Hi, my name is Katie, I've been kind of shy of sharing my problem but I've seen how supportive this site is.
I had my AVM removed in 2012 when I was 17, it was located betweeen my scalp and my skull (not a brain AVM). Everything went okay until I noticed that the hair that hadn't been impacted by the surgery was growing back but the rest wasn't. I understood that the skin graft on the back of my head would need work later but I wasn't prepared for the rest.
My surgeon told me that my hair follicles had actually gone into shock of some sorts. The way your hair grows, it's a cycle. It grows and then it "sleeps", which is why you don't have hair down to your ankles or have to cut it constantly. Mine went to "sleep" and never grew again. Since then, every 6 months I go in for day surgery to have them move my scalp so that I can have my hair cover my head again.
I wondered if anyone else has had this happen to them. It's very distressing for me. I'm almost twenty one and I have to wear wigs. I've had about 5 day surgeries and I will need more to finally have all of my hair back.
Lastly, as a result of my initial surgery, I can't feel the left side of my head, (where the AVM was located). I can feel pressure, but not sensation. It's very strange and I was wondering if anyone else has experienced this. If so, does it ever go away or lessen of some sort.
Thank you.
Hi girl, I certainly hope that people will respond to you and assist you. My son has a huge U shaped scar where the hair does not grow. I know this is of no concern to him now but I know it will be later...also don't know if other's have the same issues and how they overcame them?
Katie,
Thanks for being able to share something that's difficult to talk about!
I had something similar happen to me although it's not my entire scalp - I had an embolization that was supposed to be no big deal because the blood vessel the doctor wanted to block off was right near the surface, he wasn't going to have to go really deep into the brain (I have an AVM in the right frontoparietal lobe). The embolization went well, took about 90 minutes, and when I woke up I had horrible pain in my scalp. It felt like someone had been pulling my hair really hard. The doctor didn't know why that happened and his guess was that because the blood vessel was one that ran right next to a nerve, the nerve was inflamed. A couple days later I was well enough to go home, but 2 days after getting home the place on my scalp that had been hurting started looking like it had been scraped or cut. It turned into an open scrape and as the scrape healed, the scalp peeled away, but it came away in really deep pieces, about half an inch deep. When the scalp peeled away, the hair came with it and by the time it was done, I had a big ol' patch of bare scalp about 2 inches by 2 inches.
So not attractive.
I could wear my hair in a way that covered it, but I also have a big dent in my scalp where the bare patch is - the doctor told me that I was missing some part of the scalp that lies between the skull and the outermost layer. Since that's gone, I probably will not ever get hair back there. Aside from missing some of my hair, I'm most annoyed that I specifically asked if I was going to have to deal with hair loss as a result of the embolization (since I already have a nice big scar running down the center of my head where I have no hair from a previous craniotomy) and he said no, I wouldn't have any hair loss at all. After the embolization when the scalp wound appeared and my scalp started peeling off, the doctors clearly didn't know what was going on. One told me it was from the radiation. The other told me, no, it wasn't from the radiation, it was because the nerve had been irritated. Both said it was unlikely I would ever get hair back there.
I'm lucky that so far I can cover both scars without a problem, but I have learned that doctors don't know what the side effects of these procedures will be and I'm much less trusting when they say things like "This procedure is no big deal."
I also think not having hair is a very different thing for a female than for a male.
It's good to hear that you will eventually get all your hair back, though!
Hi Katie, I know this is a bit different, but the topic has been on my mind too. My daughter had proton beam therapy in 2012 for her AVM when she was 11. She did lose hair in patches and that grew back. But since the radiation, she has been getting grey hairs, a lot, which are noticeable, since she is Asian.
I have googled it a bit and noticed radiation can cause this to happen.
I have an AVM on my L ear and scalp and had AVM surgery with a skin graft. They removed the top half of my ear but the AVM recurred right away. I have no sensation on part of my scalp. I think so many nerves were cut that happens. It's unsettling. The hair never grew back on my scalp but since it's around my ear as long as I cover it, it's not that noticeable. So I understand.
Hi Katie,
I had a very similar AVM removed 18 months ago. My AVM was quite large and located on my forehead and went back into my scalp area. Prior to the AVM being embolized and removed I had a tissue expander placed in my scalp. Over the course of 4 months it was pumped up so there would be enough skin to cover where the AVM was. The surgery was a success and the tissue expander skin now covers most of the top of my head. I do not have hair where the tissue expander skin meets my normal skin, and I doubt I ever will. My surgeon also doubts hair will grow there due to the shock. The best I can do is style my hair in a way that covers the ‘strips’. I too have very little sensation in the tissue expander skin - when I touch my head it feels “far away”. I do feel as though sensation is slowly coming to the area but it has been a very slow process. I wish you well, I know how painful surgery on the scalp is and it isn’t easy.
I have a right sided AVM and left sided seizures. My left side is practically paralyzed and has the same feelings as you if any feeling at all. If it helps my left side barley grows hair or its all patchy. Soo I guess I sort of have the same hair problem. I say keep up as long as you can and maybe take vitamins that encourage hair growth and i'm sure theres a diet and vitamin enriched shampoo for hair that could help. Give it a google and sometimes pinterest helps too.