Brain injury of a different kind…

When you try to remain optimistic in the face of your own reality…

Between my post-op consult on Monday and listening to my Dad talk about his Last Will and Testament (following his COVID-19 diagnosis and recovery), I’ve been flung into the throws of a cry fest.

My brain feels stuck…figuratively and literally!

Warning: Vent ahead – Apologies in advance if this post is all over the place, my brain simply isn’t working.

I know it’s going to take time before I feel “better”, Dr Tollesson confirmed as much on Monday. Somehow, I hear these words and even utter them but, they don’t register. The dizziness is driving me insane and making me feel like I’m an absolute waste of space. For the life of me I can’t remember what he said about it. To feel validated seems important, right now. The main takeaway for me was that everything looks good on my latest MRI, my physical examination was good and time is what I need. Just how much time is anyone’s guess.

I suppose you can’t put a number to it.

The effects I feel, tiredness, cognitive challenges, memory issues, sluggishness – are the same as a brain injury except this happened during surgery. I’ve been reading what I can on the Headway website because I need help…even if it’s just to understand what I’m feeling and accept it. I’m so aware of how quickly ones life can change, being high functioning one minute and reduced to less the next.

The brain bleed during surgery has caused more delay to the “smooth recovery” I anticipated. (Admittedly, I feared not being myself after). I wish it were a case of waking up after surgery and feeling like a new person, but it’s not. If I had to be honest, I feel like a foreigner in my own body.

There were a few things I needed to know at my consult and some I forgot to ask about:

• like the results from the ICP monitoring (maybe that was only relevant at the time in helping him decide if I needed a shunt or not i.e the ETV wasn’t working).

• I also wanted to know what happened during my surgery to cause the bleed.

I asked him: “What’s the lifespan of a repeat ETV?” (After my first ETV, I was told 5 years is the statistical failure rate, anything beyond this, is a bonus). If I had to be honest, I suspect the signs and symptoms were evident at the 4 year mark. But…none of the doctors in New Zealand entertained my pleas for help, or concern.

I started my blog about a year after I moved there and recall having the symptoms I’m now being told to be aware of. I already knew what they were as it’s the same ones listed on the Hydrocephalus Association website. I knew them all. And, as much as it raised my anxiety levels at the time, they were squashed almost immediately at the hospital emergency department with Morphine and a pat on the back, back home. Morphine, part of the Opioid family, which (coincidentally) I have an adverse reaction to! Even seeing surgeons privately got me nowhere over the last few years before I moved to Australia.

I told Dr Tollesson that since I wasn’t taken seriously back then, my baseline indicator for seeking help in the future will be the vision loss episodes I had, which led me to him. I needed to confirm what it is that I need to be aware of. He was adamant that any signs of prolonged headaches, feeling unwell, memory/ cognitive issues, and/or incontinence/bladder issues would be reason enough for us to do further investigation.

His response to my question: “Much longer than the first one, maybe even forever but one never knows with these things. They could close up at any time, which is why you need to be aware of the symptoms and seek help if and when they arise”. (So ironic given my past experiences).

Forever is a long time and would probably equate to a cure but since we know there isn’t one, I won’t be getting my hopes up!

We discussed the option of a shunt in my future, which I am still deadset against getting, especially since I’ve had one before. Quite frankly, it’s not worth the headache (pun intended). There’s just too much uncertainty that goes with it however, not everyone has the same experience. He supports my decision and has opted to redo the ETV, if need be. He mentioned that he has a patient who has had 80 surgeries due to their shunt, saying: “Can you believe that? They are just so unpredictable…getting blocked or you develop an infection, which causes more life-threatening complications.” My response: “Yes, I can actually”, knowing fully how others in my Hydro family have had even more than this, individually. It might sound crazy but having more brain surgeries than birthdays is not uncommon.

This is our REALITY…

He also explained how the ETV (in my case) has worked well and that it’s more of a natural treatment option compared to a shunt. The body finds a balance and way of letting the CSF flow naturally, via the new pathway, as opposed to a shunt.

Then he described the ETV procedure.

We use a blunt instrument to make the hole in the floor of the third ventricle so it’s relatively safe. Not that I want to scare you but, pointing to my MRI image on the screen, there is a chance that you could puncture the basilar artery. If you do, it could cause a haemorrhage or stroke or worse. You have to be very careful when doing this procedure“.

Interruption of the blood flow through the basilar artery can lead to severe brain damage, organ malfunction, or even death. An aneurysm, or bulge in the artery wall, may push that portion of the brain, causing rupture and hemorrhage (bleeding). A thrombosis, or blood clot, may block the artery and prevent blood from passing through. Because of its location, as well as the key role it plays in providing oxygen and nutrients to vital portions of the brain, an aneurysm or thrombosis in the basilar artery is particularly dangerous.

I said that there wasn’t anything he could possibly say that would scare or surprise me. Maybe the response came too quickly and my reaction at the end of this post, is delayed…

He agreed we should do a repeat MRI in 3- and 6-months’ time, thereafter annual visits would be good enough and then every 2nd year.

My discussion with my Dad

He asked if everything was “fine now” after my surgery and consult. Hearing myself utter the words, “Until the next time because there is no cure”, somehow just brought it home.

It always gets me how people tend to ask this question almost expecting a, “I’m cured now” type response. Their reaction and body language/visual disappointment, speaks volumes. It just adds to the overall way I’m feeling.

What kind of life is this that requires you to “be strong”, “hang in there”, “have faith and trust”, when all that stares you in the face is brain surgery after brain surgery? It’s not always a case of having surgery and waking up better than before. I’ve had those, but this time it’s different. Maybe it had to be so I can write about it?

I feel less like myself and scared, even anxious about the future. I can give it time but this dizziness, inability to focus or even feel like half the version of me, is getting me down. I told my husband, it’s not like a headache where you just take a pill, and the pain goes away. Assuming the blood in my brain is causing me to feel this way, there’s literally nothing I can do about it. It has an impact on every part of my life – work, family, etc. It scares me!

Worse than that, anyone who looks at me will think I look fine, but inside, I know I’m not. I feel like I’m out at sea on choppy water and there’s no way off the tiny life raft. The seasick feeling causes me to feel powerless. It’s the old annoying complaint of living with this invisible condition. It stares me squarely in the eyes. Reminding me, constantly, that I’m not in control. I feel powerless in every way possible. I want off this ride…

The story about the tortoise and the hare comes to mind, except in this case, I’d add in a baby slug. That’s about the speed my brain is working at right now. It truly is debilitating, especially for someone who has always been a hare!

The culmination of all this came to a head and, just like that, while in the shower the other night…the flood gates opened…!


  • Anonymous

    August 15, 2021 at 5:56 pm Reply

    If i understand you correctly, you had an ETV may years before, then a shunt, now a second ETV (which seems to work so far) and your neurosurgeon agrees that they may do a third ETV if the one done a couple of months ago also fails?

    Here in Germany they seem to strictly deny doing more than 2 tries, even if they are (many) years apart. Its kind of disappointing remembering how many problems shunts can cause and that additional surgeries are almost certain for the vast majority of patients.

    But i wish you wont need any kind of further surgery – no ETV and especially no shunt!

    Kind regards


    • Skyewaters

      August 15, 2021 at 8:43 pm Reply

      Hi Stefan. The short answer, no. I had a shunt when I was diagnosed with endless problems for the 2 years after that. I eventually had 3 surgeries over 3 days, 2 were shunt revision and replacement and the 3rd an emergency ETV. That was in 2009.
      I’ve now had my ETV redone but if it failed, I would probably have had a shunt put in. So far, so good. I hear you on the shunt front. My choice would be to have the ETV redone again, if need be.

  • IAN

    June 18, 2021 at 5:50 am Reply

    I am so very sorry for what you are going through Skye. I remember the comments you passed pre-surgery. Full of hope and optimism. It must feel quite deflating to not be quite going like you hoped. I can also understand the sentiments. “Stay strong” etc. As well-meaning and well intended they are meant to be, if you are are going through this, living with this, it can be oftentimes, the last thing you want to hear. So that said Skye, please rest assured that you and your family are in my thoughts and my sincere wish is that you get back to some version of your “old-self”. Best wishes friend!

    • Skyewaters

      June 18, 2021 at 6:00 am Reply

      Thank you for your kind words, all of which is spot on!💙

  • Liz Welker

    June 18, 2021 at 5:27 am Reply

    I’m sorry your parents think you’re cured. I’m actually grateful that I was dx’ed in early infancy and had several surgeries early in life, so my parents know better, but after almost 41 years with this shunt, l think they want to believe I’ll never need another surgery. Complacency is dangerous!

    • Skyewaters

      June 18, 2021 at 5:37 am Reply

      It’s not that they think I’m cured but more, like you said, “they want to believe I’ll never need another surgery”. It’s disheartening for them to hear as it is for me to say. I can empathise with them. It’s just tiring having to repeat it to everyone I encounter.

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