Hello, my name is Lucas and I’m from Brazil. Last year I had a seizure and, through a tomography, found a cerebral AVM in my left parietal lobe. It had, fortunately, not bled and I went through an embolization which corrected a lot of the blood flow in the region. Last month I went through LINAC radiosurgery to continue treatment.
I haven’t felt many side effects other than some nausea and headaches, but a large portion of the hair in the back of my head has fallen, some hair in the sides as well. I’ve buzzed off my hair as short as possible, and don’t necessarily mind it since I enjoy the way I look with short hair, but the actually bald portions of my scalp have felt pretty hugely demoralizing. I read a few threads here on the theme and so far I feel like the best course is just to accept I’ll be half-bald for some time haha, but I’d be glad to read any experiences of people who went through the same and how they dealt with it.
Hope everyone has a wonderful 2026 and keep advancing in their respective journeys, thank you very much.
Hi Lucas. I had Gamma knife and didn’t experience hair loss although it would be hard to know for sure for me! I see you have searched threads and see others have experienced same and over time I believe most, if not all, have had their hair regrow.
I assume you’ve seen @corrine’s hair loss journey: there are a few good examples. I agree with you that accepting it is probably best. It will most likely resolve in a similar way to her experience.
I managed to get through an embolization without any impact on my hairline. I do know that Corinne had something of a marathon embolization session, so it could be to do with the degree of x-ray exposure or it could be a stress-related thing. Best thing is to accept it as a badge. It also allows people to see that you’ve not been well and be able to talk about it. Often, when there are no external signs of what we’ve been dealing with, people around us assume that we are more well than we are and yet it takes quite some time to get better.
Good luck with it: it is very helpful to have a male viewpoint on this as well as the understandable distress that some of the ladies go through with losing hair.
I’m glad you didn’t experience hair loss! My doctors had told me there was a possibility my hair wouldn’t fall so it was a little sad when so much of it actually did but I’ll tough it out! Thanks for sharing your experience
I hadn’t considered the patches could be a way to start a conversation, thanks for pointing that out. My doctors told me to always wear a cap outside to avoid direct sunlight to the region, but I’ll try to leave them out whenever I’m indoors. Thank you!
I wore a wristband before and after my operation, partly (beforehand) because I wanted to do something to help myself and partly I found it was a conversation starter. I had two silicone bands made – a dark blue one which I used on days when I didn’t particularly want a conversation, and a red one on days when I was keen to talk about what I was going through. I also had one, possibly a pair, made for after my op so that it had an updated diagnosis/situation on it so that if anyone found me unwell, they might read the wristband and get me to hospital quicker (and reference my notes quicker). As I say, it was one of my steps that I felt I could take to look after myself – a bit of control – and a source of conversation.
Personally, I found talking about it to be very helpful but I do know I’m very extrovert. I had a conversation with some colleagues recently where we talked about extroversion v introversion and I reminded them that I am definitely extrovert because if I’m ever in stress, they always know about it and they agreed!
What we know in this forum is that with a hidden illness, people around us assume that all is well, even if we are struggling inside, so having a big patch that makes it much more obvious that something is or has been amiss can be a benefit, if people are brave enough to ask you about it. My own recommendation is BE EXTROVERT when you need a bit of help. It may not come naturally but most people don’t know how to start a conversation about these things, so use what you’ve got to have that conversation. Allow yourself to be vulnerable when you are vulnerable: you’ll be surprised how many men can talk to you about similar things but nobody dares to start the conversation.
Since my AVM, I’ve had a fight with my prostate, gone through some painful difficulties, operations and ignominy with that, again been a bit open about it with my friends and discovered a good percentage of them are on the same medication as me but nobody talks about it until someone catalyses the conversation!
Hello! I went through this myself, and these changes were very hard for me. I couldn’t bring myself to shave my head, and I couldn’t wear a wig either, so I wore caps. I just waited. Every month I saw progress. This is one of those cases where time really does heal. It seems that no procedures or vitamins can give the effect you’re hoping for. You just need to be patient. I wish you a speedy recovery and happiness in the New Year!
I’ll do my best to be patient, Nana thanks for sharing! I actually used one of my illustrations for my own cap design and had it custom made, I love it quite a lot haha
I have experienced this hairloss on 3 occasions now!
First with the mammoth embolisation back in Jan 2018 that @DickD is refering to. I had another 3 embolisations in 2024 with initially only a little hairloss but the one in October 2024 was another long one leading to extreme hairloss so I shaved the remaining hair off again. It was starting to grow back but had another embolisaion in Feb 2025 which lead to a chunk falling out again so I took to my scalp shaver again. Now almost a year on I have a full head of hair, mixed textures, the new hairs are super curly in contrast to my naturally wavy hair. It’s a bit of a mullet at the mo but honestly just happy to have hair. I’ve added a selfie of my current look.
It grew back similar to how people with chemo first grow back their hair. Initially very thin and then slowly thicker and curly. Essentially because the radiation from the x-ray used during embolisation caused it to fall out rather than being stress related. Below is a photo of how it looked when it was growing back. I only had a patch in the front and right that hadn’t fallen out so using a skull shaver helped even things out for me and then just wore beanies to keep warm mostly.
Unfortunately I don’t have advice on making regrowth faster.. it’s just a matter of time.
I am currently considering a craniotomy next as after 5 attempts there isn’t more they can do via embo route and may brave the shave one more time depending on how it looks post op!
I’m glad that other than the hairloss you’re doing relatively OK with symptoms, I hope they continue to improve and wishing you all the best for the new year @Lucas
I assume that your radio surgery is similar to the radiation surgery that I had 5 years ago. As a result of the treatment I have a small patch of hair that is missing and has never grown back. It just gives my hair a little more character. Now that the AVM is gone, maybe it will grow back.
So yeah, pretty similar to your situation but with a different shape. I had already seen your thread and I’m glad your hair regrew healthy and strong, it gives me hope mine will as well. Wishing you luck whatever the next step in your treatment might be.
Hi Lucas, I’m the caregiver of someone who went through this. He had a couple of angiograms, and embolization procedure, and a craniotomy in a short period of time. In three weeks after his craniotomy, he lost a big portion of hair at the back of his head. He was alarmed as no doctors suggested this might be an outcome. I came here and found that others had gone through similar and shared that information with my family member and it gave him great comfort knowing others had similar side effects and their hair grew back overtime. He wanted to take a proactive approach so he met with a dermatologist that prescribed minoxidil for three months. I’m not sure if it was the medication or just the passage of time. But six months out his hair is fully regrown in that section although the texture is a little wavier. He has worn hats in the meantime as the scars from where the craniotomy incision has not grown back as thoroughly..
Neither of my radiation treatments caused nearly as significant hair loss as the two days of embolization I had done to stop an aneurysm inside my AVM from bleeding.
I did lose it to the skin, no peach fuzz even, on about a third of my head on the left side. I also lost a significant amount in the back of my head where my ponytail was up. They said it would be fine to leave it in the hair tie but I guess it really wasn’t. No warning and bad information as far as hair was concerned. I had to cut it from my hips to my shoulders extremely short again wjen the left side grew in to about a quarter inch.
Rest assured it grew back normal but did take extra time as it was lost down to the follicle.
I did have my brows and lashes break off after radiation just from washing my face or touching them.
Also, everyone else needs to heed the warning: do not dye your hair before, during or after for at least the next 6 months as it will cause it to happen all over again. Any ammonia or peroxide from said dyes will cause baldness. This goes for embolization and radiation.
I had mine dyed dark, with no bleaching agents, before high dose radiosurgery to save what was left of my hair, but developer was not used.
Thanks for all the support! Compared to a few months ago it’s come this far, hoping it will continue to thicken as time passes. My brother is getting married next month and I’m happy I might feel confident enough not to wear a cap in the wedding photos haha
Will update again in a few months with how it looks. Hope everyone is doing well!
