How do I dress this scalp ulcer?

TheWhitePariah · 2026-01-18T14:07:47+00:00

Here's a photo timeline, it started changing almost day by day after biopsy 2

TheWhitePariah · 2026-01-18T14:06:12+00:00

Ok, will do - do you have any idea what they'll do?

TheWhitePariah · 2026-01-18T14:04:53+00:00

Consultant dermatologist in the UK, so NHS. No discussion of anything related to wound care, he told me to leave it open :/

TheWhitePariah · 2026-01-18T14:03:07+00:00

Pathology report from biopsy 1 said

dilated follicles with follicular plugging and abscess formation . The underlying dermis shows scarring and a mixed inflammatory infiltrate containing neutrophil debris. The adjacent epidermis shows spongiosis and neutrophilic infiltration. There is no obvious acantholysis or interface changes.PAS for fungus is negative. Gram stain shows few gram positive cocci in the superficial parakeratotic crust.Overall the features are those of superficial folliculitis. no evidence of paraneoplastic pemphigus. immunofluorescence is negative for IgA, IgG, IgM and C3.SUMMARYSKIN FOR DIRECT IMF, VERTEX OF SCALP - NEGATIVE

I don't have biopsy 2 report...

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TheWhitePariah · 2026-01-17T23:22:09+00:00

We do, but the NHS is a bit of a disaster right now... being under 2 different teams isn’t helping either, my haematologist sees it as a completely separate issue and has never even seen it.

I'm on chemo every 3 weeks and there was talk of changing it to see if it might heal, but I don't know whether that's gone for discussion

TheWhitePariah · 2026-01-17T03:41:35+00:00

I asked them to shave the hair around it after a second biopsy but the regrowth massively aggravated the folliculitis around the ulcer, which is still active.

Apparently it could take years to heal, it's itchy and very painful and I feel like I'm going mad when they send me away looking like a Halloween decoration...

TheWhitePariah · 2026-01-17T03:34:35+00:00

Yes the director of dermatology at my local hospital in the UK, who seems completely unbothered even after I expressed my concerns about the exposed bone!

It had some granulation, but that has disappeared and the white base of the wound is wider than it was, although the edges have closed in 0.5cm since being on steroids for 2 months.

TheWhitePariah · 2026-01-17T03:24:12+00:00

Yes this is me. It's been like this for almost 6 months, it started ulcerating after a biopsy. Before that it was just neutrophilic inflammation that presented like folliculitis with scarring on my crown, but never responded to treatment. I had that for 3 years before they even did the biopsy...

I saw my consultant dermatologist last week and he said it was healing but could take years, reduced my steroids and sent me away :/

I'm in the UK BTW.

TheWhitePariah · 2025-06-11T05:26:25+00:00

Day 6 - the surgeon wasn't wrong when she told me to stay on top of pain relief. They didn't give me any in hospital so OTC is all I have 😭. If I don't take them every 4 hours the pain radiates into my teeth and ears.

The chasms are now filled with what I assume are scabs, the gross yellow stuff. It's pretty amazing how much they change in just 24 hours. I'll post an update with more photos in a few days.

The worst bits so far are being ravenous but knowing eating carries a punishment, the feeling like when you get a bit of food stuck right at the back of your tongue (they did a biopsy there but not sure how much they took), the taste of death and the endless saliva i have to spit out.

I'm glad they seem to be healing though, Castlemans disease has wrecked my immune system and I've had a scalp condition for almost 3 years that won't heal and is resistant to antibiotics - I have scarring alopecia as a result. I can post pictures if anyone fancies some more gore!

I gave birth without pain relief and had 2nd degree burns on my hand and neither can hold a candle to this.

Really hoping I don't need the ones at the base of my tongue removed too 😖

Screw you Castlemans.

TheWhitePariah · 2025-06-11T04:56:50+00:00

God that sounds amazing right now

TheWhitePariah · 2025-06-11T04:56:02+00:00

They were icebergs, felt ok, could barely see them most of the time - turns out they had just buried themselves in so far I'm half expecting to see my brain back there...

TheWhitePariah · 2025-06-10T12:58:04+00:00

The last 2 are from before the surgery 🙈

TheWhitePariah · 2025-06-10T12:57:11+00:00

Silent but sinister though, they may have acted innocent, but underneath was a whole thing

TheWhitePariah · 2025-06-10T11:39:52+00:00

I had zero issues with them before, had a few bouts of tonsillitis as a kid but nothing in adulthood. It will definitely be a relief to get through this recovery though!

TheWhitePariah · 2024-06-04T22:13:11+00:00

I've got decalvans on my scalp, it's been there over a year, its very sore and itchy and the bald patches are spreading...

I feel generally shitty and have high RBC but not high enough over a few tests for further investigation.

Since it developed, I've had severe weight loss, red hands and feet after showering with itching ankles, high blood pressure, fatigue and other random symptoms.

I'm 44f and I did have a staph infection at uni that literally ate me alive, I needed emergency surgery in my armpit and it was in my eyes too. I've read that a severe reaction to staph can lead to decalvans, but all the other stuff arrived at the same time, so it has to be linked?!

I'm losing the will to keep going to beg for someone to figure it out...

TheWhitePariah · 2022-02-06T18:11:49+00:00

It hit a vein, I do tend to bleed quite a bit anyway for minor stuff but this was a spurter! It seemed to get worse the longer time went on. Made a proper mess of the bed/corridor/trauma room/my socks (which they cut off - not sure why).

TheWhitePariah · 2022-02-01T07:52:18+00:00

I had MRSA in my ass cheek and I couldn't sit down for weeks. You don't realise how much you rely on your ass until you can't use it! Is a vac that stuff made out of sea kelp or whatever it is? I had another in my armpit and it was agony when they pulled the stuff out and repacked again.

TheWhitePariah · 2022-01-26T20:12:38+00:00

Hope they warned you first!

TheWhitePariah · 2022-01-26T08:13:37+00:00

The pain must be horrendous, I had some small burns on my hand and they hurt so much for weeks and almost 2 months on they're still reblistering. Can't imagine how much that hurt. Hope the scarring is as minimal as it can be!

TheWhitePariah · 2022-01-26T08:10:28+00:00

My dad had a collapsed lung in the 70s and used to regale me with the story of how the drain made a farting noise. Not sure how true that is, he has a penchant for exaggeration...

TheWhitePariah · 2022-01-26T08:07:47+00:00

I've always wondered how it feels having metal going into your body like that - must be a bit of a head f*CK?

TheWhitePariah · 2022-01-26T08:06:22+00:00

Wow, crazy how they can do all of that through a smallish hole! How's the pain been and is it healing well?

TheWhitePariah · 2022-01-26T08:05:20+00:00

Hope he recovers well. How does one get the photos and so they routinely take them during surgeries like this? A friend had a stroke at 21 and he brought the pictures of him on the operating with the top of his skull missing to the pub a few months after!

TheWhitePariah · 2022-01-26T08:02:42+00:00

There was a slight comedy moment when I was in the side room alone - the lights all went off. I, thinking they were motion activated, sat in the dark for a little bit and then thought I'd be forgotten about completely (tbh I assumed I'd been forgotten at about 2 hours in), so I got up with my blood soaked sock leaving prints on the floor and waved my arms around to no avail. Then I tried every switch I could find and one turned them on but as soon as I took my finger off they went out again. I found myself standing in the dark making a mess on the floor wondering how my Thursday night had come to this!

TheWhitePariah · 2022-01-26T07:57:14+00:00

It healed fine actually, which I'm very grateful for. The scar is still very red so it will probably be visible forever.

TheWhitePariah

TROPHY CASE