This post is for my family, friends, anyone that has had a craniectomy and their family and friends.  Something was said to me yesterday that made me realize that I have not been more than abundantly clear about something the way that I thought I have been more than abundantly clear.

I was speaking with someone about how sometimes it hurts when someone touches me in the wrong spot on the back of my neck because of the brain surgery.  She said, “but the surgical area would be healed by now.”

Let me be clear.  The brain surgery that I had is called a Decompressive Craniectomy.  ‘Ectomy’ means removal.  A part of my skull was cut into and REMOVED in order to allow my brain to swell after the stroke.  In some cases when a craniectomy is performed, this piece of bone is put back.  In my case, it was not.  The area of my skull that was cut out was not replaced by the piece of bone that was removed or by anything artificial.  I literally have A.HOLE.IN.MY.SKULL and will have A.HOLE.IN.MY.SKULL until the day I die.  So, it hurts sometimes when pressure is placed there.

Here is a pictorial description of my surgery, fifth picture down, under Decompressive Craniectomy.

Here is what the back of my head looked like when I became conscious again and woke up after surgery…..Without the hair, my head was shaved.

Sorry if these pictures disturb you but deal with it, I certainly have had to.

Categories: Brain stuff, Stroke stuff

Tags: , , ,

20 replies

  1. Well, it doesn’t take a rocket scientist (or a brain surgeon) to know you shouldn’t be putting pressure there.

    • Ha! Oh God. Yep, exactly. It just takes a quarter of an ounce of common sense. And you would think that after being told a thousand times not to touch me there that it would be respected. Unbelievably, it was not respected.

  2. We have matching scars…unfortunately. Getting my haircut is torture! Especially the hair washing in the sink. (I skip that part.) I don’t like anyone touching my head.

    You’re not alone in the dealing category. Keep on, Amy.

    • People are morons. Sigh. I HATE leaning my head back in the sink to get my hair washed in a salon. It used to make me so dizzy and hurt and I would just refuse. Now, I can tolerate it.

      • I should ask because no one can relate. Have you experienced head (skull) pain/soreness? I have this every morning. It’s from the pressure from being in bed all night. It isn’t unbearable; I just wondered if I am the only one. Thanks, Amy!

        • On occasion yes, I have that but not every morning like you do. How long will it last after you get out of bed?

          • It gets better by mid-morning. I usually take a small amount of Tylenol. Otherwise I’ll start to get a headache. (And it’s better not to go there unnecessarily.) I’ve asked the doctor about it and he wasn’t concerned. I figured it was the gift that kept on giving. 🙂

  3. you are amazing!! thanks for your blog.

    Date: Wed, 6 May 2015 20:46:15 +0000 To:

    • Thanks John! And you’re welcome. I vent on here, it makes me feel better. And I know there a lot of other people dealing with the same crap that I am so it’s a bonus that I get to help people because of all the shit I had to learn to live with.

  4. I had the same operation but they had to go further to remove half of my cerebellum. The skull was never replaced. No pain but always have a tightness feeling in the head and neck. My husband didn’t take pics though so yours was interesting.

  5. Ugh…that sounds terrible. I just had a regular crainiotomy, where they cut it out and put it back. Mine still aches at times, but nothing like urs I’m sure. Mine feels kinda weird cuz u can feel the plates and screws…mostly the screws stick out a bit…my husband likes to joke that I have a screw lose..haha not funny :0

    Side note…I saw grumpy cat the book at Target and had to buy it. I gave it to my grandma for her 89th bday…best 12 bucks spent in a long time!!!

  6. I would be so scared of falling and having a stick poke in there if that was me….why can they not put something like kevlar patch…bullet proof but sorta flexible? I don’t mean to worry you, but I hate people touching my head (always have) I even hate wearing hats, I have not had surgery (head)…so I would be 100xs more bitchy than you if anyone came near my head. Since my third stroke I have had numbness on my left side of my face and the top of my whole head the opposite of pain. I am glad I don’t have pain, but pain means alive and numb means dead to me.

    • I guess I should have been bitchier. I was pretty bitchy but I was mostly dealing with a person who is a complete and utter moron and buffoon when it comes to other peoples’ feelings and things other people have to say.

  7. I’m sorry you had to be abundantly clearer on something that I agree wholeheartedly with you IS abundantly clear…
    It goes along with the “invisible illnesses” that many of us deal with as well.
    So tired of hearing, “You look like you’re well now.”.
    “See, I told you you’d be fine!”.
    “I thought BY NOW you’d be fine, you LOOK fine to me…” (said with a sidelong glance and subtle tone of disdain).

    Hopefully those who NEED to “get it” will have “gotten it”.
    We can always wish…and even though we shouldn’t have to, can continue to make certain issues abundantly clear…

    • I will continue to be clear. I have someone in my life now that gets it so I really only care about a few other people. Everyone else can go to hell.

  8. Hi, this is great information and thanks for sharing. My husband (51 y/o), had emergency craniectomy In early November due To stroke in his cerebellum. This happened two days after having elective heart surgery to repair a thoracic aneurysm. Yes, 2 days later. Thank God he was still in ICU and caught just in time. He’s experiencing a lot of what was posted here, neck stiffness, neck pain, sometimes headaches. These are are always worse in the morning. Did anyone find any kind of pillows, sleep positions or anything else that helped with the neck pain. He’s 1 1/2 months post op, so I know pain is expected but just trying to see if anyone has any good advice. Thank you all for your input!

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