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AVM Survivors Network

Post embolisation hair loss - my hair recovery (pics and dates)


#21

Hmmm it is puzzling that your AVM is right frontal lobe and the hairloss is bottom left of your head. As your dermatologist said, possibly not due to the radiation but a result of stress of everything overall.

I am hoping the medication prevents any further hairloss and your hair grows back soon! But as you can see from my post, it won’t be the end of the world even if you did lose more, although it isn’t easy - you wouldn’t be alone :heart:

Let us know how you get on, will be thinking of you!

Corrine


#22

Melissa,

Thankyou for sharing your experience :slight_smile: Same here had no hairloss with the angio so it came as a big surprise! I am relieved that my new hairs are now growing fast too, just hoping the thickness will completely even out soon :crossed_fingers:

Corrine


#23

Hi Corrine,

The new hair has grown back much softer, almost like baby hair :-). It is now about 5cm in length. I had been told by the neurosurgeon that the hair loss was clearly caused by overradiation and it would “most likley” grow back. Thanks god it did. I hope that your post will help others to stay positiv in a similar situation. Kate


#24

Hi RDR,

I am going back for a follow up aniogram this month and it will hopefully show that the AVM is fully closed:-). I was not asked back for tests relating to the hair loss but maybe this was due to the distance between my home in Hong Kong and my neurosurgeon in hospital.


#25

Kate,

I was told the exact same thing that it was due to overradiation and that hopefully it will grow back but it is not a guarantee. I am so happy to hear about your progress, our new hair seems to be growing out the same texture too!

Excited for hair growth progress over time and I’ll definently keep this post updated - will be encouraging I hope for others to try to be patient and positive :smile:

Corrine


#26

Kate, RDR

I was also not asked to return for tests relating to the hair loss. I was told it was just a “wait and see” type thing. My neuro-radiologist has asked for hair growth updates and has delayed my follow up angiogram to allow time for scalp recovery but that is all.

Best wishes @Kate9 for your angiogram this month, I’ll be sending floods of positive energy and thoughts your way! Do let us know how you get on :raised_hands:

Corrine


#27

Hi Corrine,

I now wish I’d done the same as you! No one told me about hair loss and it came as quite a shock. I was quite upset. Mostly about not being told. But it does grow back.
Good luck with the rest of your journey.
A


#28

imageimage

Hi Corrine!

My story is quite similar to yours- my hair started falling out in clumps I believe exactly 3 weeks post Embolization surgery to the day. It came as a surprise to me as well as I was not prepared at all for this.
It was my first weekend that the rehab allowed me to stay with my family at my home and I woke up Saturday morning with a single straggly hair and I pulled on it and then another fell and then another and then several and then I knew something was wrong. I freaked out. I called the rehab and I contemplated going to the hospital. It was something out of a horror movie.
Long story short, when I got back to the rehab facility Sunday evening no one had answers for me. The next afternoon the rehab Doctor came in to have a chat with me and told me he believes I have this “condition”. He told me the name of it but also told me he wasn’t going to write it down because he didn’t want me googling it. I’m assuming it’s that scary. To this day I am unable to google this condition- I don’t even want to remember that word, so I don’t.
Now my specialist/surgeon- who is a world renowned doctor for AVM’s got wind of this (separate Doctor). My rehab Doctor and my specialist spoke on the phone and he actually gave him shit for falsely diagnosing me! So much so that the rehab Doctor came to visit me at the end of his shift to apologize for mis-diagnosing me and wanted to explain himself. I was shocked, upset and relieved at the same time. He told me that my hair was falling out because of the massive exposure to radiation. 2 days later I met with my specialist and he explained everything to me as well.

You know, I’m not ashamed to say that I am a type of person that really takes pride in keeping my appearances up. I’m really interested in the beauty and hair community and it’s something I’ve always loved and have been interested in. Having my hair fall out was probably the hardest thing I have gone through in my life. And people are so insensitive. They see hair as just a vanity thing - and I felt almost embarrassed to show my fear.
To this day sometimes when I get that little straggly hair I still get a little anxiety.
At my last check up with my surgeon I did tell him how upset I was back then with how they all handled the situation and how they should really come up with a way to better equipt people with hair loss.

It took down exactly 4.5 months for my hair to start growing back and I lost about 40-50% of my hair in total.
It has been just over a year and a half since the day it started to fall and my hair is healthy and growing back stronger than ever.
BTW - I take biotin daily and I will include pictures!


#29

I’m pretty sure Corrine got two answers from different doctors about her hair loss, too. Corrine, am I right?


#30

That is sometimes the hard part of this process;as I think sometimes the doctors are trying to protect us and give us hope and for the most part most of us just want straight answers and know what we’re going to deal with…


#31

Hey Kitty,

@DickD your right - Omg I wonder if its the same thing I was misdiagnosed with. I went into the hospital for an appointment with the neurosurgeons registrar a couple weeks after I lost my hair for a follow up appointment. I had already been told by my neuro-vascular nurse when I called her about it that it was due to overradiation. When the registrar saw my head she immediatly insisted it’s not due to radiation, that there is no way that is possible. She told me the only cause is that during the embolisation they must have cut off the blood supply to my scalp. She said my hair is most unlikely to return and in some cases the scalp eventually turns black. She talked with such confidence like she knew for sure shes 100% right and was totally blunt. I can’t tell you how I felt other than deep numbness in total shock. Thankgoodness as soon as I went downstairs to do an MRI scan, the neuro-radiologist who id met before rushed to me having just called the registrar to see how I’m doing and told me its completely wrong and my hairloss is due to overradiation and has good chances of growing back. I am so thankful the neuro-radiologist rushed to correct this or I think I’d would have reached big time breaking down point. I am annoyed to say the least though that the registrar who messed up never apologised or apeared to feel bad - she just confirmed incorrect diagnosis when telling me my MRI results the following day. It shocks me that she wasn’t phased about such a huge misdiagnosis.

Omg I agree people just don’t get how hard it is! There is such a pressure to be “brave” about it but its a differant story when you have to deal with people staring at you and treating you differantly. I don’t see it as superficial at all because to be honest I’m the same. I’ve always taken pride in my appearance too and I think I didn’t really appreciate how differant it is on the other side. Trying not to sound vain but I felt I went from being generally seen as good looking with people being really nice to a half-bald girl people don’t know how to respond to. I realised how differantly you get treated depending on your apearance. I hate how people shrug it off or say “atleast you can wear a wig”. Like to me wearing a wig feels like wearing a mask, I dont want to have to cover up and its uncomfortable and frankly very hot on the head.

I also take biotin daily! And thankful to say my hair is finally grown even enough that no one would guess my hair isn’t short by choice. Finally don’t have random people calling out “cool hair style” or “why shave half your hair?” - just feels hella embarassing and intrustive.

If you feel comfortable with it, I’d love to see photos of your hair now its grown out?

Thankyou so much for sharing your story and pics!

Corrine


#32

Hey Alex,

Ahhh I know right! Hopefully this post will help raise awareness of this potential side effect of embolisation and also help people feel less alone when it happens. Feel free to share any photos of when you had hair loss or of your regrown hair if you feel comfortable to do so.

Thankyou so much. Honestly I’m just relieved finally to have hair reasonably even enough not to draw attention from strangers! Onwards and upwards!

Corrine


#33

Sure - I just took these right now! I’m waiting for my hair to grow out a bit longer just to my clavicle and then I’ll cut it all off to a sleek lob! I’m kind of excited because I’m tired of wearing extensions all the time. My hair is super long and because of the way it fell, I have hair intact on my crown I was able to find a lady who custom made a halo extension for me with beautiful 100% real hair- she is a genius. If you don’t know what a halo extension is, it’s hair extensions on a fishing wire and its worn almost like a headband. Perfect for my situation!

Losing hair sucks and I must commend you for being brave enough to shave it off- I wasn’t. At the time when it was falling, I didn’t know how much was going to fall out so I was preparing myself to shave it off and just get a really good lace wig. It ended up stopping after a few months and I found the halo which has worked wonderfully for me.

Ps. Not that it matters but you have a lovely face and the shaved head really suits you :blush:!
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#34

It is good to see people willing to put their pictures out there because I’m sure it will help other people that are going through the same situation; this is such a great forum!


#35

Mike

I agree with both of your recent posts in here!

Richard


#36

My new section is crazy funny
Kinda kinkier (sp?).

Weird


#37

Hey Kitty,

Wow Your new hair has grown out beautifully! Yeah I was thinking when I looked at your hair loss patch that although obviously it sucks, it was kind of perfect for hiding with rest of hair + extentions. I am sure this will inspire others who lose their hair in a similar location :grin:

As I showed, unless you have total hair loss, keeping a shaved head just doesnt stay even until its regrown :frowning_face: there wasn’t really any way I could look “normal” without a wig, had to just wait it out until the hair regrew even. But it sure taught me patience and hopefully these photos will help others in the time leading up to hair regrowth to see the light at the end of the tunnel :sun_behind_large_cloud: :relieved:

Thankyou lots Kitty, also means alot coming from such a beautiful girl as yourself! Honestly it sounds crazy but this whole experience has boosted my confidence loads. Feeling attractive regardless of a buzz cut and embracing no longer hiding behind my hair :smile:

Thankyou so much for sharing your photos :heart:


#38

I’m super interested to see how my new hair looks once it is longer. My “original” hair is standing on end when it’s short and the “new” hair stays down instead of up so I’m noticing a differance in texture already!


#39

Mine was very curly when it started coming back.


#40

@Melissa_Joyce_Lott_C I’m really looking to see what texture it is when its long enough to be able to tell :slight_smile: