Thanks - my son was interested to hear of Zac's situation, as we are also in Australia (where it is difficult to find doctors who know much about PCS!).
My son's current symptoms, which will probably sound familiar: persistent light-headedness (varying degrees, not off-balance dizziness, but more like faintness), persistent band-like headaches, back pain, chest pain, neck pain, rapid heart rate on mild exertion & sometimes when at rest, sensitivity to light & noise, sensitivity to watching movement, head/temple ‘tingles’, brain pain from movement such as ‘nodding’ head, insomnia & sleep disturbance,inability to visually focus on things close up (increases light-headedness), inability to read from bright white paper & electronic screens (increases headaches and light-headedness), head discomfort travelling in lifts (elevators), inability to regulate body temperature properly, inability to process new information/ complex thoughts, vivid, disturbed dreams, fatigue, unusual urinary frequency and urgency (esp. when headaches & lightheadedness are bad), pulsatile tinnitus (just learned that term yesterday!), poor cognitive function (scattered, foggy thinking; inability to focus); and has had clear nasal discharge from one nostril which has diminished (2 beta-2 transferrin tests were negative for CSF).
Nothing unusual has turned up on normal MRI and CT scans, as we know that more sophisticated imaging techniques are required.
GPs here in Canberra are not very cluey about concussion or PCS, and even the local neurologist said he wouldn't confirm a diagnosis of PCS because he wanted to find something 'organic' on diagnostic imaging -- definitely one of those times when I felt that I (a mother & a professional health researcher) knew more than the 'specialist'! My son has recently been seen by a neurosurgeon who gave him the PCS diagnosis (3 mo. after the injury) & referred him to a neuro-psych in Sydney (hmmm...wonder what the 3.5hr bus trip will be like).
My son is obviously keen to know when he will be 'better' and able to return to his normal life -- and I fear for his mental health if he is told that his condition could continue for a year or even longer. He is currently thinking that he doesn't know how he will cope if it goes on for another 3 months. Big part of the problem is that no one with a medical degree (well-informed mothers don't count) has given him the straight talk about what PCS means for him in terms of what he can/can't and should/shouldn't do. Live on his own? House-sit for a friend for 6wks? Return to work (retail environment -- scene of the injury!)?
25yr old guys are in a big hurry to get back to normality and are not receptive to information that puts a dampener on that.
Would welcome any feedback/tips/advice as well as any info from anyone in Sydney or Canberra.