pilomatrixoma - anyone know what this is?

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My five year old daughter has been diagnosed with a pilomatrixoma on her face - essentially this looks like a large whitehead. She's had it for about 8 months and when it first appeared I thought it was a bite. Several visits to the GP and a referral to a dermatlogist later I now know it is a very rare type of facial cyst. Apparently the only way to remove it is with surgery but because of her age, this would have to be done under GA - and because it is not benign, any surgery is considered cosmentic, which I'm told cannot be done on the NHS.

I'm prepared to explore going private as I'm desperate to have this removed from my little girls face - I know that it isn't causing her any discomfort or threatening to her general health but I also know it's only a matter of time before she becomes self concious about it. I've already watched her clam up and want to go home, when other children have pointed it out in the playpark.

So, has anyone else heard of this and if so I would be really grateful to hear your experiences.

Many thanks....

so... would it go away by itself? or are they saying she has to live with it forever? will it grow?

i would be going back for second/third opinions if i were you, and pushing for removal

The dermatologist told us it might go away in time - but the notes she sent back to my GP suggest the only way it will go away is with surgery - which is consistent with anything I have been able to find out about it online. Am in process of booking private apt with another dermatologist for second opinion...

My DS1 had one of these and was referred for surgery on the NHS - because as the cyst grows it can cause infection and structural damage to the cheek/face. In the end we used our medical insurance to jump the queue to get the consultant to do it sooner on his private list, but we were in line for surgery at our local hospital on the NHS. Go back and insist

Thanks for msg singersgirl. Do you mind me asking when your son had his? I'm just wondering if the recent cutbacks have impacted on such ops. Also, was the surgery a success - did your son suffer from much scarring? I wasn't aware that as the cyst grows it can cause structural damage to the cheek - now I'm freaking out even more! Were you ever given any indication as to how your son developed this in the first place? Sorry for all the questions but would be really grateful for your help...

Son had his done in 2005. Surgery fine - he has a tiny indented scar on his cheek where the pilomatrixoma was, but it needs to be a plastic surgeon doing it, apparently. When I said structural damage I just meant that as it grows it can stretch the skin and I was told by the consultant that there was a real risk of infection as it dragged/pulled etc. Apparently these only develop in children and it's when a blocked pore (I think) calcifies rather than just clearing; I do remember his saying 'calcifies for reasons we don't quite understand'.

There has been recent cutbacks in cosmetic surgery and it is a nightmare for some people. If this were a portwine stain then they would act (I hope). Write to your MP and the PCC, back to the GP. It is unacceptable that a little girl should suffer when treatment is safe and available!!!

Thanks for answering my questions Singersgirl. We're seeing a private dermatalogist at the beginning of March and prepared to pay whatever it costs to get rid of - although as sneezecakesmum says perhaps I should put up more of a fight to have it done on the NHS!

Hello, ladies, I would like some feedback about your experience with pilomaticoma. My daughgter has it, and I am super scared to deal with the surgery. What I am more scare is the scar. How did your kids scar are now? Are they fading away?