Hi Everyone,
I am glad to have found this forum, even though it’s not the best of circumstances. I know this forum is really for acoustical neuromas, but I think my daughter is experiencing some symptoms of that with her FN. I did read some of the posts here for FN. We found out in early April that my 14 y/o dd has a facial neuroma, diagnosed through a contrasting MRI and other testing. It’s measuring about 1.8 cm. She is the youngest person they have seen with this type of tumor. We were able to secure the two best doctors in this area for the surgery, but because of their busy schedules it’s not until the end of May. The surgeon graded her severity at 1.6 out of 5 for facial paralysis. She can’t produce tears anymore, her smile is lopsided and her eyebrow doesn’t go up all the way. We also think her eye might not be closing all the way sometimes, since the eye dr found dry spots on her cornea a couple of months ago. We have been putting gel in her eye at night. They can’t tell 100% the location of the tumor until they get in there, and there is a possibility of a nerve graft. I just hope that being young is on her side and her nerves bounce back if they are able to salvage them.
She is doing OK with the diagnosis, but waiting for surgery is really hard. She has some symptoms that keep getting worse, especially in the past week. I was hoping some of you might be able to help. The surgeon’s PA is good with prescribing meds but not necessarily helping us troubleshoot.
We are just trying to keep things as normal as possible until after the surgery, but she’s feeling so sick she can’t go to school. We think the tumor is pressing on the acoustical nerve next to the tumor, causing dizziness and nausea (she had a hearing test and there is no hearing loss). It comes and goes at least 12X a day, if not more. Children’s Dramamine helps for a very short time, but we’re trying to find something longer lasting. The adult Dramamine is not helping much either. She tried ginger pills and they made her feel more sick. The dr prescribed a nausea patch and that made her so dizzy she could barely walk. We are now trying Phernergan and hopefully that will help.
Any suggestions from tried and true experiences? Will the dizziness and nausea go away after surgery?
If anyone else has had issues with their eyes...is eye gel/ointment at night enough or should she also put something in her eye during the day, even if it feels OK? I plan to make an appointment with a children's eye specialist to ask more eye questions, but thought I'd also ask here for others with the same experiences.
Thank you for any insights you can share!