Hair loss questions

Symptoms & Treatment
1

Hi everyone,

I am more than a month out of my embolization and craniotomy. I was relished from the hospital from the hospital on Feb 8, and two weeks after I was relished, I noticed some hair loss. I just assumed that it was hair that was matted into the braids they face me to keep my hair in place.

Unfortunately it got worse and when I washed my hair I started to feel bald spots. My neurosurgeon is confused because my embolization was short and he mentioned for longer embolization he has seen this, but it is usually more extensive, with more hair loss on the site of the embolization. My hair loss is predominantly in the back of my hair, my hair around the area of my AVM is growing in very well after surgery. He think there are two possibilities: I am very sensitive to the traditional from xrays or that the physical stress of the craniotomy has caused the hair on the other side of my head, away from my AVM to fall out.

I was wondering if anyone’s hair has fallen out after their craniotomy? I searched through the site and noticed it’s common for embolizations, could this be it?

What did you all do when patches of hair fell out? I’m pretty sensitive about this, I always loved my hair, and long hair is important in my culture.

Can you recommend how I can take care of the skin on my head as I way for my hair to grow back?

Thank you!

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2

I’d love to blame my craniotomy for my hair loss :rofl:, but alas it was heading that way prior to surgery. I often joke that some baldy’s have a smooth bowling ball head. I do too it’s just mine’s got the finger holes :stuck_out_tongue_winking_eye:

What did I do about it? I now wear a baseball cap. The cap hides it all.

Stress is well known for causing issues with hair, the more we stress the thinner the hair shaft becomes. Also the oils that nourish our hair are altered when we’re stressed and this can make our hair brittle. There are some hair oils you can purchase to help nourish the hair and reduce breakages and splitting.

It’s interesting that your dr mentioned xrays. My sister in law had an issue with radiation similar to you and it burnt her scalp causing a patch of hair loss, but it is not something that I’ve experienced myself.

Merl from the Modsupport Team.

3

Hi,

Well, I “only” undergone a embolization - a fairly long embolization procedure. I noticed when as soon as I came to & for weeks to follow that most of my facial hair came out(my eye brows came out in chunks) - I had no clue what it was from(no one mentioned it) - The rest of my head I keep shaved anyway.

But, from what I figured is that it was caused by the fluoroscopy - A little over a month later I had a follow up angiogram. I asked my neurosurgeon about it - he agreed, that it was sometimes experienced by some patients from the radiation

About two months later it grew back in

4

Hi @CarolineT

I don’t have any tips as such but I was told 2 possibilities as I also lost hair after surgery

Trauma from surgery. Bodies response from say anaesthetic etc and surgery

Or radiation from xrays

Mine took 2 or 3 months to stop falling out and it’s all normal again now

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5

My hair fell off in chunks on/off after my craniotomy and embolization. But alas this too shall pass :slight_smile: I started taking hair vitamins out of desperation (my whole house was covered by my hair lol) and those helped ALOT!! sugarbearhair gummies incase you wanted to know which ones. Anyways eventually the hairloss stopped and now my hair is 4 fingers shy from touching my butt because I was that traumatized of being bald for months hahaha!! So I haven’t cut it in 4 years hence the length plus covid quarantine cant go out and risk being safe just for a hair cut. But don’t worry dear it’ll stop and grow back. My neurosurgeon and radio interventionist had traumatized me saying not to be shocked if it didn’t grow back around my avm site but luckily they were wrong!! I even have wigs from how scared I was of my hair not growing back lol!! But I agree I never got a for certain reason if it was the radiation, stress, the glue in the embolization, or a combo of it all. I doubt it was the stress because recovery was way more stressful in my opinion and I haven’t lost hair in years LOL!! chin up, you won’t be bald or patchy for too long.

6

@CarolineT after my embolisms and angios I did loose a great deal of hair- I am allergic to the dye they use and I have to take steroids prior- I do feel quite ill post as well- _I did read that turmeric can help with hair growth and I did ask my neuros if it was okay to take since its also a herb that can cause bleeding so they since I still have my DAVF they told me I can only have it twice a week. So you need to check with your drs.
always check with yours before taking any supplement
Angela

7

Hi there!
I just had a thought. The stress of the procedure may have disrupted the endocrine/hormone cycle. This happened after my craniotomy many years ago. I did not lose hair at that time; it was a few months before I regained my normal cycle however. Years later, after an abdominal surgery, and an abrupt cessation of my estrogen replacement therapy (ERT was common for women at that time), some hair fell out all over my head. I bought a wig. The dermatologist told me it was from the drop in estrogen and that it would grow back in a few months. Thankfully, it did!

I know how important our hair is. I wish you a happy resolution to your current situation. :wink:

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8

I’ve been through hair loss from radiation twice, once from the endoscopy, and several decades before, from radiation treatments for lymphoma. It’s weirdly distressing, even if it seems like such a minor problem in the scope of things at the time.

If your hair loss is in a more-or-less defined patch, it’s likely from the radiation. The x-rays used for fluoroscopy during embolization add up, even if they turn it off as often as they can during the wait times during the procedure (which I think is what my doctor told me they did). Hair follicles that are active seem to be particularly sensitive.

I lost hair over most of the back of my head during a fairly long embolization procedure. The 10% of follicles that were in a resting instead of growth phase seemed to come through fine, so wasn’t completely bald. It would have been nice to just shave it all off, especially since the new hair growth was a very different texture, very curly on the ends, but I had a hard enough time convincing nurses that the red, patchy birthmark on my scalp wasn’t a rash, so I just pulled my hair back into a thin ponytail to cover it up best I could. After a couple of inches my hair started to straighten out and pretty quickly got back to my “normal” straight, course hair. Sigh.

When I had radiation treatments for lymphoma I also lost a strip of hair on the nape of my neck, up to the top of my ear or so. That took a couple of generations of hair growth to get back to normal - the first was super fine, like baby hair, and a much lighter color.

The hair loss in both my cases lasted for weeks, and didn’t start right away. I think the follicles that are active when the radiation hits basically stop producing hair protein, so there’s a weak spot or a break that may take a little while to grow out. Anyway, there were handfuls every time I brushed or washed my hair, and hair all over everything. The longer your hair, the more it seems to be!

Any illness can cause hair loss, and like other systemic assaults like chemo or hypothyroidism, that kind of hair loss tends to be fairly dispersed. If it’s in a more defined area, though, my bet would be it’s from the radiation.

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9

Hi everyone,

Thank you so much for sharing your experiences. I decided to cut my hair very short so I could keep track and note if I am still losing hair or if it is growing back. It definitely is growing at a different rate and thickness. I have attached a photo of my hair as of now.

Based on all of your experience, it seems like it could be caused be a lot of factors. I am meeting with my dr in 2 weeks so he can take a look at it and see if its necessary for me to meet with a dermatologist. Unfortunately my neurosurgeon is unsure of the cause, my embolization was shorter than mores of yours (I believe it was less than 5 hours) and based on his experience with hair loss associated with surgery stress, it seems different. He said it is fine if I take biotin, but I will double check with my neurologist to see if it will interfere with my seizure meds. Are there any foods, shampoos, exercises you can recommend? Obviously I will double check with my doctors.

For now, I’m just going to own it, like the lack of hair surrounding the scare associated with my stitches from the surgery and the tubes after.

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10

That looks very similar to the pattern after my embolization - asymmetrical but defined. The good news is that it grew in just as thick as before, with no thin or bald spots, and it grew back much more quickly than after my cancer treatments, and as strong as normal. The first inch or two were very curly though, so it took a while to match the rest of my head. With very short hair that might not be an issue for long at all.

As far as food choices, etc., I suspect that any healthy, varied diet will help your hair as well as the rest of your body. The classic thing to do to help your hair grow longer is to massage your scalp to help with blood flow. I have no idea if it works, but if it feels good, why not?

11

@corrine had a similar, defined area of hair loss after a marathon embolization procedure a few years ago She posted her hair story here:

I can tell you she looked amazing with no hair, looked amazing with her new short hair when it started to grow and still looks amazing today!

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12

When I was panicking about my hair loss, I looked through previous posts and was inspired by her!

I though I would post my issue though because mores of the posts I saw were related to hair loss from embolization treatment but not embolization and craniotomy.

13

Agreed. It’s good to share more than one story.

And I just worked out how to get your photo to show properly :slightly_smiling_face: so I’ve edited the post.

14

Hi Caroline!

Sorry for not joining the post sooner.

Thank you for sharing your photo, it’s great to share our stories so others have something to reference to who join.

As you could see from my previous post, I experienced pretty significant hair loss too. It is a huge shock especially not being warned. My doctors were shocked too - they didn’t expect that amount of hair loss even with the pro-longed embolisation.

Like you, I was really keen to find solutions to help speed up the process. Unfortunately in my experience, all I needed to do was wait it out.

It took about 7 months for my hair to grow out in even thickness so that it finally looked like an even buzz cut. I know right now that probably sounds like forever and it took months to show any real progress at all but you will find yourself celebrating even the smallest of changes.

I can’t guess how your hair will return, it could come back with a differant texture, thickness even a slightly differant hair colour. But I can say, that you’ll grow to love it in whichever way it grows.

I think we tend to hide behind our hair sometimes but losing it forces you to grow confidence in your natural beauty and it becomes empowering. It also gives insight on what it’s like to look a little differant, I learnt to not take offence at any remarks or looks, it’s curiosity or people projecting their own hang ups in regards to health. I liked the idea that other people might see me and see if I can go out without a wig and look happy in myself, then they can too if there ever comes a time that they deal with hair loss :muscle:

Really happy to read about your sucessful treatment and that you’ve been getting through the recovery process well and keeping positive :slight_smile:

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15

Hi corrine,

Thank you again for posting your experience. It definitely helped me understand what I was going through. Hair loss was so difficult, emotionally. While my husband is so supportive and wonderful, he definitely could not understand why I was more emotional about my hair loss than my surgery.

I have had some growth in my bald spot, however it’s only a couple. Unfortunately no hair is growing back on my scar. I am just assuming that might be permanent though.

I am meeting with my GP this month, although all my drs say my hair loss is associated with my embolization and surgery, they want to do some other tests to rule out anything else. I will let you all know.

In other news, it has been 2 months since I was released from the hospital!

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16

Hi Cttardibone, thank you for sharing your story. I had a Davf and had a craniotomy. I was released from the hospital after a month because I contracted COVID in the hospital. I am losing lots of hair. Was just wondering how your hair is doing.

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17

Hi Puff,

I am so sorry, I hope you are recovering from both your craniotomy and COVID. I still have a bald spot but some of the hair has grown back. I started taking Biotin and am trying to focus on massaging my scalp.

I would definitely recommend specking to your doctors. My neurosurgeon and neurologist had to narrow down the reason behind my hair loss and make sure that biotin didn’t interfere with my medicine. After that, my gp also wanted to make sure it wasn’t caused by other medical issues. My gp is now in the process of recommending a dermatologist.

If you would like, I am happy to share a photo of how my bald spot looks.

I hope this helps, please keep me updated on your recovery!

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18

Hi everyone,

Thought I would share how my hair growth looks like at 3 months

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Sorry for how bad these photos are! Taking a good photo of the back of your head is really hard.

In other news, I am doing well! I still have some days where I forget words, but it’s getting better! I am also getting my second COVID shot tomorrow so wish me luck!

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19

@Puff I am so sorry that you got COVID from the hospital I hope you are doing okay - I read people loose hair too from COVID. How are you feeling now? Is your DAVF gone now?
Angela

20

Looking good! Are you feeling better now that it is starting to come back? I can imagine that at the point it is going it is a further worry but I’m hoping that seeing some recovery is really encouraging.

Well done!

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