This is my first post here since all of your wonderful posts have given us the information and support I and my daughter have needed through this journey. She had her second gamma knife treatment a couple of weeks ago and her hair is starting to fall out. She did experience some hair loss after the first gamma knife, and being a teenager who prided herself on her hair, it was devastating. Considering all that could be with an AVM, it seems like it should be trivial, but it just one more huge loss in a long list of losses. It seems that the hair is coming out a bit more/faster than last time and she is concerned that it will be a bigger and more noticeable patch than before. We know that it will (very likely) regrow over (a long) time, but has anyone used or heard of any supplements, treatments, etc. that may speed hair regrowth? Or ideas for covering the hair loss so it is not so apparent? She just needs some hope. Thank you for any ideas you can offer!
Hey @AlisonO it’s great to hear from you!
One of my favourite humans is @corrine who had a big embolization procedure several years ago and she had a bunch of hair loss, which was associated with being on the x-ray table for a long time.
She documented her hair “journey” here: Post embolisation hair loss - my hair recovery (pics and dates)
and she gained the offer of a very smart wig from the Little Princess Trust.
Since this is a UK trust, I assume it would not cater for people in California but maybe find out if there is any similar organisation in California or the US. Hair is a big deal for anyone, never mind being a teenager, and when it comes out in chunks it’s a proper downer.
I also enjoyed reading about @Brandi3’s son Luke’s badass tee-shirt today. There are definitely ways we can support our kids through this trauma that includes looking after coolness.
Very best wishes,
Richard
Thank you!
Dear @AlisonO
You are absolutely not wrong: hair loss as part of AVM treatment is definitely not trivial and I would agree is pretty devastating. I suffered hair loss, skull injury and scalp scarring as part of a mistake that my (thankfully, ex) neurosurgeon made, apologised for and then immediately followed up with a declaration that he had done nothing wrong (of course…I must have done this all myself whilst anaesthetised!)
This affected me so badly (and still does) that I made myself a project to learn more and help myself because I was dismissed and humiliated by all other hospital clinicians. One Plastic Surgeon boomed out “How is the BALD spot?!!!..” I didn’t go back to see him again.
I do strongly believe that in recovery from AVM treatment, you need to have some peace with the altered way in which you may feel you look. This is absolutely not to belittle the many other hurdles, challenges and losses that are experienced at the same time.
I taught myself aromatherapy with essential oils to heal my damaged scalp first of all. I still feel revulsion at touching my scalp but this helped me get over the worst. Things then began slowly to get better when I called Burns and Facial injuries charities to beg for help and guidance. In the UK, we have the Katie Piper Foundation who were very kind (this is what you need!) and gave me contacts for a private Trichologist (not a dermatologist) and also a private ex NHS Burns Consultant who now works for a Hair Trauma/Loss therapy clinic.
The Trichologist helped me regain some hair regrowth which gave me hope. She explained about the whole hair growth process and I learnt a more positive narrative to my hair damage: the body will divert key nutrients away from hair growth to where the most crucial repair is necessary at the time. So your body is working ultra hard for you without you realising it and trying to heal everything critical for life to continue first. Elevated stress hormones in the body unfortunately compromises this further…(hello to the vicious circle!)
This was where my Homeopath has been very helpful in helping me to rebuild a circadian rhythm (mine has been destroyed from surgeries and it has been normal to crash into bed at 4am - how is your daughter sleeping?) I also read books on Ayurvedic Principles of Medicine.
I think I have learnt that something so apparently minor as hair growing is actually a massive deal: all our body’s processes need to be in synchronisation. I am still learning about how to improve this and I work hard to eat as healthily as possible and as organically as I can afford (I personally haven’t focussed on specific supplements but I seem to have a craving for avocados and coconut after my brain surgeries!)
If possible, I would really encourage your daughter to allow her head to be uncovered outside, just for a short amount of time to start with? I would like her to know that she is still beautiful 
!! Also, another good tip I learnt is that a soft silicone scalp massager could be very helpful during shampooing and well, at any time that you feel stress building up.
Tons and tons of thoughts,
Talloak
Thank you for the support and so many things to look into. As a young college student, it is hard for her to focus on taking care of herself, but it makes so much sense that in order for the body to focus on hair growth, the body’s essentials need to be covered first. Thank you for all of this.
Even with just my embolization, I got some hair loss after the procedure. I noticed chunks of hair coming out of my eye brows & facial hair.
Best thing someone can use is good multivitamin. I use Nature Made Prenatal with Folic Acid - any adult can take prenatal vitamins.