In February of 1991 my sister, then 34 and a single parent of an almost 3 year old daughter suffered an AVM, with right brain damage. The facts leading up are mostly unknown, as she has no memory whatsoever of the AVM. However, in the days before she mentioned to a friend "did you ever have one of those bad headaches that just won't go away?"... The morning of, she called my sister who lives nearby to say "I've just called the ambulance, I have such a bad headache I can't stand it". My sister headed the four or five blocks to her apartment, to find the rescue squad pounding on the wrong door. In the less than ten minutes it took her to get there, Ginny was already unable to get up and get to the door to let anyone in. Luckily, Carol had a key. Ginny was sitting on the couch rolling her head back and forth and moaning in pain. She had apparently risen early, as was her habit, to do a Bible study, but her coffee was spilled and chair tipped over as if the pain had hit suddenly. Thank the Lord she had the time to get to the phone and make those two calls.
The rescue squad seemed to think it was some kind of drug overdose, but took her to a hospital which did a brain scan, and diagnosed the AVM. I received an emergency call at work, and headed out for a two hour drive not knowing what I would find when I got there. My parents were contacted in Florida, and made panic-stricken emergency plans to fly North to Rochester, NY.
Ginny was in a coma for two or three days, and only very slowly came out of it. It was weeks before she could concentrate on a person or conversation for more than a few minutes. I believe she lost almost all of her memories of her daughter, although she was a good parent before this. She unfortunately suffered an injury in the hospital, when she was left unattended for a time on the table awaiting a brain scan, and fell, hurting her left thigh and suffering an incredibly painful blood clot. She could not be given blood thinners to treat the clot because of the brain bleed. The doctors surgically inserted a mesh screen to prevent the clot or pieces from traveling out of her leg and causing a stroke. To this day she walks with a limp, and dragging left foot, but I don't know how much is due to the left side paralysis from the brain injury,and how much from the fall.
Ginny had months of inpatient therapy at Saint Mary's in Rochester. She learned to walk again, and worked on regaining agility with her hands. However, she has clearly suffered permanent brain injury. She has "left neglect", and although she has been trained to compensate some, she will never be able to drive a car, even if her SSD benefits would make it financially feasible, (hah!). But she rarely gets lost anymore when the location she is searching for is on her left. It is still a problem. Her short term memory loss makes it difficult to remember where she puts things. She did have outpatient rehab to teach her some life skills, but it continues to be a struggle. She never had language problems, as there was little left brain damage. However, she has trouble with controlling her anger. She has a great deal of trouble in setting and enforcing reasonable limits for her daughter, who has been living again with her mother since 1994. Her daughter is a strong willed child and difficult to manage.
Ginny was on anti-seiziure meds until two years ago, even though she had never had a seizure. We had to finally ask to have it discontinued, as it caused her to fall asleep unpredictably. She was frightened of having a seizure, but has had none. We live in a rural area now, and she has absolutely no follow-up or continuation of care. I worry...will she still be at risk of future AVM's? She is a chain smoker. Not good, I guess. But she absolutely will not quit. There are no services here. Our local ARC has supposedly started a program for victims of traumatic brain injury, but hasn't returned any of her or my telephone calls. Is she too high functioning? When she lived in Rochester until fall of 96, she worked part time through VESID and really enjoyed working. However, she needed to move to my rural area, so I could provide support and some supervision, and because it was a safer place for her young daughter to live. She likes it her, but is frustrated by the lack of public transportation. She would also like to work some, but needs a job coach or a supportive environment, without which an employer will become frustrated and not bother. This injury has changed the loves of all of us...Ginny, her daughter, her sisters, her parents. I wish I did not feel like she was dumped. She has continuing needs, and permanent problems.
Update 20 Apr 1999
Ginny is coming along. I sure wish she had some follow up of her brain injury. No one in the counseling or medical field seems to understand or care that she had a brain injury. I don't know how, with medicaid, to get an evaluation to see if there is a risk of a further bleed. I thought it would never happen again, but that doesn't seem to be the pattern , does it? Especially since she had no surgery or treatment for the AVM itself...just told it blew itself out. No hint it could grow back.
Because of Ginny's weak left side, she fell and broke her left ankle AGAIN...badly this time, had three pins inserted and a cast almost up to her crotch...really heavy and uncomfortable. She has no balance, and so can't use crutches, only a walker. She fell the first night home from the hospital, and cracked bone. OUCH. She is so depressed and angry about this setback. Please pray for her , both for physical and mental healing.