Were you put on Keppra by any chance??? It made my hair fall out so bad I made my doctor switch me to something else. Now on vimpat and my hair stopped falling out. It’s a rare but possible side effect that my neuro didn’t believe me until she looked into it.
Hi Kim,
No I was not on Kepra thankfully (I hear the side effects can be awful). I’m glad getting off the Kepra stopped the hair loss! For me it was over-radiation that caused the hair loss.
Corrine
I had DAVM on my left side. I experienced vision loss as both optic nerves were swollen from extra pressure. I also had 6 spinal taps to remove all of the fluid the DAVM produced in my brain. And I was living with a loud throbbing heartbeat sound in my left ear from the pulsing blood flow .
I had 4 embos all consecutively then a craniotomy to remove the mass since blood flow kept finding other arteries and veins to go to amd wreak havoc.
Also numbness on my left side of face and my tounge and gums! So weird.
I lost all hair on the back of my head close to my neck and a large area of hair on the right side of my head - which is opposite of where the craniotomy amd embos were done.
This all happened in 2010 and to this day I still have a patch of thinned hair on the right side of my head, it did grow back very sparse.
Needless to say the DAVM is gone I have my vision back and I have some missing hair 
I guess it could’ve been a lot worse, right? I could be blind or dead.
I guess I am looking for anything that could happen that hasn’t already popped up? Can this glue cause other issues? I’ve had enough.
Linda H
Hi Linda!
I am sorry to hear about the effect all the treatment has had on your hair. I was told by my neuro-radiologist that over-radiation can cause the hair that has fallen out to grow back alot thinner. On the plus side I am very happy to hear that your vision returned and you are AVM free now! as you said could be much worse off.
I do totally get that although hair loss can seem like a super vain or superficial thing to be upset about in the grand scheme of things - it really isn’t that simple. I found the hair loss to be one of the toughest things to come to terms with (despite at the same time dealing with adapting to both sight loss and cognitive changes!).
It is ofcourse not the same but it sounds like a halo hair extension and hair styling could help cover it up? Also have you tried the fibre hair spray stuff which could make your hair apear thicker?
Since it has been 8 years now I believe you shouldn’t have any more problems from the embos. Other than slight increased cancer risk from the radiation exposure (as with any procedure using radiation) there is nothing else I could think of. Troubles with embos usually happen soon afterwards due to glue migrating, the glue in your head is well hardened and in place!
Since you are now AVM free and its been such a long time since treatment, I wouldn’t worry unless something to worry about happens (which I would think incredibly unlikely).
Best wishes
Corrine
1 Like
You are so beautiful! I just can’t.
1 Like
I know this is an old topic but for some reason it was in my feed. Thank you SO much for sharing, and the pictures! I went through that and was shocked at how few medical people understood why.
When my hair started falling out, nurse after nurse in the rehab hospital would suggest conditioners etc.
I knew exactly what had happened, though, because I’d gone through it before a few decades earlier when I had massive radiation treatments for cancer. Part of the field then included the back of my head from the ears down, with a stripe where I had a block over my spine to protect it. So I ended up with a sort of half-mohawk.
When my hair started falling out after the embolization it was unexpectedly emotional for me - I think a lot of that had to do with my previous experience, even though the hair loss had not been unexpected or all that traumatic at the time. Just very visible and very annoying.
This time around, I knew that there was no guarantee of the hair growing back, because I haven’t had to shave my armpits since 1986 lol. Back then the hair on my head had grown back, but it was super fine and curly at first like baby hair, very weak too, and it took a couple of generations of growth for it to return to normal.
This time around I hadn’t lost all the hair, just 90% in an irregular patch covering most of the back half of my head. Unfortunately I have a birth mark that looks like a rash over that area, otherwise I would have just gone with a super short cut and hats I think. Instead I just pulled my hair in a loose ponytail which did a decent job of covering it up. When it grew out, the first few inches were very curly, but then it reverted to my normal straight hair. But for awhile I had a the makings of a very cool hairstyle if it hadn’t been for those 10% of normal hairs sticking though.
Anyway those pictures looks pretty much exactly like what I experienced, but I had enough left on the front and sides to put it in a loose ponytail and cover it up Trump-style until it grew out.
Thanks again for sharing.
2 Likes
Thank you for sharing the pics & journey… God bless!
1 Like
Sorry for such a late reply @elisabet_k,
Amazing to hear from someone who had similar. Haha the “Trump Stylr” description made me laugh. Sorry you went through all of this, but greatful for you sharing your story. The shock of it was nuts, the medic team gave no warning that hairloss could be a side effect! Lack of information is awful. Especially in your case, having lost your hair before.
Yeah, I wish it had all fallen out, having it completly half bold attracted very mixed comments (had I done this on purpose? No can’t you see the lack of stubble? Or do you think I waxed half my hair off? 
).
My hair is still very, very curly on the LHS (hair loss side), but equal thickness. Despite it all growing out at the same length, due to the difference in texture, the curly half looks shorter. Also… People never tell you about the “mullet” stage!
I think I’m getting close to cutting it for the first time since June 18. Hopefully a fancy hair dresser can get it looking more even and stim down the longer strip of hair at the bottom. Right now it is just long enough to put in a pony tail and use Bobby pins to hold back the hair in the front, so I need more growth.
I will post a photo of how my hair looks to date today when I go for a break at work lol.
So happy this post managed to resonate with other people’s experiences and was some what helpful.
1 Like
Thankyou Adrian!! Update photos coming soon 
1 Like
Hi Corinne, I know your posts were from some time ago, but they are helping me, truly! I was told today by my neuroradiologist that hair loss is likely from my upcoming 4 hour embolization (then surgery)… he said the radiation destroys the hair follicles but it grows back. Your story and photos 1) show you are truly a bad-ass inside, and what a beauty! 2) show that it does pass…thanks so much for sharing
1 Like
@LauraK @elisabet_k @Kitty @Alex_D and all, thank you so much for this thread - it at least gave me some information to go on, rather than unspecified dread. My question for anyone still on this thread who wasn’t brave enough to shave it: how long did the hair loss go before it stopped falling out (not how long before it grew back). Mine started today, 15 days post embolization. I have an appointment at the salon in 2 weeks in the hopes of covering up the bald spot with a creative haircut (I do at least have long and thick hair, hopefully that gives us something to work with). But I’m not sure if the hair will be done falling out at the 4 weeks post embolization point?
And @Kim91 I experienced the same with Keepra. As well as severe depression and hopelessness - thankfully my neuro agreed that she had only ordered it as a precaution and took me off anti seizure meds. So far so good on that front
Hope all is going well for you! My hair was coming out by the handful for at least a couple of weeks, and pretty heavily for a few weeks after that. Definitely more than a month, but the great majority was early on. Hair follicles don’t grow very evenly with each other, which is why a very neat haircut will grow out shaggy if you let it go too long. So, unfortunately, you may be dealing with more hair loss for a while, but it probably won’t be from a larger area than you see now.
One caveat on my timeline - I was also on a thyroid hormone rollercoaster at the time. My thyroid was completely removed a few months before my stroke, and it takes a while to find the right levels for the replacement. Hospitals aren’t very good places to work out the proper dosage of a medicine that requires absolute consistency in what in in your stomach at the time. Sometimes I’d get it early, sometimes with breakfast, and usually with an antacid that apparently interfered with absorption. Anyway the classic symptom of low thyroid is hair loss.
You’re gorgeous and so strong:face_holding_back_tears: thank you for sharing your history 
I understand you so well