to the parking lot and wandered aimlessly, looking for my car. It was gone. I had no recollection of driving to work and parking it in a precise location.

    It took 45 minutes for me to stumble onto my car. I left work that day—October 22, 2018–for the last time. It got worse.

    My memory was simply non-existent, and I began to have difficulties walking—balance and gait, predominantly. I began physical and speech therapy, as advised by my internist.

    I received a phone call—I’m guessing in early 2019–from my neurosurgeon. He informed me that he was dropping me as a patient. This was immediately after I obtained my surgical records from the hospital. Was it a coincidence?

    I took my records to my psychiatrist, and what he said to me after reading them virtually stopped my heart. He looked at me seriously, and he asked me:

    “Do you know that you had a stroke during surgery?”

    Of course not! The neurosurgeon, nor anyone on his team, informed me of that! I was flabbergasted.

    Today, I am still in speech therapy, but that may transition to at-home assistance. I am finished with physical therapy, but must wear a weighted vest to aid in walking.

    I am telling my story because if anyone thinks the effects of traumatic brain injury are just something someone is “faking” or “making up”, let me assure everyone that the effects are real. I tell people that I divide my life now into two distinct periods: pre-surgery 2018, and post-surgery 2018. My fight to get back, or at least to find a “new normal” during the past 4.5 years, has been the hardest thing that I have ever had to do.

    So Skye, thank you for your post. These issues need to be communicated to friends, family, and employers. They are real, and they are effects which I never expected, and which I wish on no one.

    With much love and appreciation, thank you, Skye.

    • Skyewaters

      February 10, 2023 at 9:03 pm Reply

      Likewise, your comment hit me hard too! I’ve had similar experiences to you with your car that scared me. Definitely a blog post for another day.
      Thank you for sharing and your validation as I’m at the stage of having people who don’t believe this is true…

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