Ironically I had my injury with immediate CTSCAN and post concussion diagnosis with no advice whatsoever while I was the full time care giver for my formerly brilliant scientist husband who had been diagnosed with Early (younger) onset Alzheimer’s.

The good news is I learned a lot about the brain. The bad news in I was living in an extremely stressful situation and all my attention was on creating the best possible experience for my husband.

It wasn’t until after he died in 2014 that a Brain Counselor told me I had a “brain injury!!! I protested and was stunned. Long story resulting in huge amounts of stress over four years and resulting in an increase in my symptoms. In bed for days with headaches, severe short term memory loss, anxiety, depression, balance, impulsive in my trust of others resulting in being taken advantage of while I was every time simply amazed that not everyone was as empathetic (too much so) as I.

But I’m still struggling with dwindling hope. But sad, lonely (no family) or any friends in my current town. Trying desperately to move while dealing with badly done renovations and extreme fatigue and exhaustion.

Too exhausted to continue thank god as rambling is a consistent complaint from doctors.

I am very confused by this statement?....You were fine or just preoccupied to know you had a brain injury?

Its wasnt till a Dr. told you you had one the symptoms showed up?

No, I see I was rambling As per usual and assuming others know what I know About my own background. Sorry about that. I have been diagnosed immediately with postconcussion syndrome but it was never explained to me as anything serious nor was I given any instructions Such as to rest etc which I’ve learned since should be advised.

I had Severe headaches for which I was given Vicodin and short term memory loss and a complete inability to read. My PCP told me this was typical and would go away soon. When it didn’t he ordered an MRI which he said he was sure would be normal. Later reading my medical report I noted he wrote “patient should be patient.”

When it came back abnormal he sent me to a neurologist who was insulting as hell and brushed me off asking me to have another MRI in a month and return. NO THANKS.

Odd as it may seem now I never thought of this “soon to go away” post concussion thing as a brain injury. Later one Brain type doctor read the original CT Scan and noted that there was a skull fracture not mentioned in the IMPRESSIONS, which is why it is important to have the original scans and not just the summaries which can be incorrect.

Explaining is very difficult for me and irritates doctors but ten years of explaining ....

effysmom,

To start with, you were given some bad information. Post Concussion Syndrome is not a proper diagnosis until symptoms persist for 6 to 8 weeks after the concussion. All of the give it time, patient be patient, were bad advice.

But, that is the past. You need to start from now. You cannot do anything about missed diagnosis, bad CT reads, etc.

So, YES, it appears you have a brain injury. That is not the end of life. Many of us survive and move forward with our lives.

Without getting too deep and overwhelming you right now, I have two comments.

1. You have neurological dysfunctions. As difficult as it sounds, it is important that you try to accept them as the new you. There are many things you can learn to do to move forward in a productive way. Understanding your specific struggles is very helpful. A Neuro Psychological Assessment will be very useful at understanding your functional state.

2. The first thing to do is realize that writing on forums like this may be one of your best ways to express yourself and get support. When our memory fails and we struggle to stay on subject, writing can be an enormous help. The key is to not hit the Post button until we have proofread our comments. We can sort out our thoughts by rereading them. Cutting and pasting to organize our thoughts can be a great help at sorting our thoughts.

I would encourage you to start a journal of your thoughts. Start by just writing down anything. Go ahead and ramble. Then, sort those thoughts using cut and past to create a more ordered expression of your thoughts.

When I first needed to sort things out, I would have two documents open at the same time. One was ramblings. The other was more organized. I would move text between them.

I considered this my short term memory hack. I have very poor immediate and short term memory. I also cannot juggle multiple concepts. My brain is usually limited to A or B, not A or B or C or D. I can sort through written concepts far better than I can sort through concepts in my mind.

btw, The fractured skull is often a good sign. It means the skull deformed as it absorbed some of the impact. A deformation of 1/8 to 1/4 inch can reduce G forces by 50%. It does indicate the impact force was strong, though. But, a fracture without a residual deformity does not create additional brain trauma.

Have you had your vision assessed by a Behavioral Optometrist? They do not assess acuity, the ability to read an eye chart. They look at how the eyes work together and process the images. It is often a part of a brain injury that is missed by Medical providers.

Many neurologists are not the best at helping people like us. A specialist in Physical Medicine and Rehabilitation sometimes known as a Physiatrist can be better. They are often affiliated with NeuroRehabilitation hospitals. Do you have a Neuro Rehabilitation Hospital near you?

I hope we can help you sort things out. I think we can.

When you reply, please use the Post Reply at the lower left rather than the Reply button at the lower right. It makes it easier to read the comments.

My best to you.