Numbskull and The Scar

More side effects:

Numbskull:  One of the strangest side effects of brain surgery has been having a numb scalp. An itchy numb scalp. When they shave your hair off and cut into your scalp to get to your skull, nerves are severed. Muscles in your scalp are severed.  Where that incision is made will change which muscles are cut, obviously. With a frontal lobe tumor, it required a 6 inch incision just behind my hairline. As a result, some muscles that I use to chew were impacted. This didn’t mean I couldn’t chew, but it felt like I’d also had some serious dental work done. Aside from the jaw pain, the rest of my scalp was numb…but itchy.  How does something that you can’t really feel itch so badly?  I have no idea.  Now, 5 months later, most of the feeling in my scalp is returning. While it’s improved, I still have some pain in my jaw. These are minor side effects of my experience and almost not worth mentioning — except that they’re noticeable to me every day.  As an aside, having a numb scalp can also be a side effect of Multiple Sclerosis which is another perplexing and unpredictable disease that needs research funding.   You can learn more and help support a good friend of ours who’s also experiencing a numb skull – just click here.
The Scar: As I mentioned, my scar is about 6 inches from just above my left ear to the top of my head – right behind my hairline. They shaved just enough hair off and when it all grows back, you should barely be able to see that scar. I had sutures, some people get staples. I think the surgeon chose sutures because they cause less scarring and because he’s kind and didn’t want me to have a scar that would terrify my children and their friends.  Maybe not, but I like to think that’s the case.
After a craniotomy, you also get strange bumps around the site where they’ve removed and replaced your skull after noodling around in your brain. These are generally small and unremarkable and will be hidden under my hair (assuming it does all grow back), but I have one bump that will never be covered by my hair. People probably won’t even notice it unless I point it out to someone…at which point it will become enormous in their minds and they won’t be able to stop staring at it, ever.  I also have a ‘line’ right above my left temple.  Essentially, the shape of my face has changed a little and my skull has a ridge or my temple has become a little more concave, like I’ve had part of my brain removed or something. I’ve lost weight through this process, and I think it’s made that change in my bone structure become more pronounced.  It’s like having well-defined cheek bones only it’s higher (as in nowhere near my cheekbone) and only on one side and it doesn’t make me more likely to become a super model.  I’ve just started to brave the world outside without hiding under a hat – my daughter reminds me to not tuck my hair behind my ear or wear my sunglasses on top of my head because it pulls my hair back. She tells me it looks ‘freaky.’  I tell her it’s a battle wound that I should wear proudly, just like my belly button (which was totally changed by my pregnancy with her).  It means I’m a survivor.

 

14 thoughts on “Numbskull and The Scar

  1. K, this has been just amazing. Beyond what everyone is saying about you being brave and stuff (which is true), you’ve also been a great teacher. I’ve learned lots that I’d either assumed or had no idea about. MUCH respect and love.

    Two questions, please:

    1. Have you still been able to avoid the C word with the kids? They both are wicked smart so this would surprise me.

    2. Were you writing before this at all? I understand part of the motivation to do this blog, but your style is such that it seems you’re very comfortable with doing it. Any thoughts on your desire to share this with others being linked to the changes to the parts of your brain that handle emotion/expression?

    Love Love
    YBIL

    E. Chris Wilder, Executive Director
    VMC Foundation
    2400 Moorpark Ave. Suite 207
    San Jose, CA 95128
    http://www.vmcfoundation.org
    408/885-5299

    Follow the VMCFoundation on Facebook!
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    Have you seen my blog? It’s a great way to keep up with happenings around VMC, healthcare in Silicon Valley, or whatever is on my mind (I know, could be scary). Anyway, check it out: http://vmcfoundation.org/vmc/wilder-side-of-health-blog/.

    • I can’t claim to be an expert beyond being someone who’s gone/going through the experience. I’m learning more each day.
      My answers:
      1. We’ve not been overt about using the C word. They know what’s happening and we’ve been very honest, but we have to temper that with what’s appropriate for our sensitive, worry prone 9 and 6 year olds. Cancer can mean A LOT of different things and has some very scary connotations – but we them to live their lives free of constant fear. We’ll have deeper discussions with them when it’s necessary. There are some great books about talking to kids about cancer – a topic for another time.
      2. I have always written in some form. I’ve been an email, not voicemail kind of person. I used to write more creatively when I was younger, but then had a teacher who sqashed my spirit a bit. Many people have suggested I write about my experience – for myself, to help others if possible – I was never opposed to the idea, but there are many ‘cancer experience’ blogs. I had to get past the fog to find my inspiration. It may serve more as my therapy and a way to keep family/friends informed, but hopefully it will help others who are (or have a loved one) going through something similar. I don’t think the tumor had anything to do with it other than giving me something to talk about.
      K

      • I can see the internal struggle between wearing your ‘bald’ spots as a battle scar (as I would do) and wanting to keep things normal for the kids. It’s these MAJOR details that you are so eloquently sharing with us (your teacher be damned….They don’t know everything), that help make us more supportive (and less reliant on guidance) for you. Oh, and I’m done complaining about my stressful job now. Thanks for the reset. XOXOXO

  2. Bad teacher be damned. You’re engaging and witty. Thanks for keeping it real. You are more than surviving, you are inspiring.

  3. Hi Karyn,

    Your itchy numb scalp is really interesting to read about. Reminds me of the phantom limb feelings of people who have lost appendages in wars and accidents. I vote to wear your battle scars with pride! Teachers should never squish a kid’s inclination to write. Bad teacher!! You are helping to erase a lot of ignorance through this blog. 🙂

  4. Hi Karyn, I’ve worked with Chris W for many years and through him, have gotten to know Todd a little. I just wanted to say thank you – I think your posts are inspired – honest, refreshing, informative. I spent about 18 months being a caregiver for a dear friend with cancer (and yes, he’s still fighting the good fight!). Your observations about chemo, radiation, and the effects they have on the mind and body helped me understand some of things that he was experiencing but wasn’t able to verbalize – at least not nearly as eloquently as you have. And these things could frustrate me from time to time…. I have a much better understanding now, so thank you for that. I look forward to reading more and learning how you’re doing, mentally and emotionally as well as physically. Stay strong, you are an inspiration to so many. Hold the thought…

  5. I have found this post late but can definitely relate. I have the same scar from tumor removal on my frontal scar and the numb skull and itch drives me insane. I am 5 months post-op and just starting to get my feeling back. Found it very interesting about your jaw pain, haven’t experienced that.

    • Second that, I can feel an itch but when I try to scratch I feel nothing. It’s 2.5 months post op for me, and that area is still very numb. When did yours end up getting feeling back, if ever I hope.

      • It took about 6 months to a year to get the feeling back on my scalp, especially satisfying in the fact that I could scratch my head and feel it! Someone recommended on a similar board Paul Mitchell Special Tea Tree Shampoo and Conditioner and I found that to be very helpful too.

      • My first surgery, it took longer than my second (& follow up 3rd). Probably in the 6 month time frame. I’m 4 months(ish) out after my second and I seem to have all of the feeling back. The itchiness is the worst because your head is itchy, but when you scratch there is no feeling. I think that frustration is a sign of those nerves healing.

  6. I had a ruptured aneurysm and had to have a clip installed and titanium plate and screws. I have almost that same residual look that you do. Although my scar runs from front of scalp to back behind left ear. My left eyebrow feels horrible, really bumpy and a I have that dent in left side of forehead. Post-op, for maybe 6 mos to a year I had a tickle on left forehead when I brushed my teeth on left side. It has since passed since I am now 15 yrs post-op. I do not care for that dent, as I really notice it, no one else seems to….I just try to think of it as I AM A SURVIVOR…and I truly am…my family had signed organ donor papers as I only had a 10% chance of survival. I am alive and kicking better than before, maybe I can attribute that to my youth, as I was only 28 when I suffered the bleed that changed my life.

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