So I’ve been diagnosed...

Got biopsy results today. Plexiform neurofibroma.

My younger daughter is symptomatic.

Looking into confirmation and follow ups now and seeking advice

Not lid threatening. But it sucks

I’m sorry to hear this. Chronic illness sucks. It sounds like earlier treatment is better, which I hope leads to a good outcome for your daughter.
Please come back and tell us more. I’d like to hear how you are doing.

I googled it. I had never heard of it. I’m sorry you and your daughter are afflicted with this.
Are you looking at surgery?
Good luck.
Keep us posted.

Frankly … I’m 45 and have never had an issue.
We’re it not for a painful growth and a very good doctor I still wouldn’t know.
Way more concerned about what it might mean for my daughter

You are definitely right that that sucks. Wikipedia didn’t offer much current information — talking about the standard treatment in 2004. I hope there have been solid advances since then, or on the near horizon.

Wishing your family good luck and a positive state of mind.

That is one of those “wait and see” deals.

Mr VOW had a troublesome bump on the back of his neck. I thought it was a cyst. The doctor thought it was a lipoma. Path report came back as neurofibroma! He apparently got the type with one growth, probably won’t get any more.

My poor sister-in-law was having major, chronic pain issues. After MRIs and biopsies, she was told it was neurofibromatosis. Her growths, unfortunately, are a lot of little ones along the nerves.

Thank God for the internet, where you can research to understand just what in Hell this is, and you can also connect with groups of people facing the same thing, so you are not alone.

People here at the Dope are loving, kind, and supportive! And silly, too, because laughter still is good medicine!

Sorry to hear this; best wishes!