Update on Monica’s HH Journey
We would like to provide an update of Monica’s story since first sharing her story in December 2022. Monica was slowly weaned off her medication, seizure free and doing very well.
About 3 weeks after she was completely off medications, I went into her room to wake her, which caused her to startle and bringing on a very short seizure, lasting 2 – 3 seconds. What a shock! Monica was in tears because, in her mind, she was finished with seizures. We were wondering, what could this mean? I dug out her meds and called her neurologist to report what happened. We started her back on a low dose of medication and decided to give it time to see what happens. A number of months went by and Monica continued to have very short seizures at night once or twice a week. These were not the gelastic seizures but the complex partial seizures.
Finally in August 2023, we decided to have an MRI done to see what it could tell us. The results came back showing that a very small sliver of the hamartoma was still remaining from her first surgery. We sent the images to our neurosurgeon at University of Chicago and when he reviewed them, he said we’d have undergo a second surgery to ablate the remaining hamartoma.
It was very hard for Monica to think of going through surgery again but the longer we discussed it the more determined she was to go through with it again. It was both her goal and ours to be rid of the source of her seizures. And so her second surgery date was set for December 7, 2023. We made the 6-hour drive to Chicago to where the same neurosurgeon performed the procedure, laser ablation, which targeted the hamartoma.
We were so happy that all went well with the surgery and the doctor said the scan they did afterwards showed no remaining hamartoma.
After 24 hours in recovery, we were discharged and were so thankful to go home to the rest of our family. Monica was out of school until after Christmas break, at which point, she was feeling strong enough to resume her normal schedule.
She had several short seizures post-surgery but went away after 6 weeks, which is what we were told was to be expected.
Monica is enjoying being seizure free again and is anticipating weaning off her meds 6 months post-surgery. It was a difficult thing to have to go through a second surgery but we, once again, felt the prayers of so many friends and family! God carried us through each step of the way and we trust Him to guide us safely through the future with its unknowns.
– Monica’s mother, Lisa Miller
Your Story Matters – Sharing your HH story with Us
The process of sharing this often difficult journey can be healing for both you and others in our community. If you’re interested, please complete this form and we’ll start the process.
