Hi everyone, I am the new member (from hong kong) and also have AVM. I discoverd my first bleeding on 21 Jan. 09., my AVM is 3.5cm, and i did the embolization on 13 Mars 09.
At first my doctor said, 30-40% of my AVM can be solved in the first time.
But finally the embolization was going smoothly, 80% (even 100%) of my AVM was solved, but it took longer time than the others. (normal the whole Process took 4 hrs, but i took more than that)
After 10 days, when I washed my hairs as usual, oh my god, I lost so many hairs (I have long hairs), which is like ppl doing the chemotherapy, full on my hand, it was so horrible, I don’t know when it shops lossing hairs… then i email to my doctor, he said yes, hair loss is a phenomenon observed due to X-ray screening used during the procedure. Some people have more hair loss than others and the hair loss may be focal i.e. patchy. It would gradually recovered though it takes some time.
Did anyone have the same phenomenon as me??? will i get back my hairs later???
Mei,
I lost large patches of hair all over my head after my CyberKnife Treatment. It DOES eventually grow back but the process can be long and painful. I know the feeling when you shower and pull out a lot of hair. I first discovered I was losing mine as I was brushing through it one day. It is no fun but if you really think about it in the grand scheme of things it seems like such a small price to pay, yet probably one of the worst symptoms of everything! I loved my long hair and it was very hard for me to disguise all of my little bald patches…all of my friends and family were very understanding. Its good to know that the embolization is working for you (it was not in the cards for me) my advice would be to see if the hospital you went to has a hair care center or perhaps go to a cancer center and see their cosmotologist. I went to a cosmotoligist at Appleton Medical Center to see if my folicles were still open and if I’d be able to regrow hair. They can also offer you some advice as to what hair products to use to make it grow back faster! I am sorry you are losing your hair but it will hopefully grow back soon!! I hope I helped! Take care! You can message me with any more questions if you want!! : D Ashley
Hi Ashley,
Thank you so much for your sharing.
Hope you will have a beautiful life~ God bless us! 
Mei
Dear Jenny,
Thank you so much to sharing your exprience!
As my doctor replied… yes, hair loss is a phenomenon observed due to X-ray screening used during the procedure. Some people have more hair loss than others and the hair loss may be focal i.e. patchy. It would gradually recovered though it takes some time.
And recently i find out in the interternet: Some embolization procedures can be lengthy, and the x-rays can cause temporary hair loss. If you experience this hair loss, be assured that it will grow back. The typical places for this hair loss are on the back of the head or above the right ear. (i am exactly on the back side of my head, and u?)
http://www.ohsu.edu/health/health-topics/topic.cfm?id=13902&parent=12348
Hi Mei
I also had an embolization treatment about 5 weeks ago and 2 weeks later I experienced alot of itching on my head and my hair started falling out on the right side of my scalp exactly where my AVM is. it has been two weeks and my hair is completely bald on one side of my head it looks funny, but I would suggest seeking help from a dermotologist as Ashley stated and they can check your folicles. I have been given a steroids cream to use as they said i have a condition called alopeica Areata which is hair falling out due to stress. But I believe it is due to the X-ray machine and being under it for 5 hours.
Reading through the forums most people have had their hair grow back but it does take time. My advice would be dont stress about it, as it wont help. Be positive and hopefully it will all grow back soon i have read on the internet it takes between 3months to over a year.
Let me know how you get on and if you have any questions feel free to ask
Regards
Dipen
Hi Dipen, thanks so much for sharing your experience! I feel less stressful now, coz it falls out periodically, daily (less and less)… I think my hair is completely bald on one side like you (even more than u). Anyway, as you guys and my doctor said “don’t worry, it will grow back”, and I start to like wearing wigs! that’s incredible!
Hi Mei and warm greetings from Iran
My son had same problem after Embolization.
Don’t worry.It will grow back after 2-3 months.
Hi Alireza,
I have less worried now, and I have seen some hairs back already (6 weeks only), although it’s not so obvious! And now I am waiting for the check-up on 25 May. Hope to hear doctor said “congratulation, you are AVM free now” 
Mei
I too had hair loss from fractionated radiosurgery. My doctors told me to expect it but I was still not prepared. My hair was quite long so I had it cut short and it grew back. Only thing is now I have curly hair, before it was straight. Dont worry, it might be frightening now but it wIll come back. It just takes a little while. My husband tells me I’m lucky. He has a bald spot with no chance of it growing back, only getting worse.
Well, I haven’t had radiosurgery, i had embolization, my hair hasn’t falling out so far, it has been almost a month. I have had various other problems though, I had an ishemic stroke due to embolization, a blockage to the brain from the glue. I was told that it was a 5% chance that I could have a stroke and I did. I now can not see clearly, one of my eyes looks s mall and red most of the time, can’t taste some of my food, can’t hear out of my right ear and my whole right side is numb. Well, that’s the bad news, the good news is, I’m not paralyzed and the embo did shrink some of the avm which use to be 4cm. I say that last line to say that there is a silver lining in every cloud
i have to remind myself of the silver lining theory from time to time, I get pissed off sometimes when I think, the hospital gave me a stroke, if I didn’t already have enough challenges. Well on a positive note, I’ll stick with the silver lining theory.
Peace,
Ameenah
I too lost hair!! the hair loss followed the exact pathway of the x-rays. I was bald bald on the opposite side of my AVM…It eventually grew back…
well i guess ill join the crowd. at least after readin this i dont feel like a freak. lol my embolization was the17th of august 20011. its been a couple weeks but this morning a huge clump fell out of my hair in the shower. it freaked me out. im scheduled but have not started the proton therapy yet. this sux but i guess its time to shave my head for awhile
I really wish I had seen this a couple of months ago.
I had Gamma Knife in June for my AVM and a crani in July for aneurysms. I asked repeatedly if I would lose hair. I was assured there wouldn’t be a problem & that I’d only lose the small section they had to shave for the crani.
I even told them that if I was likely to lose my hair that I wanted to cut it ahead of time & donate it to Locks of Love.
Post crani, it sure seemed like my hair brush filled more quickly than usual & that I seemed to be pulling out a lot of loose strands when I was just sitting around.
About 6 weeks post crani, I did find a balding spot adjacent to the shaved area. I was pretty upset. I had prepared myself to lose my hair in April. I wasn’t prepared to find a baldish spot in mid-August. And I was mad. I have waist length hair. I feel like what I lost just went to waste.
After I slightly freaked out, I had several people tell me they lost a lot of hair after they’d had various surgeries–that the anesthesia will cause it to thin/fall out. ARGH!
I already had several scarves, and I bought several over the summer, so I just wind a scarf around my head to cover my bald spot & scar & off I go. (I sunburn easily & scalp burns are the worst!) Some people think it is just a fashion statement.
www.headcovers.com has some great scarves & caps. I have two from there. All the rest of mine are from WalMart or Department stores or other random places.