When you are trying to find the right support following a brain injury, it can be a bit like jumping through hoops. On the one hand, you don’t feel capable of questioning the process you are faced with because you just want to be given the answer, but then it can feel like you’re just not being heard.
Trying to prove how my injury had changed me.
As part of the injury case my solicitors (it wasn’t CFG Law) built for me, they sent me to a neuropsychologist to gain more evidence of how my injury was affecting me. They tell you not to try to look up what you will go through at your appointment with them, but curiosity got the better of me. Basically, (and yes, I’m going to probably have to oversimplify this seeing as I’m not a doctor myself) you go through a series of questions to rate your mental health as well as exercises which are to test the cognitive functions of your brain. Bear in mind at this stage my diffuse axonal TBI hadn’t been correctly diagnosed yet.
I was only asked to do maybe 3 or 4 of the cognitive tests, and I scored in the “normal” range, which I felt didn’t highlight my issues. But the mental health scores showed me as having severe anxiety and depression, which was accurate. Remember, this guy was on my “team”. It wasn’t his job to try to say I was lying or overly rate my injury, just to give an honest, professional opinion.
The official report from the private neuropsychologist.
So, what did his report say...? He didn’t believe I had a brain injury and that rather than an organic injury, he thought my symptoms where psychological. He suggested that having been through such a traumatic experience, I was suffering from PTSD. But wait, it didn’t stop there... He went on to say that he thought I wasn’t lying about my mental health answers, but I had innocently over embellished them. This is despite the amount of time I broke down uncontrollably in front of him. I was hurt and upset about this because I knew I was different. To be told everything I was experiencing was, in his opinion, psychosomatic was crushing. That felt like I was being told to “just get a grip” and I was being a cry baby.
How can many brain injury survivors can come out of these tests as “normal”?
I eventually saw a neuropsychologist through the NHS who gave me 4 hours of testing and wrote a much more comprehensive report which agreed that I had suffered a brain injury. (That’s right, going private doesn’t always mean better.) Plus, she explained how it was possible for me to be scoring as “normal” when I knew I wasn’t how I used to be. Essentially, the bracket for “normal” is so large, you either have to be severely hampered, or a complete genius to come out as anything else. Only the lowest 16% of the population will show as below average. And in some areas, I did score very low, such as concentration. But because there were several high scores for me as well, I still averaged out as “normal” overall.
Don’t be afraid to ask for a second opinion if you don’t feel that the results are reflecting your experience.
Even when the first neuropsychologist was sent a copy of this report, he still stood by his original conclusions, reminding me that it’s a matter of opinion. Even though he had only met me twice, and this other doctor worked with me for months, he still felt he knew better. And later a brain scan did prove that I definitely did have an organic brain injury, but he claimed he hadn’t seen it when the solicitors knew he had.
He had nothing to gain as he was being paid for his time no matter what he said. I can only assume that he was so adamant because to admit he was wrong would hurt his ego. After all, doctors are still only human and have flaws just like we all do.
But when these are people who specialise in the brain, and they struggle to agree how its changes are affecting you, it’s not surprising that doctors who focus on other areas can appear so dismissive of how a brain injury could be causing some of your symptoms. Having said that, I recently saw a gastroenterologist about some issues I’m suffering with, and he was immediately sympathetic to the fact that I had a brain injury. He went on to say that it was likely that my symptoms were connected to it. So not all doctors dismiss it, and it feels so vindicating when they acknowledge it. The treatment I am receiving for this condition isn’t any different because of it, but it gives me so much more confidence to feel heard. Please note this doctors; we just want to be heard. Thanks.
Nothing in this blog should be taken as providing medical advice or recommendations. Please always consult your doctor for medical advice and before taking any medication or supplement. Any opinions expressed in this article are of the author and not CFG Law Limited.