I have heard so many news reports lately on new studies being done and new recognition being given to brain injury to soldiers, in sports and as a secondary injury in a crash. Why now? Why has it taken so long? Some of us have been here for years but nobody wanted to do anything about it but control the symptoms (the seizures), pat us on the head and send us back home. There is so much more to it then that....
Okay I started this blog with a brief overview - now I will go back and add some detail. I did something stupid - it was my fault and I will own that. It resulted in a concussion, a bleeding injury to my scalp and a fractured skull (which went undiagnosed). There was also an undected blood clot that formed at the location of the fracture in the temple area (a bone joint of the skull that overlapped on another bone). I was hospitalized a couple of days for the concussion and the scalp injury on the back of my head and then sent home.
It was a full year later that I began to suffer brief blackout spells. I was accused of not paying attention or of day dreaming. I was totally unaware of what was happening to me at that point. As time passed I began to become aware of the blank spaces in time. I seemed to often miss entire conversations and events - even though I know I was there. Since I was a drinker (I liked beer and sometimes abused it) I often attributed the blackout spells to that - which may have been accurate or not.
In the third year out I began to experience the grand mall type seizure. These were followed by excessive exhaustion and a need to sleep. I still had no awareness of what was happening to me - I had to rely on the reports from others as to what I did. I was agitated following one of these and apparently quite abusive to anyone around me, until I had time to sleep. This was when my children became afraid to be left alone with me. They witnessed the seizures and the aftermath. To this day they don't like to talk about that time in our lives and family.
My family doctor had been trying to help me figure things out and find a solution but when I began to wake up in places I didn't remember going to, with wet pants (losing bladder control) - he said it was past time for a specialist. So off I went for the series of appointments and tests at the university hospital in our state. Those tests and appointments dominated the next year of my life.
The Neurologists had no problem diagnosing a condition of Epilepsy and beginning me on a course of meds to control the seizures. The problem they had was telling me why. That did not seem to be important to them but it was of primary importance to me. That pissed me off then and it still pisses me off. "Why" should be the primary question and may even help lead to more effective control of the seizures.
I argued and struggled with the doctors on this issue - even after we seemed to have found a good balance of medications to control the seizures. Finally, in about the 5th year out, there was an intern who took particular interest in my question. He asked permission to simulate a mild seizure and have me explain what I felt and saw. Remember - until now I had no idea what I did or what led up to them - all I can remember is being exhausted and a bit of a bitch until I had some sleep.
Now that someone was really listening to me and was willing to help me try to find out "why" I felt safe enough to trust him. The intern placed a drop of ice water behind my ear drum.......the room was spinning and my muscles were so tense I couldn't move and I was scared to death. The feeling passed fairly quickly and I told him as much as I was able to be aware of. He did not induce a seizure but you could have fooled me. If that was what I could have been feeling (if I had been aware of what was going on) I think I would rather have been dead....and I told him so.
He thought he could see something in the x-rays that warranted a closer look and might answer my questions. I was scared but getting an answer was that important to me. Fiber optics were fairly new back then and not used as often as today but he thought that would give us more information. The fiber optic camera was inserted through my ear and in to my skull. Sure enough there was the fracture - clear as day. In the temple area one bone of my skull had slid up over another bone and a large blood clot had formed on my brain in that temple area.
He had thought that on the X-ray the bone joint in that area had looked too wide to be normal and the overlap was why - but because it was at a bone joint of the skull it was not easy to see unless being looked for. The camera also showed that the blood clot had deteriorated and it was his suspicion that the tissue there was now non-functioning scar tissue. His thoughts were that when the blood clot began to deteriorate was when I began to experience the seizures and that they increased in intensity and frequency the more that it deteriorated leaving non-functioning or scar tissue in it's place.
Like it or not and totally accurate or not .............It was an answer I could understand. It was a "why" that made sense. I could live with that. I asked him "what next?". He suggested that I stay on the course of treatment I was on and to contact the hospital right away if anything changed. I had never linked the seizures back to my earlier injuries - and neither had the other doctors. The time in between the two had been so long. The intern tied them together and found the answer to what had changed my life so dramatically.
I loved that man and I will be forever grateful to him for hearing me, listening to me and then helping to seek an answer that I could accept and live with. That changed my life far more then the meds have done. Knowing you aren't crazy is more important then all the medications, anti-depressants and psychiatry in the world......
That was in 1975. I remain on the same medications (generic versions) in 2012. When I revisited that same university hospital in 2005 and sought a re-evaluation to see if there was still a need for these meds or if there were other meds that were better - they asked me if these worked. When I said yes the neurologist asked me why I was there. He said he could run all kinds of tests and try all kinds of meds but it would cost me a lot of money and he would not do it in a clinical setting so that any adverse effects along the way would not lead to the loss of things like my Driver's License - which is necessary for my income.
So here I am today - still taking Primidone and generic Dilantin........and not having any seizures. Don't have a whole lot of my own teeth left (side effect of Dilantin they don't tell you about) but not having seizures and still able to work.......and wondering how long they will keep working as I age. Is anyone looking at us "long term" brain injuries - or just the new ones?
We can save them a lot of time if they were to listen to our stories and see the time pattern.
May today be a good day for us all.......
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