Quote:
Originally Posted by KarinaM.
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.
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Hi Karina
I think you have come to a good place to get information for your son. Other people on this forum have said that a lot of neurologists are not up to date on PCS. I was lucky and have one that is. But I think you are on the right track with getting the neuropsych. eval and finding a doctor that can give the right diagnosis of PCS. There does not need to be evidence on MRI and CT to diagnose PCS.
As far as what your son should and shouldn't do... I found doctors to be very limited in information / advice about that. I think at this point, you and your family are best to help him with that. What has he done so far to help with the PCS symptoms? Has he had a period of total rest and restriction from stimulating activities such as TV, computer, video games, heavy exercise, etc...? Does he have a good diet to allow for brain healing?
I can tell you that I had a lot of the same symptoms as your son, and they were very intense and very debilitating. At 3 months in, I too was wondering if I was going to make it. Please know: it does get better, yes, it does get better - but only with time and rest. It is different for everyone, but 3 months in is not necessarily a long time - it can take a lot longer for the brain to heal. I know it is so difficult, but the best thing you and your son can do is accept the fact that his life is going to be different for a while, and you have to make lifestyle changes in order to allow him to heal. I know that is not what he wants to hear, but I do believe that acceptance and rest are the best ways to get through this. I tried for months to just struggle through and carry on with my normal life, but that had very bad results. Now that I accepted and reduced everything in my life, I am on a good healing path and have made great strides.
If he won't listen to your advice, is there a friend or someone else that might help?
The bus ride may be difficult for him. Is there any way you could rent a car? One that rides higher to the ground would be good so that he does not feel a lot of the bumps as much.
There are many people that have been on this forum longer than me, but they may tell you similar things. There is also a vitamins tab on here that can help.
If you are looking for people in Australia specifically, you might start a new thread about that.
Also, If you can put spaces between your paragraphs, that helps people read your posts easier.
I hope this helps, and best to you.