Losing My Hair!

I have had hair loss after my dural AV embolization. I also have a very itchy and scaly scalp. I am about 6 months post embolization. I am hoping the itching and scaling go away.

I can’t comment much on the hair on my head - since I never have any

But, I can on my facial hair - as soon I got out of my embolization procedure, my facial hairy - specially my eye brows started falling out. I remember the first time I went to scratch my eye or something & a whole chunk of eye brow came out - 3 months later, most of it is back

I talked to my neurosurgeon about this - it’s from the high doses of radiation blasting the head for the duration it does & the times it does - I’ve had maybe 5 CT scans & my embolization was 4 hours long - that’s a bit of radiation

As far what helps it - I don’t know. Just time, and I learned not to even touch it - since it’d just fall out more for a solid month after

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Mimi,

Hair loss is common enough with embolisation, primarily I think because of spending a long time under x-ray.

One of our moderators, Corrine, had a marathon embolisation session a few years ago and was alarmed by her hair loss. Here is her post and you’ll see she looked even more gorgeous when it grew back!

Some of the other ladies have shared their experience here, too.

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Hi Mimi. My profile pic tells you that I also had hair loss. Mine followed a 6 hour embolization during which the doctor used fluoroscopy to steer a catheter up through my femoral artery and into my head. Two weeks later my hair started falling out. But it all came back and I am now good as new. I don’t remember how long I went with the Buddhist Monk look, but it wasn’t more than a few months.

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I also lost a decent amount of my hair about 2 weeks post embolisation and the dr told me it was from shock of surgery (being under anesthetic)… But I agree now with the others here… id say it’s the radiation… makes more sense!

Mine started to stop dropping out after about 3 months post embolisation

Hi there Mimi,

As @DickD mentioned, I had severe hair loss however this happened only a couple weeks post-embolisation, similar to @mike_az_21 and @John_Hoarty. My hair fell out due to the intensive radiation dose and it was falling out in clumps. My hair only fell from the left hand side since my AVM is on that side, the right side was untouched. It took about 6 months for my hair to return to full thickness.

My “new” hair grew back curly ( my hair is naturally wavy), apparently it is pretty common for hair to grow back in a differant texture after radiation.

Since in your case it has been 6 months post embolisation, I don’t think your hair loss is happening for the same reason as me. I suspect it might be stress induced after such a big surgery but I think it would be good to check with your neuro team and maybe be referred to a dermatologist too.

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Hi Mimi:

I also lost a lot of hair before and after Gamma Knife Radiation. When it started to grow back, it grew in areas where I had no hair loss. Could not get the crown portion to grow for anything. Hair was such a part of who I was before the AVM. To combat how bad I thought I looked, I started wearing wigs and I fell in love with them! Now I have a wig for any and all occasions and wigs and hair-pieces to compliment my many (AVM-related) moods. I have short ones, curly ones, straight ones, blonde ones, black ones. The AVM took a lot from me but I refused to let it beat me in a hair-battle. I won this round!

Sharon D…

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