Hi everyone,

It's now been 8/9 months since my injury and PCS is still a huge daily problem for me. I went for a neuropschological aseessment a few weeks ago and just got the results.

It confirmed that what I was suffering was genuinely PCS even though I had been told this by both my own doctor and a neurologist. However it says also that there is no damage or injury to the brain. What I don't understand therefore, is exactly what PCS is on a pathological or physical level? Is it something physiscally wrong with the brain or not? And if it isn't, why is it there and cause these problems?

Certain aspects of my neuropsych results are really good, my verbal comprehension and communication for example which was in the 95 percentile (so better than 95% of people?). However, areas like my performance IQ was 14 and my processing speed was in the 4th percentile. So my thought is there is clearly something wrong there, but if they say it's not physical damage then I'm wondering what it is.

On a slightly separate note the thing that I've found near on impossible since my injury is reading. I can read for about 10/15 minutes before it makes me feel so nauseous, dizzy and headachey that I just have to stop. I've been trying to build up reading for slightly longer periods of time but it just makes me feel so awful. I can read broken up text or short things but paragraphs and books are another realm entirely.

Unfortuantely for me I'm in the middle of a literature degree, albeit on a break until this all gets a bit better. I'm worried about being able to go back. Has anyone had similar reading problems, and if so, how have you adapted to get around them?

Thanks,
Hattie xxx

Hattie,

Sorry to hear of your struggles. But, with a neuro-psych assessment, you can start to move forward.

Your neuropsych assessment sounds similar to mine. High IQ but very low processing speed. Both neuropsychs said I had depression as a cause. They were both wrong.

A problem with neuropsychs is they try to mix neuropsychology with poor understandings of PCS physiology. <However it says also that there is no damage or injury to the brain. > Could it be that they made this comment after seeing you medical records about the imaging studies done?

Or, some neuropsychs have a biased belief that high IQ indicates no brain damage. This is dead wrong. They have failed to read the research that shows divergent scores (high IQ with low processing speed/memory etc) is a direct indicator of organic brain injury. Studies show that a devastating brain injury that shows a serious loss of other neuro-psych scales can have only a ten percent drop in IQ. IQ's tend to be very resilient.

What is more important is the symptoms they have validated. The slow processing speed is likely the reason for the fatigue from reading. I have the same problem.

How were your visual memory indicators?

The task before you now is to learn work-arounds and accommodations for your deficits. I have not found a solution to my reading problems. I have discovered that I can read factual writings that have a linear flow of facts. If I try to read fiction or overly descriptive works, I get overwhelmed.

The results tell you one thing that is important. You are not imagining these symptoms. You are not going crazy or losing your mind. You are injured. You have very specific dysfunctions.

Your pursuit of a degree in literature may need a different angle of attack. Your memory scores may be an indicator of your likely success.

With your IQ still intact, you should be able to have some areas of high function. It can be frustrating for this high functioning to occasionally bump into a brick wall. But it is likely the life you have to learn to live with.

Embrace the NEW you and move on. Find the new ways you need to learn. You old learning skills are damaged and ineffective. This does not mean your eduction is over. It has just changed a bit.


My best to you.

Please google Post Traumatic Vision Syndrome and see if you think it might apply to you. I'm getting seriously repetitive on this site, but it's important that people know that vision therapy can make a huge difference for brain injuries. Not everyone, of course, but it is easy to test for and if it can help it is worth the effort.

My daughter basically couldn't read for three months. Once she could read again she couldn't do so for very long without the words "jumping around." Algebra was a nightmare as numbers traded places with symbols and they all "dosey-doed" around the page. She had nausea, lightheadedness, headaches, fatigue, etc. Vision therapy has literally changed her life.

In the meantime, we learned that many public libraries have audio recordings of books you can download directly to your I-Pod for a set period of time. Not sure if your specific books would be available but its worth a shot!

Hang in there...

Hi Hattie,

I am really sorry to hear what you are going through.
I also have had a car crash and suffered post-concussion symptoms afterwards. Given that everyone is different genetically, our brains are different and the traumas suffered are different, it is remarkable that so many post-concussions symptoms are so similar and so easily recognisable by those of us unfortunate enough to suffer from them.

"Nauseous, dizzy and headachey" you say. This sounds all to familiar and though you might find the symptoms difficult to describe to those who haven't suffered from them. Those of us who have know exactly what you are talking about.

So: "Is it something physically wrong with the brain or not?"
Yes, it is. Definitely.

So if someone tells you that there is nothing physically wrong with your brain, perhaps what they ought to say is that there is nothing physical that could be detected with a brain scan i.e. with the resolution available with an MRI all your brain parts would look undamaged.

However, you cannot see individual neurons with an MRI, nor can you detect biochemical changes what can occur in a trauma. Psychology tests are done by psychologists and a psychologist will tend to give explanations of a patient's condition in terms of what they know i.e. they may give a psychological explanation or they may say that the symptoms likely have a neurophysiological or biochemical cause which is outside of their expertise.

I have had two sets of neuropsychology tests. The first was one year after the car crash and most of my results put me, like you, in a high percentile. Interestingly, the one that was not was my processing speed, interestingly also like you. I have just had the neuropsychology test redone (nearly three years after the accident) and my processing speed seems to have returned to normal. Hopefully you processing speed will also improve with time.

On reading: I didn't have much problem after my accident with reading normal text. However, I had experiences very similar to yours whenever I tried to read music. I play the piano, not very well. But after the accident I could play only about one page of music before it made "me feel so nauseous, dizzy and headachey that I just have to stop." I quote from your experience trying to read text. Mine were the same when I tried to read piano music.

As I do not read piano music very well and certainly not as easily as I can read text. I suppose the extra effort that my brain had to make was just too much for it. This too has greatly improved over the last 3 years. You are much younger than me, so it shouldn't take you so long.

All the best,
CS

CS,

Your struggle to read music sounds logical for a PCS subject. Your brain needs to visually process the image then translate that image to a key stroke/note, then motivate your motor control to play the note. This all while trying to keep proper time and play with the other 9 fingers. That is a lot of multi-tasking going on.

If you were a much more accomplished piano student, your brain could have likely skipped some of the middle steps and gone directly from image on the paper to muscle memory.

I have a difficulty translating speech with heavy accents. If I get customer 'support' in India, my brain needs to first decipher the accented words to an understandable word. Then, I need to make sense of the sentence. I can sometimes do this for a short period but usually get fatigued and irritable.

Thus, I just ask for a person who speaks English as their mother tongue. Some people will call me racist. Others will understand. Some even clean up their accent to a more understandable English.

I explain my request by stating that I have an auditory processing disorder that makes it difficult to understand accented speech. Some will know what this means. Others....

When we understand the mechanics behind some of our struggles, we can better adapt to our dysfunctions.

Thank you for all your help and advice from this thread.

I googled post traumatic vision syndrome and it sounds very similar to the problems I have. I'd really like to have it checked out just in case there's anything I can do about it to help. However, I searched vision therapy and can't find anywhere that does it in the UK. Is this a problem that normal opticians can recognise by doing a standard eye examination or do you need to see a specialist?

The neuropsych report is very difficult to understand! Too many numbers and not enough explanation about what they mean! My estimated pre-morbid IQ is between 125-130 whilst now my full scale IQ is 97 (average between verbal IQ 107 and performance IQ 84). Although this is in the normal range, it's estimated that I've lost around 25-30 IQ points and that's without going into specific areas of difficulty like the working memory and processing speed. Is this something which will come back?

My main worry is going back to my degree. My reading problems aside, I still don't know whether I'll be capable of the level of academic thought I was before, and if not, how I can try to improve it. I noticed this when I went to see a play last week which I studied last year at uni. I could understand the linear plot and the words, but any forms of higher meaning was lost on me. It just seemed pointless and nothing more than a story.

Thanks again and wishing you all well,

Hattie

In our case my daughter saw two different neuro opthamologists who both said, "there's a problem...give it a year or so". Our family optomitrist said, "there's a problem, someone can help". Then we found a vision therapist.

I think most optomitrists could help you determine if there is a problem, but you would need an experienced vision therapist to help you treat it. They work with special computer programs, devices that force you to keep both sides of your brain engaged, and machinery that forces you to keep your eyes focused while you are in movement.

Vision therapists do some very simple tests that optomitrists don't do in routine exams. Walking a straight line, for example, or drawing a line with a pencil in each hand and trying to meet in the middle. It gets more complicated, of course, but these are things your basic 20/20 vision screening will miss.

People's brains play tricks on them to tell them everything is ok, even though they are seeing things move that shouldn't be moving, they see little shadows flying across floors, they are seeing double, etc. These tests go around your brain's compensatory tricks and reveal real problems with vision.

You might try this website if you haven't already: http://www.nora.cc/

Good luck--