Morning!
Update on my daughter’s experience so far. Hoping this may help anyone in a similar situation or just offer information. Q had a small bleed at the end of May 2025 that was preceeded by a severe headache and a major toothache both in the right side of her head for two days prior. Her symptoms started while she was doing an ab workout. The night she was evaluated she started vomiting with the headache and tooth pain and then had a seizure (tonic clonic that lasted about a min). It was determined that her grade 1 avm was too deep and surgery was not recommended. This forum was helpful in reading stories about SRS and we made the decision to go this route. She had her radiation done at the end of August 2025. The night of the surgery was horrible and every symptom she had with her bleed (except a seizure) came back that night and was worse. That was a little worrisome since we were told to expect a “mild" headache. Since her bleed she is on generic Keppra XR 1000 mg at night. After that night things got better. She’s had a few headaches with the weird tooth pain since then but only when she’s over tired or stressed and they go away with one dose of Tylenol. She tires very easily and we aren’t sure if that is from her seizure meds or her healing from the radiation. We have an MRI scheduled in April (6 months post radiation) to see if any progress is being made. Her neurologist prefers to keep her on her seizure meds until April until we know more. If things progress quickly towards obliteration we will start weaning her off the seizure meds as her EEG was normal. Because the risk for bleed continues her neurologist wanted to keep her on them for now bc it could prevent a seizure if she had another bleed. We are working on getting her driving again since she is past the 6 month mark seizure free.
We will continue to update.