Stories of Bad Medical Advice
The following are stories of real life survivors of brain injury. Clicking on the titles will take you to their actual story.
Seizures: People think of seizures as the profound shaking and foaming at the mouth that does occur with a grand mal seizure and such seizure is a significant risk from a coma injury. Yet seizures come in many other varieties as well, including what are called “absence spells” where a person seemingly fully conscious and aware, loses time, gets lost confused, with no recollection of what occurred. See http://www.epilepsy.com/epilepsy/Types_seizures That has happen to Betty, although not with the frequency it did in the early years of her recovery.
Emerging from her coma was nothing like one would see on television. For her it was slow and unpredictable process. Making the coma more difficult for her mother was that the information she needed wasn’t forthcoming from the doctors. Worse, an intern stepped in and told the family they should consider removing life support, even though that was not the treating physicians opinion. When the neurosurgeon learned of the interns actions, he quickly reversed this advice he got more actively involved, telling the family that at nine days it was way too early to give up hope of emergence.
DJ talks about the poor treatment and advice that was given to his doctors: “The next three months I was sent to two three neurosurgeons, none of which checked the shunt’s programming, however Communicare kept reporting that the valve setting was checked and found to be with the setting it was supposed to be. NO, no it wasn’t. I made It clear that I needed my records. That opened up my whole world and to this day I know more about my brain injury than my current set of doctors. The shunt can be Magnetic Resonance Image, but there must be an immediate follow up after the MR scan to check to see if the magnets changed the valve setting. “
“I told them about my background. I was in “like I tell all the people that are going to hire me ” car accident, coma; I’m on medications. At that time my second psychiatrist, who is actually, well I won’t go that far, you know, but he didn’t understand. They just treated the symptoms. They didn’t treat the causes.” Michael’s failure to get proper brain injury care from a psychiatrist is more the rule than the exception. To get a feel for how far behind brain injury science psychiatry is, all one needs to do is look at the still considered a “research” definition that the DSM-IV contains for Post Concussion Syndrome. In the American Psychiatric Associations Manual of Mental Disorders, a loss of consciousness of greater than five minutes is a prerequisite for a finding of PCS.
But for all the miracles, neurosurgeons are lousy fortune tellers. There is no science which can tell us who will awake, who will not. Until a coma has persisted for significantly more than a month, the wives, the mom’s, should continue to insist that there is hope.
Have you had a sleep assessment?: “No, I was told that, uh, it wouldn’t do much good.” Who told you that?: “Uh, the physician. It was the physician that I go to (family practice). He said that a sleep study would be for sleep apnea, other things but for a brain injury it wouldn’t tell us much of anything.” This highlights a major problem in the gatekeeping role that insurance companies have now placed on family practice doctors. They simply do not have the experience or expertise to be making these kind of decisions, particularly with an injury as serious or complicated as a severe pediatric brain injury. While sleep may not explain all of her fatigue issues, it needs to be evaluated. Fatigue after TBI can come as a result of how hard she has to concentrate to do anything, but there can be no doubt that a poor night’s sleep puts her behind from the beginning of any day.
He comes home, after a week, and there’s a crisis. Tell me what happened.: “I did not even want him to come home, at that point. I could tell he was getting worse, the last few days in the hospital, but I didn’t know why. I didn’t know what. I had significant disagreements with the staff, medical staff taking care of him; and despite all of my efforts, they still
insisted that he come home.”
At a time the brain is in the deepest crisis, in a struggle between recovery and decompensation, care may be denied because the brain isn’t fit enough to handle a predetermined amount of rehabilitation. That was the justification for keeping Rita “parked” on a floor, only one flight of stairs away from talented therapists who were not overworked.
And they didn’t want to see her while she was the most severe, most grave?: “Yeah. You know what he said? He said tell those doctors to do their job. That’s what he said. Tell the doctors here at Community to, to do their job.And you know what? They were trying to do their job. The one main doctor that’s on staff here, she’s the doctor on staff. She doesn’t have an office anywhere. She’s the doctor for this hospital. She had every kind of doctor possible coming in with doing all these tests trying to figure out what was wrong with her, and basically, it was a urinary tract infection, which she had at Bayfront, which we knew.”