Our 17 year old daughter died on Feb.23,2002 of a brain bleed (AVM). We did not know she had this condition, until she collapsed and lost consciousness. After 5 days in ICU she was brain dead. Her AVM was at the base of the brain stem in the pons area of the brain. She had no symptoms before this happened.
However, at age 13 her personality began to change drastically. Normally a shy, happy girl and a good student, she became truant, hostile, developed runaway behaviors, and could not be reasoned with. She was seeing a therapist and social worker who were not able to help her with her problems because she absolutely would not open up to them. These problems persisted until her death.
My question is - can an AVM cause personality changes? It seems to me that if there is a lack of oxygen to some parts of the brain, this is possible. I have asked this question to three professional - her neurosurgeon, her neurologist and another neurologist not involved with the case. They all said it was not possible. But as a mother,I know my child and her personality changes were so drastic.
Her therapist and his supervisor conferred and gave her a test to determine her personality profile. They felt that she was extremely immature for her age and very vulnerable and had very low self esteem. She also believed nothing bad could happen to her and she was never to blame for anything she did wrong.
I know this is a very long letter, but it is extremely important for me to know if it was possible for an AVM on the brainstem, could cause personality changes like these. I loved my daughter very much. She was our youngest child. We miss her so much. If we could make some sense out of her last 3 years it would be of some comfort to us. PLEASE reply. Thank you so much.
Update: 18 Sep 2002
I want to thank all of you who responded to my questions about personality changes in a person with an AVM. I am so grateful to all of you who took the time to try to answer my questions. All of you are also hurting and suffering with your own problems and grief of one kind or another. Yet you took the time to try to help me. Thank you so much.
My daughter was 17 when she suddenly collapsed and was taken to ER by ambulance. She had no symptoms other than a couple of mild headaches a couple of weeks before. She also had mentioned once that the back of her head hurt. But no one really thought anything of it, because it just went away and was not mentioned again. The admitting doctor in ER said they didn't know at first why she was unconscious. Of course they right away thought it was a drug overdose. (She had been with friends when it happened.)
The drug screen was negative as I knew it would be, and then they did a CAT scan and discovered that she had a brain bleed and that it was probably an AVM. I had never heard of an AVM before and the doctor explained it all to us. He said it was at the base of the brainstem and was very serious. He said she could die from it. Then the neurosurgeon on call came in. He said he was going to put a shunt in to drain the blood . He said also that it was an AVM and it was in a bad place-at the base of the brainstem. There was no way he would do surgery because of the risks involved to the rest of the brain.
Right away I asked him what he thought her chances for recovery were and he said very good. He said he was very hopeful because of her age and health and that she would probably only have a little deficit on the right side. The shunt was put in and she was sent to ICU, where she was given excellent care by the nurses. She was on a ventilator because she had been gasping for air when she was brought to ER. She was hooked up to all these machines and it was very scary. The PA kept saying she would come out of the coma in a day or two. We hardly saw the neurosurgeon at all. There was some question about whether she was sedated or not. No one seemed to know. They finally said she was sedated at first, but not any more. So she should be coming out of the coma.
The neurosugeon did tell us that there was a procedure with a gamma knife that they could do. But she would need to recover there first. He made it sound like this was the miracle answer and once this was done, there would be no side effects, and no more problems. She would be cured. He only said there would possibly be some right sided deficits as she was not purposely moving her right side. When she first came in, she moved her left side purposely, but that stopped after a few days. To make a long story short, we were all made to believe that she would recover and she would be back to normal after some rehab. We even thought maybe it was a new beginning for her, considering all the behavior and social problems she had before she had the AVM. We were never once (after the ER doctor) told that she might die-that this was a real possibility.
She didn't regain consciousness and on the 3rd night, she began having terrible seizures while I was with her. I tried to hold her, but they were very strong. The nurses tried all kinds of IV meds to stop the seizures, but they continued for hours. Even after the tremors stopped she still had these terrible jerky eye movements. Her neuro had been called several times. Finally a neurologist on call came in and looked her over and checked her pupils and reflexes, looked at me and said nothing and left. They did more CAT scans, and an EKG. They repeated this again. One of the PA;s said something about vasospasms which I did not know what he was taking about. He said we'd just have to wait and see.
On the 5th morning,when we came in at 6am to see her, the nurse said she had noticed some neurological changes and that the neurosurgeon had been notified. She said they were going to do another CAT scan and then the doctor would talk to us. Well - when we went back in the room to see her, the doctor was there and he told us that she had taken a turn for the worse and that it was apparent that she could not survive this. As all of you who have experience this know, it felt like my heart fell to the floor.We were devastated. All of this time, we had presumed she would be OK. She was brain dead and after all the family had come we had her taken off the ventilator.
Jeanne (Jeannie) had been a wonderful little girl. Happy and funny and full of life. Her problems started when she was 13 and in middle school. First we thought it was the usual teenage moodiness and hormones. But her grades fell to D's and F's and she refused to go to school. She ran away, she rebelled, she could not be reasoned with. She fell in with a bad crowd. She had a checkup, she started seeing a counselor, and then a social worker because of the truancy and runaway problems. None of this worked. She rebelled against all of them. She spent time in Juvenile Detention several times. She was on Home Detention. After she ran away the 5th time and finally came back home, we just kept her home - trying to give her the love and protection she needed. The counselors and social workers and police couldn't help her. Maybe we could. But then she had the AVM.
Now because of all of your kindness and responses, I now KNOW that I was right. That Jeannes' behavior problems were partly caused by the AVM. There is no doubt in my mind. No matter what the "professionals" say. There is so much that is unknown about the brain. No one can know all the answers. The terrible loss is still here, but we are comforted by knowing that our instincts were right. It wasn't all just rebellion and stubborness. She was struggling with a much bigger problem that none of us knew anything about. I don't blame anyone. Who would know? She had no symptoms. But I do have some hard feelings toward the neurosurgeon who was not honest with us. When I confronted him about this he said that some doctors tell you the blunt dark facts right away, and then there is no hope. He said he has hope until it hits him in the face that there is none. But isn;t there a middle ground?
I would like to have known the truth-no matter how bad it was. There is always hope. We know we did our best by Jeanne in her short life. We will try to remember the good times and know that where she is now, there is no unrest, or tears or anger - only peace and happiness. And we will see her again.
Thank you all so much. I will keep all of you in my prayers.
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