Hydrocephalus: Resuscitation through conversation…

Hydrocephalus: Resuscitation through conversation…

Do you ever have conversations, sit back later and realise there was a message in it for you?

It’s no secret, my previous consultation left me a bit down in the dumps (Ok, very much so!). I slipped down the same slippery slope, like so many other times before, and I’ve managed to claw my way back with Cindy providing my first “resuscitation” attempt. These last few weeks, since then, I almost feel like I’ve had moments with different people who have literally “resuscitated” me, with their words.

Intentional or not…who knows…

A few weeks back when I saw my GP, after that consult, I was at the end of my rope.

I tend to take my healthcare (or lack thereof) into my own hands when I feel like there’s no other way. Sometimes, this is simply because I can’t just sit back and do nothing!

I chose my battles and decided to manage some of my symptoms, (the ones I can actually do something about) and, got a referral from him, for Physio to help relieve my right-sided pain and numbness. I remember him looking at me at one point and saying, “I know it’s hard. I know it feels like they’re not listening, and you’re not being taken seriously. But you have a serious condition and you can’t ignore it when you’re symptomatic. No matter how many times you go back to ED, you have to keep on doing so. They have to help you…”. Given the frame of mind I was in, feeling defeated and just so over all of it, I heard him talking but didn’t listen2nd “resuscitation” attempt.

Then, a few days ago, I had to see him again to get the results from my 6-month follow-up Thyroid ultrasound, done last week. The topic of Hydro popped up again (Initiated by him). Whether he was trying to make conversation to fill up my 15-minute time slot or not, is irrelevant, at least he listens. He gets quite curious at times, asking me why certain things have happened or why I was treated a certain way. Being the straightforward person that I am, I told him I realise I must sound a certain way (though I’m not quite sure how but suspect it may be slightly negative), when I talk to him about this. The conversation went something like this:

We know that the Thyroid nodules are being managed with these ultrasounds. And, you should go back to the Endo specialist to discuss your management options. Your upcoming endoscopy in a couple of months, will give us an indication if the lesion they found is anything to be concerned about. But what bothers me, is what’s going on with your head! It just baffles me why they can’t find anything wrong…

I just smiled at him and asked, “Ever hear of a book called Do no harm?”. He just smiled but eventually said “No”. I told him a bit about it and explained how that’s the approach being taken right now. “I’ve been through so many doctors and have started using letters of the alphabet, with the latest surgeon being Dr L”. He looked at me wide-eyed and said, “That many? Surely it must be a combination of doctors though, so not all specialists just for your Hydrocephalus”.

I told him: “No, it’s a mixture of Neurologists and Neurosurgeons, purely for my Hydrocephalus. So, like you, you’re not on that list and you won’t be either…Neurologists want to treat you with anti-depressants and Neurosurgeons only want to fix what they can see is broken at the time. When they don’t know what’s wrong or can’t provide you with an answer, you’re a complex case or it must be that you’re depressed or fabricating your symptoms. If Dr L didn’t plant the idea of intermittent ETV failure in my head, to begin with, I probably wouldn’t be on about it right now. But, why say it could possibly be and then have my consult end the way it did?

If only her theory didn’t make so much sense to me…

He looked at me and asked, “How is this all affecting you? How do you deal with it? Do you ever get depressed or anxious?” I smiled again because it was like seeing into my own future with lessons from my past. “I’m so over that question. Sure, I get depressed, I have my high and low moments and I know exactly when I am. The experiences I’ve had with this condition have warranted it at times. But, right now, I’m fine – there are no issues. In New Zealand, all they wanted to do was put me on antidepressants, it made me severely depressed and suicidal, which is why I refused to take it. And, when I did, they took it the wrong way and wrote, “Patient refusing treatment”, on my notes – totally disregarding the effect it had on me. I even had one specialist tell me I’ve been misdiagnosed, another who said Meningitis isn’t a cause for Hydrocephalus and some who have said I misused painkillers. How I cope now, is through my Blog, I connect with other people around the world (with the hope of helping others by sharing my experiences). In return, they help me too and I get some validation – which helps“.

3rd “resuscitation” attempt…

He was typing all this down in his notes on his screen and I told him, “Seeing you do that is no different to when they did it. When you take those notes and read it, it’s all out of context and paints a completely different picture. The patient ends up looking and sounding like a crazy person who actually IS depressed and has some mental issues. Something, which couldn’t be further from the truth. It puts them in a bad light and anyone reading it would see it from that point of view and not the patients. This is also part of the reason why I’ve decided to stick to only you as my GP, so I don’t have to go repeating myself to another doctor and go through the whole song and dance again. It’s exhausting…

The fact is, it’s hard. The condition is hard, but the doctors don’t make it any easier. We go from one to the other when we don’t get the help or care we require and end up circling right back to square 0. An endless loop with the potential to drive anyone nuts.

But this is a catch 22 situation or as my Dad likes to put it “Caught between a rock and a hard place”. If we don’t get the care, we feel we deserve, we owe it to ourselves to keep trying to find someone who will listen and validate what we are saying. In doing so, however, we set the clock back in our care and have to start all over. And, the more we do this, the more we look like the ones with something a little more than our condition, going on.

The symptoms and effects of this condition, when they strike, do not afford you the luxury either of just ignoring it!

It’s normal, I suppose, for doctors to question like my GP did. Hell, listening to myself sometimes, I start doubting so many things…

The message for me though is: Don’t give up on yourself regardless of where you are. It doesn’t matter if you keep getting knocked back to square zero. What matters is that you keep at it. Yes, it’s tiring and soul crushing but how much more would it be, if you didn’t at least try? The way I see it, we’re all going the same way in the end. Until then, stick to your guns, be your own best friend and advocate. And remember, you are NOT alone in this. If no one else is there for you, at least you know I’ll be here to listen…

Consider this my “resuscitation” on you!

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, 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!

4 Comments

  • Ian Grace

    November 24, 2019 at 10:29 am Reply

    It surprises me (yet it doesn’t) to find that regardless of what part of the world we live in we all have the same problems when we reach out for help.

    • Skyewaters

      November 24, 2019 at 11:31 am Reply

      Absolutely! I used to be disillusioned into thinking I’d get better care elsewhere but, my experiences have taught me differently. As well as, connecting with others around the world through Skyewaters, it’s been a real eye opener.
      Thanks for commenting 💙

  • Sasha Lott

    November 22, 2019 at 4:16 pm Reply

    Thanks so much for your blog, it always makes me feel better to know I’m not alone in this and feeling much the same way XXX

    • Skyewaters

      November 23, 2019 at 7:07 am Reply

      Thanks Sasha. It works both ways 😉💙

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