Avm and hair loss?

Is it normal to loose our hair? And how much is normal anyway? If my hair keeps this up its all going to be gone. I loose hundreds of strands a day even when I don’t touch my hair it just falls out at my desk at work. When I brush it of a morning I get 20 or more strands in the bathroom just falling out everywhere. Is this normal? How do I stop it? I do not want to go bald. Please help!!!

Hi Zoe,
I don't know if the hair loss is related to the AVM or not, I have not experienced hair loss with mine and I even had the Cyberknife radiation. About 10 years ago I started experiencing hair loss like you are describing and found that it was hormone related, 6 month of hormone therapy and I haven't had a problem since. Discuss the hair loss with your PCP or GYN there is a simple blood test to check your hormone levels... Good luck.

I lost all my hair 20 years prior to a ruptured AVM

Hi-I’m unsure if hair loss is a direct effect of an AVM - maybe indirectly, like stress/change.

Also, maybe hormones or genetics???

There is also the possibility that the AVM is near the scalp and stealing the blood supply from the hair follicles, which then shut down. My son started losing eyebrow hair as his eyebrow AVM progressed; after the AVM was removed, some of the hairs grew back.

Dancermom yes my avm is near the scalp I don’t know if it is due to the avm or not but all my symptoms are changing and worsening lately. And its Scaring me to be honest with the rate of the changes. I have always been able to cope with my avm and still work and be a mum but now I feel like I’m failing to do anything and I’m no longer coping.

Wow… I did wonder why I lost my hair at the age of 18 years old… It did feel completely weird… These AVM are such little nasties. B.

I read this and thought I’d share:


I too had the gamma knife back in February of this year and am still experiencing the hair loss. I had the area of the gamma all fall out, now it's growing back in and I look like a I have a corsage on the back of my head, but I am still losing hair at a high rate of speed. I had my neurosurgeon, neurologist, even the nurses looking up why I am still losing my hair - maybe a medication side effect, etc., nobody seems to know why I am. I am thinking maybe we have just received such a high-dose of radiation that it is going to continue to kill hair follicles? I don't know. I don't think they know enough about our condition to tell us to be honest. I have had such a horrible experience with mine, I am just making my own diagnosis these days and they seem to make more sense than my own doctors. And I'm supposed to be being treated by the best here in Pittsburgh. Go figure.

Hi Zoe,
Iv Just Been diagnosed With A AVM + 2 Anneurysms.My Neurosurgeon Said I Have Had The AVM From Birth.My Hair Also Has Been Falling Out,Quite Badley,Its So Bad Im Going To Have It Cut Very Short. Which Up Sets Me Because I Like My Hair Longish.I Will Ask My Surgeon If AVMs Are A Cause Of Hair Loss.I Hope Your Hair Stop's Falling Out,Has I Do Mine.Take Care.

Merry Christmas To You.
Love Crystal

Thanks everyone for your information. I’m at a new neurologist today getting another opinion going to try and get some answers.

Zoe, were you able to find anything more?

I lose hundreds of strands a day, I actually counted, but mine I am being told is post embolizations and craniotomy. Four months ago and it hasn’t slowed up yet. Thank goodness I had extremely long and thick hair but now I’m getting nervous cause there’s not too much left. It is growing back though where they shaved for the surgery. I take 5000 mg a day of Biotin to help. Not sure if its doing anything. Good luck to you.

I've always had thick hair--until fall 2011. I had my first Gamma Knife radiation for my AVM in June 2011 & a crani for 2 aneurysms in July 2011. I was told repeatedly that the only hair I'd lose was the the section they had to shave for the crani. In Sept 2011, my hair started falling out & I ended up w/ 2 large bald spots. I decided to go ahead & cut my hair so I could donate it before any more fell out (I cut off a 17" ponytail for Locks of Love). The hair loss slowed down,but didn't go away. No major hair loss after GK #2 in Dec 2011, but it did start falling out again after GK #3 in June 2012.

The bald spots are filling back in, but it does still seem to be falling out more than usual (compared to before treatments).

Some of the drugs I’ve been on (decadron for brain swelling and keppra for seizures) made my hair fall out big time. It’s also turning a lot whiter, especially around the area where it all fell out 2 weeks after gamma knife. Could be hormonal too. Definitely something to discuss with your neuro team as well as your primary care doc who would be better at figuring out if its hormone changes.

Loosing a 100 strands of hair per day is quite normal but if you are loosing handfuls of hair then you seriously need some help. Start using natural haircare products and biotin to help grow your hair. You can also use hair extensions to hide your thinning hair till your natural hair grows out.

Well if you had any CT scans with contrast, that’d explain it. I had about ten of those in a row and lost a ton of hair. I bought a shampoo/conditioner product called “Nioxin” which helped it grow back. You can get it for a reasonable price at TJ Maxx or another discounter…I’ve also heard prenatal vitamins help.