Vulberable after hair loss

General Blog
1

Its been an interesting three weeks but I am happy to say that I am on the other side, almost fully recovered and nervously awaiting my next embolization with possible craniotomy on July 29th. As I wait I am experiencing a feeling of full loss of control. Its interesting how something as superficial and really insignificant as hair can make you feel, once gone. For me, it broke my heart.
I cried daily, just depressed, looking at the large patches of missing hair on my head. I was not happy with my appearance and because of that I was not happy with myself. I made the decision last Monday to shave my entire head, because I was holding on to a few patches. As I passed the clippers through my head over and over again, I sobbed, each ball of hair was met with a wealth of tears. Although doctors prepared me, they never prepared me for how much hair I would loose, or how vulnerable I would feel after loosing it. What makes matters worse for us AVMers is that people are unknowingly insensitive. My mother and sister bothered me daily about cutting my hair and bother me now because I have decided to wear a wig as oppose to proudly walking outside with my alienesk head that is growing hair now in patches everywhere.

It is truly a struggle. So, I just wanted to bring some awareness to the entire hairloss issue. If you are expected to have an embolization for a cerebral AVM you will most likely loose your hair, more importantly, when the doctor says you will loose your hair, believe him! Understand that it will be a lot of hair...I am anxiously waiting for my hair to grow back. In the meantime, my alter ego has become GI Jane when I'm in the house, and Jackie O when I leave...thanks to a nice wig! :-)

Although hard, I have to believe this is all a part of the process, that when this is all over and I'm completely recovered I will be a different person from all of this. A stronger, more self assured, confident person! :)

Hugs and kisses to all my survivors!

~Mica

2

Awe, your hair is not the important thing in your body. It is your heart and I already see what a very good person you are. Wanna look at my head? LOL I had a huge scare on the left side and really I do not care. If people hate what I look like well so be it. :)

3

So it wasn’t until this morning that I noticed the HUGE typo in my title…lol. gotta love quadronopsia! Lol. *Vulnerable

4

:slight_smile: Thanks Rodney! I’m learning that my hair isn’t that important. Every day I gain a tiny bit more confidence…thank you for your kind words. That helps make the ordeal easier to handle as well. Lol :wink:

5

My long hair has always been a huge part of my identity. I usually wear it about waist length, but I've had it down to my knees, shoulder length, and chin length.

I've had 4 Gamma Knife radiation treatments. Initially, I was told that I wouldn't lose any hair. I lost quite a bit after the 1st & 3rd treatments. I also had a crani for aneurysms a month after the 1st GK, so I ended up with HORRIBLE looking hair.

Prior to treatment, I had hair down to my hips. Then, I had this big shaved section on the right side that started growing out. I had 1.5 inch long hair that was sticking straight out. I was braiding my hair and wearing scarves and caps to cover the incision (and to prevent sunburn). People who didn't know I'd had surgery just thought it was a fashion statement.

Then, a huge patch, also on the right side started coming out. I couldn't use my hair sticks, hair pins or barrettes at that point, so I went & got a side part bob. Four years later, my hair is almost back to normal. It is still thin in a few spots and lengths are still not even all over. Most of it is half-way between my shoulders and my hips. The non-even section is hidden in the rest of it.