I’m so sorry I disturbed you doctor. Of course you know better than me…

I’m so sorry I disturbed you doctor. Of course you know better than me…


When I woke up on Saturday morning with a headache and slept all weekend I should have known it couldn’t be anything serious. Even when I couldn’t keep my eyes open at work on Monday, I should have just gone home, popped some Panadol and had a good sleep. I’m sure my body didn’t get enough rest…

Instead, I decided to come to the ED because I thought, maybe, just maybe it was something else. You said that you wanted to do a CT scan and I made a silly comment about how you wouldn’t see if my ETV was failing on a CT. I suggested you do an MRI with flow study because it would give you a better result. You’d actually see the stoma (ETV hole) and the CSF flowing out of it. I am not a medical professional with years of study behind me, much like yourself. I’m sorry I thought I knew better than you.

I also told you about my blurry vision the week before, which I thought was a bit strange. Maybe I was just staring at my computer screen for too long.

We done the CT because you said “we have to do some form of imaging“. Since “it’s not so easy to get an MRI done at this time of the day because people are going home”. I suppose it’s silly of me to expect that just because this is an Emergency department at the hospital, that I would be able to get any diagnostic test done to make sure my life is not in danger. Surely death would understand that his time should be adjusted to working hours – between 8 and 5. I’ll make sure to pass along that memo.

P.S From previous visits, I’ve found that weekends are not the best time to get sick either. 

Thank you so much for the cocktail of pain relief you pumped me with… I simply love the high feeling I get from all the drugs I get in the ED.  Though this time round, I didn’t get offered Morphine, I did have a nurse smile sweetly and ask what I would prefer as she wrote down my order – so I said Tramadol (the first thing that popped into my head).  It reminded me of placing an order at the local diner.

Oh, and my all time favourite line “we need to get your pain under control so we can send you home“. My visit surely would not be complete without those musical words…I’ve heard this every time I visit.

I so love how you care enough about my well-being to send me home where I can do nothing for myself. Anyone on that kind of high would feel better because those pharmacists who developed the drugs did a great job on the effect front. Next time I’ll try to remember that and pop a handful of pills, (which I’ve accumulated from all my visits), then I don’t need to come bug you.

Never mind finding out what’s really causing my symptoms because “it’s called triage” right? Pain management = Job done…discharge patient.

I must admit, I could not contain my surprise when you came back and said the CT scan showed nothing to be concerned about. Who would have guessed that would be the result?…Oh wait, I think I said something like that to you before…damn these drugs are really doing a number on me. I feel so happy…

Apparently the neurosurgical team agree that there is nothing of significance on the scan as well. Surely they would have said something about the difference between a CT and MRI flow study to see an ETV failure. I feel so dumb now when I have all these specialists and doctors who know better than me anyway, looking out for my health.

Good on you for, politely, telling me off too. You are absolutely correct…I shouldn’t suspect that a headache could be my Hydrocephalus acting up. Sleepiness too can be caused by anything and doesn’t mean anything in the Hydro-scheme of things. Maybe I should try working my way back to Hydrocephalus instead of suspecting it at the first symptom.  Maybe something viral I caught off one of my kids or just a tummy bug…seems like a sensible place to start.

Surely I should practice the luxury of not worrying about my Hydrocephalus first and maybe get on with living my life.
It’s just been so scary for me over the last 8 years since I was diagnosed. I jump to the same conclusion ever since I started my frantic search on the internet about this condition. I guess I could also send and email to the Hydrocephalus Association who have this on their website about ETV failure and get them to maybe revise what they are telling people:

Signs and Symptoms of Complication

The symptoms I was having – Vomiting, Headache, Vision problems, Irritability and/or tiredness

Difficulty waking up or staying awake (this symptom requires urgent attention as it can potentially lead to a coma)

Decline in academic or job performance

Oh what am I on about anyway? I have the discharge note you gave me, advising I go and consult with my GP in a week’s time or if my symptoms don’t improve. As a matter of fact, 2 days after my discharge from ED, I called my GPs room and after passing messages back and forth via the very competent nurse who understood clearly every word I told her, I was kindly informed that my GP could not do anything for me. But, he would be happy to discuss anything I was concerned about.

The way I see it, if my ETV is failing, then I might just slip peacefully into a coma or check out of this world. I really wish with all my heart that you had done the MRI, even if it meant I had to come back during business hours. My peace of mind would have been all the better for it, if nothing else.

So…here I am…a week later and still floating with the fairies ’cause my head hasn’t stopped spinning and the tiredness of my brain has reached a point of uselessness. I’m on non-stop headache and vomit alert at the moment…and trying my best to function as a working member of the company I work for. It’s mind over matter time and I’m even fighting against my body rebelling to eat because I have zero to no appetite – so shoving food in my mouth, because that I can control…right?

I wonder how long I can keep it up…But hey, not to worry, if I don’t feel better…I’ll just come back to the ED to bug you….so you can treat my pain and get me back home because you do your job so well…every time.

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Thank you for taking the time to read.

I blog about Hydrocephalus to give a voice to the millions of people around the world with this condition.  As much as these experiences are unique to me, 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!

7 Comments

  • Angie

    February 18, 2016 at 4:41 pm Reply

    Sky, My 12 year old son had an ETV don on Oct 19, 2015 and we are having those exact same issues(even from his NS). Have you had any success since your last post on if your ETV is failing or if ” it is all in your head”)? That is what they keep telling me. E-mail me and let me know.

    • skyewaters

      February 18, 2016 at 8:05 pm Reply

      Hi Angie. Sorry to hear that your son is going through this. Have you thought about getting a second opinion?
      I’ve finally managed to get an appointment for the end of March but it’s just a consult with a NS, hopefully he can shed some light for me and do an MRI with CINE FLOW STUDY. I’ll post more on my previous ETV failure Guinea pig post. That’s what I feel like I am…
      All the best for you and your son.

      • Angie

        February 19, 2016 at 10:23 pm Reply

        We just had a sleeping EEG to see if it might possibly be a rare seizure disorder that might have possibly showed itself at the same time as the Hydrocephalus. We should know the results from that in around a week. Then we will know if it seizures or the Hydro acting up again. BTW, I think we are ALL guinea pigs for them…..

        • skyewaters

          February 19, 2016 at 11:45 pm Reply

          Fingers crossed you get the answers you need for your son Angie and I wish you all the best going forward.

  • Linda

    October 19, 2015 at 11:12 am Reply

    Yeah, agree. Before surgery, I landed.in Emerg, and got a junior registrar. Told him. Discharge said: headaches, not specified.

    Post surgery, I said, I want a patient complaint put in said registrar’s file. Said you need more training. d’oh. Patient tells you whats wrong, and you tell them thst shit? Please, get real.

    • skyewaters

      October 19, 2015 at 5:47 pm Reply

      What kind of surgery did you have? Shunt or ETV. It’s a pity we have to fight this hard to be heard when we are already fighting a condition with some pretty bad odds…
      Thanks for your comment Linda.

  • Joggingproud

    October 16, 2015 at 1:43 pm Reply

    I know it’s frustrating. I hope you can get some “real” answers soon. Hang in there friend.

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