Mine started very small, but got big and now it's a huge problem involving 4 surgeons and neurologists and oncologists and is just generally a nightmare. Mine ended up damaging my hearing and eroding my skull. Granted, this took 30+ years, but I wish doctors didn't brush me off 30 years ago. I'd suggest getting it looked at asap.

I have one on the side of my ear and in my ear canal. It eroded my skull too (I think). It’s really soft on that side of my head. Is that how yours is?

I have two of them in my head, but I don't know if they will cause me trouble or not. Whenever I go to the doctor, they say there is no problem, but I always suffer from headaches ?! "I've become distrustful of these doctors."

Headaches are not necessarily indicative of anything. They are far too common.

Yeah lots of people with nf have bumps everywhere. Even on your head, there is a thick skull between the surface and the brain. It's probably nothing to worry about. Also, most people have very lumpy , bumpy heads. Smooth heads are axmyth. Lol

I have loads of hard ones on my scalp. Makes brushing my hair a pain and sometimes laying down. But otherwise it's fine.

I have one too. Mines at the back of my head on the left side. It doesn't hurt unless I scratch it hard.

I only have one I know of. It’s been there for I think twenty years. Doesn’t hurt. Less than 3-4mm

I have them too. They don’t bother me

I have had these ever since I can remember. Mine are hard and hurt if I knock them. I had one removed but a similar tumour just grew back 🙄