September is Brain Aneurysm Awareness Month October is AVM Awareness Month. We never thought these 2 medical conditions would affect our family in such a way. In January 2021, our oldest (she was 10, almost 11 at the time) began complaining about some vision issues (she also took a nap…you have to understand…this is my kid who NEVER takes a nap, even as a baby…she also fell and said she couldn’t get her food to her mouth…this all happened in a 2 day period).
Due to my husband’s brain condition, we immediately contacted the pediatrician and she sent us for an immediate eye doctor appt. The eye Dr appt couldn’t see anything but both doctors agreed that an MRI would be best. Early February we went for an MRI. We were called within a few hours to say that we had to meet with a neurosurgeon the next morning that our daughter had an AVM located in her right occipital lobe. AVM stands for arteriovenous malformation.
Within weeks we found ourselves meeting with multiple neurosurgeons and neurologist with multiple MRIs and EEGs and an eye specialist. The EEGs showed no seizure activity. In May, she had brain surgery by angiogram and the AVM was embolized, which means glue was injected into the AVM to replace the blood. During this surgery 50-75% of the AVM was filled along with 2 aneurysms that were found. She had 5 round of radiation in July/August. We had an overnight hospital EEG in October which showed NO seizure activity. Eye appts with the specialist showed that there was some vision loss, but it has slowly returned. On Thanksgiving, we had to rush her to the ER, where 2 more MRIs were completed that showed migraines. She continues to battle visual migraines and her hair is coming back in curly where it fell out because of the radiation.
We praise God that the AVM was found and it is curable in 2 to 3 years. We’ve seen God throughout this whole process from the doctors (Dr. Hage who did my husband’s surgery is specially trained in the catheter surgery and was able to perform her embolization and Dr. Keihna, her pediatric neurosurgeon is the top of her field and head in Charlotte) and nurses that took care of and continue to take care of our sweet girl.
We also praise God that the fact that the AVM had not bleed and that she was able to notice and say something about her vision that made us aware that something was going on. There was a 60% chance that if her AVM had bleed that she wouldn’t of made it. AVMs are very rare and are normally not found until they are bleeding or during an autopsy. The latest update as of July 2022, the AVM is dying. It will take a few more years to completely be shut down. We will monitor it and have another MRIA in July 2023…