NeuroTalk Support Groups - The Results are IN...My Neuropsych Report findings..VERY long read...sorry!!

Hi Shazza. Regarding what PCS is called: I have come across some professionals who do not like to use those words and use other words in their diagnosis. My attitude has been to not get myself too focused on this but instead to focus on the practical side of what a service provider has to offer, ie helping with understanding of the condition, therapy, insurance claims, whatever they are helping you with. Of course it would be easier if they could agree on terminology but if they can't perhaps you could just think of whether or not someone is likely to help you, and if they aren't giving you anything that you need then that would be the time to get someone else.

Reading what your neurologist wrote I didn't think that he didn't necessarily not believe that PCS exists but he does not think that you have it. One criterion that is important is whether symptoms have been caused by a concussion. In may be that in your case the neurologist does not think that it is helpful to focus attention on the concussion. Instead, he mentions "a constitutional syndrome with components of headache and anxiety" ie he thinks that your syndrome is to do with your constitution that caused you headaches, and some people are prone them, and also anxiety.

Inevitably someone who has such a horrible condition as PCS will be anxious about it. Neurologists can pick up on this and wrongly infer that it is the anxiety that has caused the symptoms, rather than the other way around. This is the sort of logical trap that people fall into all the time, and the medical professional seems to be just as prone to fall into it as any other person.

So regarding what you should do: I would say that you need to pick your medical professionals carefully to suit your needs and not worry about changing one for another till you find someone who suits. It is probably worth making a distinction on any grounds that will make real differences to treatment; for instance, if whether a condition is due to organic changes or purely psychological. However, it might not be worth losing too much sleep over the semantics of a diagnosis. Personally, I am not too fussed anymore whether a doctor uses the terms mTBI, PCS or something similar providing that they give me what I am looking for in terms of treatment, medication and help with any insurance claims.

Good luck.
CS

Quote:

Originally Posted by Shazza (Post 1094841)

Thanks EshersDoll. You are right, it seems the neurologist is likely to have a corporations best interests in mind. The annoying thing is that in New Zealand there is a no fault accident policy, so a government agency called Accident Corporation Commission (ACC) is there to provide assistance to help you recover from an injury and return to work, irrespective of whether you were at fault in receiving the injury. ACC sent me off to the neurologist for an assessment. I have an advocate who has indicated that what I am going through is very common and they are very familiar with the process I will now need to go through. I understand that they need to make sure that people aren't rorting the system but it is frustrating not being believed - fortunately my employer (also a government agency) is very supportive of me and unimpressed how I am being treated.

You asked how I was injured. It wasn't a major knock to my head: the back of my son's head collided with my left temple (thank goodness he is ok). Symptoms progressively got worse over the first month or two (that was 11 months ago). I have had either 4 or 5 previous concussions - all of which I recovered from within 3 months. So I expected that my recovery would be quick from this as the knock to my head was less than the last concussion I had.

In January I had a neuropsychological assessment which supported the diagnosis of PCS. It assessed my premorbid functioning to be between High Average and Superior and my post injury functioning to have declined to Average (which is less than what I am used to but still ok if that's where it remains). However, immediate memory was Low Average, delayed memory was Borderline and Visuospatial/Constructional skills were Borderline. Fatigue resulted in a noticeable further decline in all aspects of my functioning.

I am looking at seeking a different neurologists opinion. I just need to find a neurologist who has some expertise in concussions and believes in the diagnosis PCS.

I am amazed at how little seems to be understood about PCS. Although the Occupational Therapists I have encountered appear to be very knowledgeable about it. My experience is it seems it is the medically training professionals who struggle with it the most ('if you can't see it then it mustn't exist' type thinking). Reading other peoples comments has made me realise this seems to be consistent across the world - this is worrisome given the prevalence of PCS. But the up side is I know I am not alone.

Advice from all is greatly appreciated.