2 years ago I posted this:
There’s always risk with any operation. Despite having a brain bleed during surgery last week, the reason for the blood in my CSF, I feel fortunate to just wait it out and have the blood clear. The discomfort and side effects of nausea, headaches and general unwell feeling, are nothing in comparison to the alternative. It could always be worse, right..?
“By passing the endoscope through the brain there is a small risk of causing a haemorrhage, i.e., bleeding within the brain or within the ventricular system. This may be of no consequence or it may be very serious or even cause death. This risk of a life-threatening haemorrhage or a haemorrhage that causes a stroke which results in paralysis or other neurological deficits is less than 2%”.
What I know now about this bleed…
It wasn’t as simple as just “waiting for the blood to clear”. As a neurosurgeon said to me recently, “A small amount of blood like that shouldn’t cause any issues BUT, blood in the brain is blood in the brain”.
I’ve even been told that blood in the ventricles “shouldn’t” cause any issues. But, mine was intraventricular and in the subarachnoid spaces – “no obvious source”. Regardless, I don’t need tests to tell me there’s been some damage done. Because I feel it. Every. Single. Day. Deficit’s I’ve been left with. The person I used to be, struggling under the weight of it all. Unable to work. Uncertain about what the future holds.
It has taken me this long to figure it all out on my own.
⚠️The fall (twice), after being discharged. ⚠️Struggling to find my words and referring to everything as “thing”.
⚠️Making excuses by saying “My brain is “glitching”, whatever that means.
⚠️Feeling extremely self-aware of my own shortcomings and embarrassed at times. Especially, during meetings.
⚠️Getting lost a few times and not knowing where I was or where I parked my car. Instant memory loss❗️
⚠️Feeling extremely overwhelmed, anxious & depressed. To the point of seeing no other way out❗️And more…
Did the hospital and surgeon drop the ball? Highly likely. But, what difference would the answer make now..?
What should have happened (in my opinion), is a transfer to the brain injury rehabilitation unit instead of being sent home to recover. Something I’m on the waiting list for now. 2 years after the fact, and only because I figured it out, as painfully slow as that may have been.
A bit late..? Let’s hope not🙏🏼
If you or someone you know has had a bleed during brain surgery, ensure you get some rehabilitation (for what it’s worth). Don’t dismiss it. The damage may not be undone but, there may be some useful coping mechanisms, to help ease into acceptance, of this crazy new reality.
Sandra Lawton
May 30, 2023 at 3:33 pmAll of that…it has taken me over twenty years to find the person whom I once was. It felt as though the person ,whom I once was, had been taken away, leaving a defective one in my place.
Skyewaters
May 31, 2023 at 12:11 amThat’s a long time but I can certainly relate.
Robert Myers
May 18, 2023 at 1:54 amMy last stay for a shunt replacement lasted for 3 days. My parents visited me, and we chatted as if nothing had happened. Sure, I had some pain, but the conversation seemed normal.
I had at-home OT/PT therapy for a few weeks after surgery. The first symptom of a problem was horrendous memory loss. Then, a physical therapist pointed out that I needed continuing, intensive PT, because he noticed severe gait/balance abnormalities.
I was never informed of a brain bleed during surgery, but it was confirmed later by one of my other doctors.
I will never be the person I was prior to 2018–the guy who worked a grueling schedule of 12 hour shifts in a complex pharmaceutical job. That person is gone.
The recovery from this surgery has been long and difficult, and I think that most people don’t realize the gravity of neurosurgery.
Skyewaters
May 18, 2023 at 4:05 amI am sorry to hear that Robert. I get what you mean when you say “That person is gone”. I feel the same way. Only some aspects remain for me but mostly, so much has changed.
You’re right, the gravity of neurosurgery is just so much more than any of us know.
Thank you for sharing.