Learn about NF
Facts & Statistics
Diagnosis of NF1
&
Olivia's Story
The week after the surgery she had a nasty sore throat- not strep, but a red, inflamed, painful throat all the same. And then a week after that is when she broke her teeth dancing in the shower. So not a great month, but she is feeling much better. As for whether or not the surgery is successful, that still remains to be seen. She has a post-op appointment this week, but it's mostly to check on her throat's healing. They won't retest her speaking or scope her throat for another 3 months, so she gets a nice long break from speech appointments & daily practice.
Other areas of concerns-
Olivia was horrified to find a fox skin- her favorite animals! |
We don't know the status of Olivia's plexiform neurofibroma in her left neck/ear area. It was growing at about a 16% growth rate as of last year. She had an MRI in December 2014, but the woman responsible for forwarding the scans to the National Cancer Institute had moved on to a new job, so it wasn't sent and we didn't realize it wasn't sent until about a month ago. So, hopefully, now its been sent off and we'll hear back on that soonish. Note to self: call this week to find out. Olivia is scheduled for her next MRI this week. In addition to the plexiform in her neck & optic pathway gliomas, they are also checking on her vocal chords. In the pre-surgery exams, the ENT also noticed her vocal chords and throat were more sluggish on the right side, which may mean there is something growing on those nerves as well.
Hiking near home |