Poor cognitive function is a major reason to push for the NPA. My suggestion would be to see if you can get the neuro surgeon to insist to the insurance carrier that it is a necessary procedure given the symptoms. I was pretty lucid and articulate after my injury also, but I couldn't solve a flashcard problem 7x4=?

[QUOTE=bluesfan;1137593]Just a thought Karina
PCS is big in the news here at the moment in relation to sports injuries (rugby & league in particular) - do you have any family, friends co-workers etc who have any connections to sports teams or clubs. They could maybe put you in touch with someone who could find out who the club uses as their consultant on this type of injury. ...
Also the insurance co. not paying for the neuro/psych seems down-right mean penny pinching. Surely they paid for his initial emergency treatment and assessment (Xrays, MRI etc) for diagnosis - then they should obviously be covering this. ...'

Yes, the Australian Institute of Sport, located here, has provided some useful contacts, primarily sports physicians rather than actual brain injury specialists. Too small of a population here, I think, which is why people end up going to Sydney for diagnosis and treatment of various conditions.

The referral to the neuro-psych for testing was from a specialist we consulted for a 2nd opinion (not impressed with the local neurologist). This was w/out pre-approval from the employer's insurer, as we were prepared to pay for that.

We did get a GP referral for that consultation but hadn't provided it to the insurer since we weren't sure what would come of the consultation & whether my son would want to see that specialist again.

Costs haven't been too bad so far, thanks to Australia's excellent health care system and what the insurer has agreed to cover. Re future tests and treatment, I think the insurer will put most weight on their doctor's report, but their real concern is getting him back to work. If their doc doesn't think a neuro-psych assessment is necessary, then it will be a case of our specialist, who is concerned about my son's condition & recovery, vs their doc, who may tell the employer & insurer what they want to know. :-(

You could almost see this coming -- the predictable line from the doctor when things get to a certain stage and he knows that the parent has taken an active interest in her child's condition:

"I'm not exactly sure what’s wrong with you," the doc says to my son, "but the fact that you are keeping a detailed record of your symptoms in a daily journal is probably not helping, and I also wonder whether your mother’s involvement might be counter-productive…".

While feeling that this was yet further confirmation that the word ‘neuro’ in someone’s title is no guarantee that his understanding of PCS is better than yours (esp. if you are a pretty cluey parent who has been researching PCS pretty intensively for 4 mo.), I mumbled something deferential & polite and noted that my son’s journal had proved to be useful on a number of occasions, such as at visits to the Emergency Dept. to investigate acute symptoms.

At this point, my son leapt in and said, in so many words:

"Look doc – my symptoms are very real, and my mother has nothing to do with it. I know that she can be a bit overbearing at times [thanks, kid...], but what has been happening to me has been totally independent of any contact that I have had with my mother. The symptoms began before she was even aware of what had happened, and everything that has happened since – including new symptoms and the worsening of some existing ones – has been very real. I am experiencing these things, and they have nothing to do with whether I see my mother or with anything that she says!"

Champion performance -- and confirmation that his cognitive and verbal skills are still pretty sharp, despite the fairly debilitating physical symptoms!

And confirmation, as if any were required, that there is still a long way to go before the health-literacy ideal of 'information sharing' between patients, carers and clinicians is truly realised.

You are right about the new information coming out on acetaminophen...

Here is one example:
http://psychcentral.com/news/2015/04...ons/83491.html

http://psychcentral.com/news/2013/04...ars/53821.html

Hi Karina,
I'd been wondering how he was doing.

Was this the Neuro in Sydney or local?

This was a follow-up appt w/the neuro-surgeon who had previously provided the PCS diagnosis based on my son's symptoms more than meeting the 2 main sets of PCS criteria. He seemed to be more knowledgeable that the local neurologist whom we had seen & was certainly more communicative.

He had received the neuro-psych assessment (we hadn't), which obviously didn't provide him with the link to the 'organic cause' thing that these clinicians seem to be looking for -- although whenever I have mentioned the option of sophisticated diagnostic imaging in Sydney (DTI, fMRI), they say, 'No, I really don't think that is necessary...'.

Clinicians get really frustrated when they are unable to find obvious 'causes' for things & when they can't make sense of what's going on. That's why they need to have a much more open mind about the info (personal & research-based) that patients & carers can provide -- ie, more of a partnership model that respects the contributions of patients, carers and health professionals.

The only positive thing that we came away with was recommendations for a neurologist in Syd. & in Canberra, which we will follow up.

I have also managed to get an appt for my son to be assessed by the Rehab Medicine doc at the hospital who can refer him to other health professionals within the public system. But, as ever, the key seems to be to find someone who is actually familiar with PCS and understands its many manifestations.

The experience so far has been quite discouraging, ("Well, we're really back to square 1, aren't we?", my son said), especially given that he thought he did quite badly on the neuro-psych tests. (I don't really understand how these tests can determine cognitive damage if there has been no 'baseline' assessment...)

In the meantime, he has continued to experience a range of physical symptoms including severe lightheadedness; headaches; gastro problems; back, abdomen, neck and shoulder pain; disturbed sleep; noise & light sensitivity; intermittent clear unilateral nasal discharge (sometimes mixed with blood -- suspicious for CSF but 2 beta-2 transferrin tests were neg.).

Neuro-surgeon suggested getting neurologist to focus on the most important specific issues, such as the lightheadedness. While I understand the reasoning (after all, I have read, 'How Doctors Think'!), this just smacks of looking at individual symptoms in isolation rather than (a) listening to the patient and (b) putting together the pieces of the big picture.

A NPA works without baseline testing because baseline testing is more valuable as a basis for interpreting sports related neuro cognitive testing (ImPACT, CNS Vital Signs, CogSport, BrainMinder, etc) used after sports concussions when return to play decisions are being made.

The NPA tests are scored against a database of the general population normalized for age and education. Plus, there are some tests that measure intelligence that can be compared to current function. The premise is that intelligence has less deterioration from brain injuries than cognitive function.

For example, I score in the top 88th to 99th percentile of the population on the intelligence scales but at the bottom 10% for processing speed, 5% for auditory memory, 12% for visual memory. There is no way my low memory or processing speed could have allowed my intelligence to develop to the point it did. This means my cognitive functional decline was after my intelligence developed and that my cognitive dysfunctions are organic.

Once your son gets his report, he will be able to try to accept the reality of his dysfunctions so he can try to learn work-arounds rather than constantly being frustrated as he fights against them. The self-doubt is very stressful. Moving on is ieasier with understanding.

btw, With all the symptoms you son has, I think it is valuable to try to separate the physical ones from the cognitive/neurological symptoms so they can be treated separately. There are no treatments for a broad range of concussion symptoms. For example, it sounds like he needs some specialist care for his vertebra, thoracic and cervical. Very few neuros have the skills for this. A Physiatrist (Physical Medicine and Rehabilitation) are often better.

My best to you both.