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AVM Survivors Network

Hair Loss From Cyber Knife Radiation


#1

Hello All,

It has been about 3 weeks since my cyber knife radiation. I had 3 doses. The other night I experienced some significant hair loss in the shower for the first time. It was quite a big chunk from underneath on the right side where the AVM was treated, about the size of a half dollar. I am noticing quite a lot of strands that are falling out more than usual on the right side as well throughout the day. I skipped washing my hair the next day and will again tonight, not sure if another chunk will come out or not.

Just wanted to ask if chunks of hair loss was a common thing with cyber knife? The radiologist told me I should only see some thinning but no chunks...in yet I am seeing chunks. Thank you!


#2

Hello Amcoffey
It does seem common
I did a search and there are a few threads on this
http://www.avmsurvivors.org/main/search/search?q=hair+loss+cyber

I did not have cyber knife but I had a massive unrelated avm stroke and lost a great deal of hair and then again with each angiogram. Anytime to body is stressed you can lose hair.

Mine has grown back and I know its unnerving to see a big chunk of hair come out.
I also got bad eczema on my head and use Paul Mitchell Tree Tea oil shampoo which helps

I wash my hair every other day but wet it the days I dont wash it

Angela


#3

Thank you for the search I will take a look! I appreciate your response.


#4

One thing that helped my hair grow back was turmeric but it is a blood thinner so you need to ask your neuro if its okay if you take it.
It also helps with memory. I take it a few times a week with permission from my neuro-
I had brain damage after my stroke which they thought would take me 3 years to recover.

My husband gave me coconut oil and turmeric and I started to heal even with the avm and went back to work pt 13 months later.
I dont work know due to the pain in my brain but do volunteer work from home and all the memory issues and brain damage issues are gone.


#5

I see! Yeah for now my neuro said no blood thinners. I even saw maybe biotin could help with re-growth but I will have to ask him just to be sure.

Glad to hear you're on the right track! You've made great progress from reading your profile.


#6

I had gamma knife this Feb also experiencing hair fall. It has gone down a bit but not such a significant difference:(


#7

I had LINAC and yes all 3 times I had Approximately 1&1/2 to 2 inch sections come out. The last one right on top of my head. It always comes back, but I really hate looking like a rooster. LOL...


#8

Yeah same the clumps have stopped but my hair is still thinning out =/


#9

Yup thats about the size of the sections coming out for me too, I have about 4 bald spots underneath my top layers right now


#10

I've heard that it is rare for hair loss to happen but when it does it is temporary.


#11

Just an update to this post:

Since I wrote this post more significant chunks have fallen out in the shower. I have about 4 bald spots on the right side of my head all underneath my layers so they can be covered relatively good. one bald spot is close to my ear and if I tuck my hair behind my ear you can see it. As of today 7/5/16 I don't see chunks coming out anymore in the shower, just some strands here and there as normal. I called the nurse and she said patches could happen and that it will grow back. Just sucks, I can't put my hair up or you'll see some of the bald spots. And if I go swimming you can see 3 of the four.


#12

Thanks for your input!


#13

I know it sucks and if you are like me and used to having thick hair its very strange does not quite feel like your own hair.
Its good it has stopped coming out in chunks and it will start to grow back
Mine fully came back and my hair is still thick as ever-
Even now when I get a migraine and the next day a lot more hair than normal comes out.
Angela


#14

Yes it does feel strange! At least the hair loss is temporary. How long did it take for your hair to grow back?

Alyssa


#15

Just to give you a laugh I was balled on the left side of my head after surgery. It took long time for my hair to grow back. Funny part after I woke up from surgery. Left side balled with 55 stitches, and right side of my head curly hair that looked like the 70s hair style. Don't no why they didn't shave it of included but It was a funny hair style to have.


#16

Wow seems like you've been through a lot! Thank you for the cheer up though!


#17

Alyssa
I think the 1st time was after my non avm related stroke which was a massive stroke to the thalamic area and blew out the vein lower left side that later became a DAVF- So I think it was about 2 months or 3 months for me of losing massive chunks of hair, plus they had shaved some of the top of my head before they knew what was wrong to do a biopsy - but thankful the pre scans showed the blood clots
So I think it took like a year. Plus I had my 1st angio 10 months after my stroke and then lost more hair.
My second angio was May 2015 and I think I lost hair for about a month and it I would say about a year. I hair below shoulder length hair and it looks like you do too so I think it will be about a year to have that full head of hair feeling.

I still only wash my hair every other day but wet it in the shower and I use the tea tree oil shampoo or shampoo without many of the bad stuff in it.

I also normally just let it air dry as well since I no longer can work or use a diffuser - I like Shea Moisture products you can find them on drugstore.com or even at CVS. They are sulfate free and gentle.

It will grow back I was worried it would grow back straight since I have wavy hair but it grew back the same. My hair person can tell every time I have an angiogram cause it will feel thinner but she says my hair is super healthy even though I color it myself with John Frieda foam colour about every 2 months - I just dont have the patience nor the funds to do it at the Salon. :)

Just be gentle with your hair and it will come back healthy. I think eating Jello creates healthy hair and nails since you cant take turmeric. Maybe try some weekly jello!

Angela


#18

Good to know hair does grow back, banking on that ! Trying to cover bald spots by parting hair on opposite side from what I used to …


#19

Yes it does grow back, just wondering how long it will take, a lot is missing haha. I have been doing the same thing with my part, trying to part it more so to cover the bald spots


#20

I think you’re able to notice the bald spots so much because your hair is dark. Once your hair grows in even just a little, it will be way less noticeable. In the meantime, shop around for hair extensions. They come in clip ons. Vary in diameter of 1 to 8 inches and in all lengths and colors. The bangs in my profile picture are fake! I had the top of my head shaved for drainage tubes after my bleed and wanted to hide my buzz cut haha. I didn’t wear them much though. I actually rocked the buzz cut as my badge of honor, we’ve been through a lot girl and are warriors, and in the end hair does grow back. I know what you mean though I had long flowing blonde hair last year and now it’s short and terribly thinned after gamma knife with a half mullet from being shaved. Hey, us Jersey girls gotta stick together, hang in there!
Jeannine