A Neurologist focuses mainly on treating you with medication to control your symptoms. A NS is like a plumber, they fix the leaky/broken pipe (shunt) or reopen the blocked/partially blocked hole (ETV).
Understanding the condition you have, is the first step to knowing what you need. For some, their faith, trust and belief in their medical team is unwavering (essential when you have this). They don’t question and they have every right to feel that way. However, there are some of us who are not as fortunate to have those important relationships. We don’t have a known medical team/person, leaving us with no other choice but to accept the care that we get (public health care). Or, it may be that we see someone privately, but we lack that human connection with all the good stuff I mentioned above.
I have a tendency to people-watch, I pick up on their body language, tone of voice, read the queues they give (knowingly or not) – analysing every little detail. I’ve seen doctors who are simply part of the system, who treat you like just another number, they’re overworked, tired and at the end of their rope. (I can empathise, to a degree, especially considering the enormity of the decisions they have to make. But, I lean more in favour of the patient where I can empathise fully). I’ve experienced first-hand those who throw medication at the problem, in hopes that it will just go away and even entertained it, hopeful of the same outcome.
Most often in life, people tell you to listen to your gut, this is advisable more often than not. So, when you’re sent from NS to Neurologist, it’s normal to feel like you’ve been done in. It’s a message you receive loud and clear that whatever “you think“, may be going on with your shunt or ETV, is not being taken seriously enough. I’m not discounting the contribution a Neurologist has in the care of people with Hydrocephalus, however, we know our body best. And, when there’s a physical problem i.e. treatment failure, no amount of medication can fix it!
Listening to your gut, doesn’t always get you the result you hope for…
Having been in this situation myself before, I’ve been asked the question so many times: “But what do you want the doctors to do?”. I still feel this is an unfair question. One which is hardest to respond to because a response containing words with any suggestion of more brain surgery, dare not leave your mouth.
So, you stop yourself...
I know of too many cases where diagnostic testing and imaging are simply not enough to show what’s really going on inside someone. However, not all doctors are open to this being the case and would rather “err on the side of caution“. (I have only met one NS, in the 14 years since I’ve been diagnosed, who listened and took a chance when my shunt was failing). A time of torment where you’re the only one who appreciates the potential of the ticking time bomb inside.