My name is Andrew. I'm a young male living with a giant congenital melanocytic nevus that starts at my left eyebrow and extends upwards several inches into the left side of my scalp. I understand that this forum is for vascular nevi, but it's the only active nevus support forum I can find and I've got nowhere left to turn.
I have high hopes that someone else here with a scalp nevi can share their knowledge and experiences with me during a very painful and stressful time in my life.
Earlier this year I noticed that my hairline had begun to recede and thin out on the left side of my forehead where my hair grows out from my scalp nevus. Over the course of a just few months, random, small areas of my scalp nevus started shedding hair, resulting in uneven and thin patches of hair over the front left portion of my scalp.
In addition to the patchy thinning of the hair on my scalp nevus, my birthmark has also rapidly changed its thickness and shape and the way it feels. Wherever I have these patches of thin hair on my nevus, the nevus has also become swollen or inflated like there's some fluid or fat trapped below. I now have several raised lumps, bumps and ridges on my scalp nevus that feel soft and spongy to the touch, occasionally feeling sore or itchy. Some of these lumps are close together and form uncomfortable creases and folds within the nevus.
Of course, this has caused major distress for me. In the past few years, I became comfortable and slowly confident after learning to conceal my forehead nevus with my hair. My hair is black, so the nevus on my scalp was naturally hidden. But now that the hair directly above my forehead nevus is thinning out, and my scalp is becoming lumpy and uncomfortable, my ability to cover up is falling apart.
A saw a dermatologist recently who thought that this was just the 'natural thickening of the nevus' which could not be stopped or treated... But I feel like this is not typical. I suspect an infection or, at worst, cancer, judging by how quickly and randomly these changes took place.
Please, anyone else with a giant scalp nevus, let me know if what's happening to me is normal or a bad sign; if it will get better or worse; if I can fight it. I feel so helpless visiting expensive doctors and dermatologists who can't give me any sort of diagnosis or peace of mind. I would do anything just to know what's happening to my body.
I have attached a picture of my forehead and scalp nevus along with my hair loss. If anyone can give me some guidance, I will appreciate it sincerely and deeply. Thank you so much for your time and support.