What would you do?

What would you do?

O for “Oh no!”, “Onward and upward”, “Over it!”?

Whatever it is, that’s where I’m at. Moving on should get easier, especially after consulting with so many specialists but…

It’s as trying now as it was when I first started out! 3 countries later and I appear to either not be getting the memo OR this is a common trend in the care we receive…(I’m opting for the latter).

My appointment on Tuesday, did not go as planned with *Dr N. However, it went exactly as anticipated. I’ll be honest. As much as I anticipated the outcome (I do every time), I have the smallest amount of hope that things may just go as I’d like them to. That I will be listened to, my symptoms will be the top priority to be explained and that the doctor will be as eager as me, to figure it all out.

Will I ever learn..?

When a surgeon outright ignores you (hardly making eye contact), mostly disregards the worrying symptoms you describe and makes no real attempt at finding out the root cause. When he chooses the suspected diagnosis of, “possibly migraine-related”, being the cause, by the Neuro Ophthalmologist, it seems like the easy way out.

(Might I add, this is the same specialist who insisted I go see the Neurosurgeon in case my loss of vision is being caused due to my Hydrocephalus and not migraine-related).

*Dr N agrees that the burning sensation/inflammation, all over body pain, numbness and limb weakness is something he cannot make sense of. Outright disregarding, and stating that he doesn’t agree with, the radiology reports and questions where Icame to a diagnosis/conclusion of spinal stenosis”. Labouring the point that he will not be “offering me a surgical procedure today”, as if I asked for it in the first place. Moreover, throwing in for good measure; “You do realise that we will have to re explore your ETV at some point. You do know it’s not a (whatever the bleep he said) I.e. “permanent fix”. Tempted to respond with; “Well duh!”, at hearing him state the obvious, I stopped myself and instead just smiled and nodded in agreement.

He seemed more annoyed that my GP didn’t write him a letter for my consult and confused as to why I didn’t seek medical help over Christmas and New Year when I felt unwell. Fark me! It doesn’t take a rocket scientist to figure that out. Everyone’s on holiday!!! And, getting any kind of appointment, with a specialist like him, takes anywhere from weeks (if you’re lucky) to months. By then, said symptoms have miraculously self-resolved. And, my past experiences at the ED takes too much internal wrestling to muster up the energy to sit and wait for hours, just to be sent home.

I asked him if, given the circumstances and the indication that there is an issue with my spine, could we not discuss cortisone or Botox injections? Something? Anything to help, and, if it did require surgery in the long term, would it not be better to do it now than to wait until I’m older, and be at a disadvantage because of my age?

Short answer from him: “That’s not how medicine works. Besides, I can’t see anything wrong with your spine other than a bit of degeneration. There is a change from last year’s MRI in comparison but, no cause for your symptoms”.

Is it time to move on..?

As much as the “fight” felt unfair and I feel like I let myself down a bit, I stood my ground enough to walk out with my head held high. My parting words to him; “In all honesty, I am going to respectfully disagree with you. The MRI might show up everything is normal but I’m the one living with the daily pain. And, my spine is telling me something is wrong. I’m unable to turn my head from side to side without feeling pain, I’ve had physio which didn’t help, my son gives me a massage on a daily basis and I’ve started exercising – all upon your recommendation after our consult about this last year. Yet, the pain remains. So no, I don’t agree that we simply do nothing. Just so you’re aware, I’m seeking a second opinion”. He invited me wholeheartedly, to do so and supported my decision, offering any one of his colleagues in the same practice.

I left without a response…

This fight is getting harder. I don’t feel like I can go on like this. It truly doesn’t feel worth it. If we have so many unexplained symptoms and the doctors, who are only human and do make mistakes, aren’t helping, is it really worth forcing the issue?

For context, I started using letters of the alphabet to track the doctors I’ve had to consult with, since my diagnosis in 2007, 14 years ago. Should I choose to move on, O will be the next letter…

My dad asked me what I’m going to do…honestly, I have no idea…

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