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AVM Survivors Network

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


#1

Hi everyone, If you have read my previous posts I have already talked about my hair loss and shared some photos. I have had a look through the forums and seen I am not the first to experience extensive hairloss post embolisation. However I also see no one has shared photos of their hair progress.

I have found it difficult with no reference to look at and not knowing what to expect. Unlike chemotherapy hair loss, I lost more or less half of my hair in an odd shape rather than all of it. I want to share my photos in order of date for others to use as a referance who go through the same thing - you are not alone! I will continue to update this post with new progress photos!

I had a 7.5 hour embolisation procedure to treat my left occipital lobe AVM during which I suffered a stroke on 26/01/18. As they monitored the stroke they used alot of contast dye and xray scans causing the extreme hair loss.

9/02/18 - about two weeks following my embolisation I started noticing my hair falling in clumps

12/02/18 I decided to bite the bullet and go to the salon

19/02/18

01/03/18 - just over 7 weeks after my embolisation I finally stopped shedding hair and lost all that was going to fall

I decided to embrace my baldness and shave the rest of my hair off

15/03/18 - I realised it isnt so simple keeping a bald head style when you have a patch of thick hair with the rest bald… I wasn’t a fan of the triangle shape. Luckily I was offered a free wig by the little princess trust!

With my new wig and the wonderful stylist at Trendco, London who fitted it for me!

02/05/18 - finally 4 months post embo I finally started seeing some hairs sprouting!

09/05/18 - I finally grew enough confidence to post my first new photo on facebook since my embo. I wanted to show I finally feel good with and without a wig now and I’m not ashamed!

I was starting to feel good enough in myself to dress up again

24/05/18 this is my hair today, and although it isn’t perfectly even or thick - I am incredibly happy with my progress!

11/08/18 - A long overdue but very happy update. I now have a full head of hair. It has grown out two differant textures, my left “new hair” side is looking curly and the right “natural/original hair side” is straight as it is too short for the waves to come out. I honestly am not bothered about differant textures. I am more confident than I have been in a long time and I don’t think I will have the attitude of complaining about a “bad hair day” ever again!

For anyone else who has experienced hairloss please feel free to post on here and ofcourse ask me any questions :slight_smile:

Love to all,

Corrine


#2

I commend you for putting this out there as this forum is all about information and helping people understand what is yet to come and what they will have to deal with. sharing stories like yours will undoubtedly help many other people in their journey!


#3

You’re beautiful!
Mine was not as extensive at all but very unexpected. Not fair. It wasn’t right after. Washing my hair one day and …um … yeah, a bit disconcerting to say to the least.
Grown back, it’s funky. That part has a different texture and lies differently bit hey … it grew back!


#4

Corrine,

This is fabulous! I completely agree with Mike (as usual) and this is a great piece of reference. I suggest you move it to the AVM 101 category.

I’m really pleased your hair is making some progress and I’m also glad of a post I saw from you a few weeks ago that this experience is making you a stronger, more confident person. It’s a great thing.

Power to you!

Richard


#5

Thankyou everyone!

@Mike5 @DickD exactly what I was hoping this post to be, I want others to be able to use my experience and photos as a comfort and referance point not to feel alone. They are definently not the most flattering photos but worthwhile sharing if it could help :smile:

I have added this to AVM101, definently the best place to be found!

@Tempest definently very unexpected for me too - was not warned about this as a side effect! Currently my new hair is a very soft/baby hair like texture and slow growing compared to my other hair but we will see how it grows out in future updates :raised_hands:

I feel although I do miss my old hair and appearance sometimes, this hairloss and weight gain has taught me to focus on other aspects of me. I think before I got ill, I did kind of lean on my physical apearance a bit: being a slim, long haired, all around asthetically good looking girl. I have had a chance to have a new experience now I look differant, and been forced to work on my confidence and character flaws. By the time I am long haired and back to my original size I want to be more than just “back to the old me” - instead a greater developed person all round :smile: :muscle:


#6

You’re absolutely beautiful with or without hair☺


#7

Yes you are beautiful, and so brave. My hair loss wasn’t as bad. Stay strong

Sarah


#8

Thank you so much for sharing your photos. I had AVM an had several embolizations done in March and April. Just like you my hair started falling out. I noticed that there were more and more, 10 hairs at a time when I would run my fingers throught it. I mention this to my daughter. I went to the hair dresser to have my hair dyed every three weeks and he said. Wow your bald spot is getting bigger. I said what bald spot. He said that he noticed it April 27 the last time I was there having my hair dyed. But he never told me. He said after what you have been throught it happens. I see it all the time. I could not believe it. he called it ALOPECIA AREATA. Since this bald spot was on the back of my head, he took a photo to show me the hair loss.


#9


#10


This was May 16, 2018


#11


#12

This was May 18, 2018 at the doctors office, they measured, took photos, and gave the area a bunch of shots.


#13

After the hair dresser showed me the photos of the bald spot he suggested that I go to a dermatologist.
I call the neurosurgery team. They said it had nothing to do with the AVM and or the embolizations! So I did what the hair dresser said, go see a dermatologist.


#14

The dermatologist said it comes from stress. I believe that like you I had alot of contast dye and xray scans. I believe that the hair loss is directly related to the surgerys.
So I will be going back to the dermatologist for more shots once a month for 3 months and see if it stops the hair loss.


#15

Hi there @RDR,

Thankyou for sharing photos aswell! I just checked out what alopecia areata is and I don’t think this is the case either. Where you lost your hair - is it the same region of where your AVM is located? I was told to expect my hair to grow back with time and luckily it has done - although 3 months to see some hair growth did feel like forever!

I have not used any medications for hair-regrowth other than biotin suppliments. What are these shots you were given? Do they promote hair regrowth or prevent further hairloss? Is the first picture your scalp after the shots?

To be fair my neuroradiologist told me it is a stress response to the radiation exposure. They have delayed my follow up angiogram by 6 months to August 20th in order to give my scalp time to recover without further radiation exposure.


#16

I experienced the same hair loss after my third embolization. I was shocked because it was completed unexpected. But the good news is that the hair has now, one year after the last embolization, completely grown back. Thank you so much for sharing the pictures, it will be very helpful for others in our situation.


#17

The AVM was in the front. Hair loss so far is on the back of my head. The first posted photos are at the hair salon, the next photos are at the dermatologist and a photo of the med. that they injected, to prevent hair loss. I have not posted any photos since the shots. But I will after I go back for the next round of shots June 16th. They will measure the hair loss. I was also prescribed to use MOMETASONE to apply to the bald spot once a day.
None of the nuero guys ever mention hair loss.
here are the results/details from one of the 47 test…
CT ANGIOGRAM HEAD & NECK W WO CONTRAST - Details
CTA HEAD:
ANTERIOR CIRCULATION: THERE IS A RIGHT FRONTAL LOBE BRAIN
ARTERIOVENOUS MALFORMATION (BAVM). THE NIDUS MEASURES 1.5 X 1.5 X 1.4
CM. THERE IS ENLARGEMENT OF THE RIGHT A2 SEGMENT, WHICH COULD
INDICATE DOMINANT SUPPLY TO THE AVM. THERE ARE ENLARGED DRAINING
VEINS INTO THE SUPERIOR SAGITTAL SINUS AND VEIN OF GALEN. THERE ARE
MULTIPLE ASSOCIATED ANEURYSMS, THE LARGEST MEASURING 2 X 1.4 X 1.4
CM. NO LARGE VESSEL SIGNIFICANT STENOSIS OR OCCLUSION.
POSTERIOR CIRCULATION: NO SIGNIFICANT STENOSIS, OCCLUSION OR ANEURYSM.
ADDITIONAL FINDINGS: NONE.


#18

Did the Neuro guys tell you that you would loose your hair?
Do they want you to come back for more test? Mine want me to. But the Angio Seal they put in me takes 90 days to dissolve, and I have one in each side of my groin.


#19

I didn’t have hair loss with the angios, but boy I did with radiation treatments. About 2 weeks after each on I’d notice hair start coming out in clumps. Luckily my hair grows pretty fast and I good keep it covered up till it grew back.


#20

Hi Kate,

Thank you so much for your reply, so great to hear you have had full recovery of your hair! May I ask when you say this - has your hair grown back at the same thickness as the rest of your hair and also how long is it now roughly? When it first grew out was it soft/babyhair texture initially like mine is?

Thankyou, I really do hope this post helps others who face this in the future!

Corrine