Carrie’s Story (Chiari Malformation)

My daughter is 16 and was diagnosed last year with Chiari. This came about after many, many visits to her doctor, neurologist, and 3 MRI’s. She has daily headaches, migraines, neck pain, is always off balance, has a sore body, and is very moody (more so than normal teenagers). She would get picked on by friends for not going out with them after school. Instead, she would come home and go right to her room and lay down. They and her siblings did not get that she was always in pain, always tired, always sad. She thought she was losing her mind, going crazy, because she was feeling all these things wrong with her, and no one would or could understand what was going on.

Finally, after a year and a half and her third MRI, her neurologist told her that she had Chiari and that she should see a neurosurgeon, but that her case was very minimal. After another MRI with her neurosurgeon, he felt it would be best that we monitor her for three months. We had to write down every headache, every food she ate, what she did every day, etc. We went back in May, and he read her “journal” and decided decompression surgery would be best. She goes in for that in July.

I have noticed a great difference in her since finding out her diagnosis. She is a lot more depressed and does not want to talk about the Chiari. Her boyfriend broke up with her, saying it isn’t her, but she feels that it’s because she told him about the surgery. I am trying to keep her upbeat and happy, but I’m finding it very difficult. I’m trying to tell her she is not a “freak” and that other people have had to go through what she is and it will be ok. It seems like the more I try to help her, the more upset she gets. It stinks being a mom and knowing you cannot help your daughter feel better or take her pain away. Any ideas?

Carrie
New Hampshire
Submitted 06/04/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.