There’s a certain level of trust I need before I (literally) let someone mess with my head. Some of the surgeons I’ve consulted with since diagnosis have definitely contributed to the realization of this.
When I was diagnosed in 2007, I never knew the surgeon who operated on me upon meeting him for the first time. I lay in the hospital bed, head throbbing and going half delirious from the pain. I remember him asking me questions like, “Tell me your full name” and “What’s your home address?”. I felt annoyed with him because all I wanted was for the beating of drums in my head to stop. However, I honestly couldn’t tell him this information, which I most definitely knew. Writhing from pain and nausea, I prayed for it all to stop and was extremely thankful when he instructed the nursing staff to move me out of the noisy general ward and into a room with the lights turned off.
This first surgeon didn’t have a very good bedside manner at all. In fact, if I had to choose, I would stay as far away from him as possible (In the end I did exactly this). Since Hydrocephalus and all it encompasses was new to me at the time, I went in blindly. I consulted with him a few days before my surgery (he was very reluctant to operate in the first place) but forced to in the end. Little did I know, this was the start of my uphill battle with not only the condition but also the medical profession. I changed from him as soon as I was able to because his aftercare was even more atrocious.
The surgeon who did my shunt revision – 2 years later, (which on day 3 since my admission to hospital – 3rd surgery, turned into the removal of the shunt and ultimately an ETV), was a God-send. An absolute gem in every sense of the word…I had met the opposite extreme of my first surgeon in him. Because of this, I can now compare and pinpoint the characteristics of what I need in a surgeon. Admittedly, everyone won’t match up to the standards of my “Angel in White” but, they need to at least tick some of the boxes for me.
These are just some of the things I look for:
Good listening skills,
Previous experience with Hydrocephalus and more importantly ETV and/or shunts,
Good follow-up practice and
Belief in being proactive rather than reactive
I know, this might be a tall order but I will testify, this is exactly what I had before.
The way I see it, if you are in a position to choose your Neurosurgeon, you should make an informed decision. Let’s face it, this is going to be a long-term relationship if you’re lucky enough to find the right one. The words “Till death do us part” springs to mind. However, I know there are situations like emergencies, not having medical insurance/aid, being reliant on the public health system, etc, which does not afford this luxury. It’s like being caught between a rock and a hard place.
At the moment, I am in exactly such a predicament. I don’t have a neurosurgeon following me. I have no one to consult with or call if I’m worried about some new symptoms lurking its head. I have medical insurance but am only covered up to 80% of which 20% (for brain surgery), equates to a hell of a lot of money that I don’t have. As a backup, I have private insurance but there’s a 3 year waiting period for coverage of pre-existing conditions…I still have 1.5 years to go. Also, having said that, when I had my 2nd/3rd/4th surgeries, there were unforeseen circumstances and I ended up being treated in ICU and a further 2weeks in hospital complete with Physio and other rehabilitation.
So…as I was saying, it’s a hell of a big bill!
I could get my GP to refer me to the public health system but there’s a 4-6 month waiting period just to consult with a specialist. And, as anyone with Hydrocephalus knows, time is of the essence. I’ve tried going private in the hope of just getting my symptoms attended to but that didn’t go anywhere either.
For now, what I have is faith in God that I will be OK. The care thus far and consultations I’ve had (ETV failure), have left me feeling less trustful of the latest surgeon. If I were to require surgery again in an emergency, I might just be at the mercy of this very same surgeon. After this consult, I can definitely say, I lack the confidence and trust in this man. It brings me to the crossroad of: Do I trust in man or do I trust God? Whether it be that for now I float faithfully or wait for some point, where God will send the right surgeon my way.
It’s a matter of trust…no matter how you look at it.