Hi, I am new here. I have been reluctant to share my story because I think talking about it a lot keeps it in the forefront of my mind and I can never let it be like a bad dream that I will soon forget. As a result, my experience with the brain tumor as well as everything else at least fifteen years before then seems like it happened last year, every year. This constantly messes up my perception of time. My injury was precipitated by ten to fifteen years of misdiagnosis and neglect for a benign brain tumor called a Colloid Cyst of the Third Ventricle. I was encouraged by another member of this site to share my story as it might help others.
Here it is...
In late September of 1999, I was diagnosed with a Colloid Cyst of Third Ventricle. During my first appointment, my neurologist could not believe that someone with one of the hallmark signs of this tumor/cyst, papilledema, was not "passing out in pain" and subsequently misdiagnosed me yet again pending the results of a CAT scan. He did not know that I had been overdosing myself with 600 - 800mg of Ibuprophen regularly, around the clock. That was the only way that I could keep the pain under control in order function daily and live my life as normally as possible. My optometrist, who had the opportunity, and should have had the skills, to be able to spot the papilledema did not even entertain the possibility of intercranial hypertension affecting my optic nerve and hence my vision. My vision was getting steadily worse year after year as the headaches became more and more severe finally ending with alternating episodes of partial or complete blindness as well as other visual phenomena.
During the first surgery to remove the tumor, I suffered a brain injury as a result of a general surgeon assisting my neurosurgeon (a big no-no) retracting too roughly in my brain in order to provide an open field for my neurosurgeon to remove the tumor. As a result, I apparently had one or two hemorrhagic strokes which left me nearly paralyzed on my left side and with no memory (short term and long term) for a year and a half. Then because of the route the Neurosurgeon chose, I developed a seizure disorder, which was only supposed to be temporary. Twelve years later now, I am still taking anti-seizure medication. The last casualty of this whole experience is the breakdown of my 13.5 year marriage. I was warned that many marriages don't survive this kind of trauma.
Also, because the tumor went misdiagnosed for so long, the pathway for Cerebro Spinal Fluid to flow throughout the brain's ventricular system was completely and irreversibly occluded by the tumor. After the removal of it, it was discovered that the hydrocephalus would remain. Therefore, bilateral ventriculo-peritoneal shunts had to be placed, replaced, and revised several times due to the lack of experience and skill of the neurosurgeon in shunt surgery. Finally, they got another neurosurgeon, a pediatric neurosurgeon, experienced in shunt surgery in babies and small children, to finish the job. I needed no further surgery.
As a result, after the first surgery, I was left nearly paralyzed on one side of my body, with no memory (ST & LT) for a year and a half, and with a seizure disorder. Then to add insult to injury, because I was hospitalized for so long in the ICU and basically immobile, I developed two pulmonary emboli, one in my neck and one in one of my lungs. I then needed to have a filter put into my inferior vena cava to prevent clots from going to my heart. I was also kept in a medically induced coma to prevent me from fighting the anesthesia and the respirator.
As far as I can tell from this journal, I was a frequent flyer in and out of the hospital for around six or seven months. All in all, I had around a dozen surgeries within that span of time.
When they were finally done cutting my head open, I was sent to an outpatient neurorehabilitation facility to have speech, occupational, and physical therapies. With them and with a lot of hard work on my own, I am probably about 90% of what I once was with some residual weakness in one side and with intermittent memory problems, which are exacerbated by anxiety and/or stress and a lack of sleep.
I have been trying to go back to work since around 2006 when I was finally given the okay to return to work, but because of the gaping hole in my resume now, I assume, the only responses to my resume submissions have been rejection letters. All of the skills that I acquired from over twenty years of work experiences are no longer relavent and I have to start from the beginning again. I am not even confident in my abilities and that I won't have memory problems still, including confabulation.
As a result of all of this, I lost my job, my ability to skate and compete on the adult synchronized skating team that I had only just joined two years prior, and I was saddled with a seizure disorder, to name a few.
I don't understand why a brain injury, which causes this much devastation in a person's life, isn't considered traumatic.
