Thursday, February 5, 2015

The Post You've Been Waiting For (If You Have Ameloblastoma)

Before I had my surgery, when I researched people who had survived ameloblastoma (which spellcheck wants to change to "ectoplasm" - and that's awesome), I was discouraged by the number of people who began to document the journey to recovery but never finished it. I told myself that I would not be one of those people - that I would complete MY story if only so that the next person diagnosed could see this process from beginning to end. The good, the bad, and the ugly. 

But my surgery was back on September 17th, and here I am almost five months later, and I've said nothing about it. At least, not anywhere that anyone searching for it could read it.

When I was in high school and into college, many of my writing teachers advised that to best tell an autobiographical story, the story-teller needs to be far enough removed from the situation to have reflected upon it. It can be therapeutic to write when emotions are raw, but to accurately relate what happened, time must pass. I've found this to be true in regards to my surgery, and I think I'm ready to talk. 

I'm okay. I'm healthy. I'm recovering. Life is - for all intents and purposes - what it was pre-tumor. And I'm grateful for that and for all the blessings and love I received during this difficult season of life. 

But, I'm also human, and what I went through was hard. 

First things first - to recap, this is what happened.


See that section of the model between the two, faint blue lines? That part of me no longer exists. A team of about five surgeons cut out and removed approximately four centimeters of jaw, tooth, and nerves (and that purple blobby thing which was the tumor) and replaced that section of bone with an equivalent piece they cut from my hip, as well as that fun metal jawline you can see in the image (It was screwed into my bone and is still there. And no, I don't set off metal detectors.)  The surgery itself was about five and a half hours long, and it went well.
The morning after surgery...pre-swelling
I couldn't eat or walk or even stand without help - but I didn't need any sort of pain management once I woke up from the surgery, and for that I was grateful.  Twenty-four hours later, I was released with a walker and a lot of instructions on how to recover at home.

The swelling was intense and peaked around day three. If you're wondering whether or not I'm comfortable sharing these pictures - I am not. I, like most people, am more vain that I care to admit. I have pride issues, and part of my pride issues is that I DO NOT LIKE to be seen unless I'm "put together." I don't even like admitting that to myself, let alone the Internet, but it's true. However, I feel it's important to share this, and important trumps pride, so I'm getting over myself. 

Holy crap stage
Basically, I went from not looking like I had a tumor, to having a tumor removed, to looking like a giant tumor was taking over my entire head. Or that I was a monster who had eaten my former self and was slowly taking on her likeness.

The surgeons were able to make the necessary incision in my neck fold (that's an attractive word, isn't it?) so that once healed the scarring would be as discreet as possible. My neck incision required 17 stitches (pictured), while my hip required only 14 (not pictured, because this is a G rated blog... well, sometimes). I am looking forward to the opportunity that - when asked about my scar - I can tell someone I had a head transplant. Because honestly, that's sorta what it looked like. 
Neck stitches and more swelling
During the ten days after surgery, my body did show signs of healing. I remember being amazed at how quickly I was able to walk again. I remember also being very hungry. Very, very hungry. And very, very grateful for all my friends who had bought me Panera gift cards so that I could "eat" soup. My mouth opening had been reduced to around ten millimeters at first with the hope that I could eventually reach 30 millimeters with time and stretching. Someone who could open their mouth 40 millimeters is considered to have a wide opening. Pre-surgery, I could fit both fists in my mouth at the same time (again, not pictured, but it's totally true). I basically had a flip-top head (pictured). So, to only have the hope for 30 millimeters was discouraging.  (UPDATE: I'm proud to report that last my surgeon checked, I'm opening WIDER than 40 mm - and I can get MOST of one fist in, in case you were wondering) 

Artist's rendering of how wide I could open my mouth pre-surgery
What was also discouraging to both me and to my doctor was the rate at which my swelling was subsiding. When I returned to work thirteen days after my surgery date, I still looked like this:

But, my stitches were out of both my neck and my hip. So, I was taking the bad with the good. 

With stitches
Without stitches
It was at two weeks and two days after my surgery when I started to run a fever. I wasn't in any pain at all, but I was lethargic. We called my surgeon the following day and he actually performed a house call (which is unheard of and shows his dedication to his patients). After just one look at me, he sent me back to the hospital with a suspected infection in my jaw.

When I originally went to the hospital for surgery, my husband and I had taken every measure to ensure life would be uninterrupted for our daughters. We had planned then for me to be in the hospital for at least four days, but I had been released after one. It was a shock to be sent back with no time to plan, no one to watch our children and no idea when I would be getting out. 

Worst case scenario when I was admitted was that I would have to have the bone graft removed from my jaw (another surgery), heal (without that bone in my face), and have the same surgery performed again months later by cutting out a piece of my other hip (another surgery). 

After about four hours, I was cleared of worst case scenario and just told I would be staying there until my swelling began to reduce. There are many horror stories I could insert here from that hospital stay (But who doesn't have those? And unless you're having a baby, who actually enjoys going to the hospital?), but instead I'll just say that I was kept there for four long days before I was finally released looking more like this.
About three weeks post-surgery
I was put on antibiotics for three weeks following my release, and from this I developed something called "drug fever." Every time I would take my medication, about an hour afterward I would become completely lethargic and get a fever of around 100 degrees. This of course terrified me because I assumed each time (for the 10 days in a row this happened until we discovered what was going on) that my infection was returning. 

It was also during this time that something else became apparent. I had known prior to the surgery that I was going to lose sensation in a section of my mouth and face because in order to remove my tumor, a nerve had to be severed. This was not a "maybe you'll lose sensation" - it was definitive.  On the list of "potential" side effects of was the lost of motor function. As the swelling finally resolved, I noticed that I didn't have full function of my lower lip. It was lagging when I talked and smiled, I would chew on it without realizing it. When I opened my mouth it would creep in over my teeth and I would have to manually pull it back down with my fingers. 
After (now skinnier thanks to not eating for six weeks)
The change looks subtle in person, but it's very noticeable in pictures. And I'm completely self-conscious about it. Additionally, underneath my chin and extending to my throat there is a large mass of protruding scar tissue beneath my skin that "may or may not" resolve. If I want it removed, it will be an additional surgery with an additional hospital stay, heal time, and risk for infection. 

So, in the meantime, since I don't want to do any of that, I'm just becoming very creative with how I pose for pictures. 

I wish that I could say that I bounced back from all this with a spring in my step and a song in my heart, but I didn't. And I don't think I was supposed to. I went into this with a positive attitude and faith that God was going to use this time in my life for His purpose, and I still believe that's true. But part of recovering from this whole ordeal is processing through it all. It's realizing that sometimes random. awful things happen to people. It's feeling the love of my community as they rallied around me, supported me, and prayed for me. It's being depressed for awhile. It's watching too many movies on Netflix. It's having a huge writer's block. It's not feeling pretty. It's feeling guilty for feeling so vain that not feeling pretty bothers me this much. It's learning how not to value myself on my appearance and realizing how much I did before all this. It's - as a dear friend of mine puts it - recognizing the beauty from the pain.

If I had waited until I was "fully recovered" from this to have written about it - I would have never written anything. But, I'm a writer.

I hope that if you are someone who stumbled upon this because you have ameloblastoma that you don't find my story discouraging. I am not discouraged. I had periods of discouragement, but they passed. And yours, when you have them, will pass, too. And if you need a cheerleader in the meantime - contact me and I will personally break out the pom-poms.

Thank you to everyone who stuck by me through this and never said anything like "at least..."


  1. I just wanted to say thank you so much for this post(im not really sure if you'll see this or not). This post really helped me. Im 17 and about a week and half ago I was also diagnosed with Ameloblastoma. I'm scared out of my mind but keeping a brave face for my mom. Ive been worried about what I'd look like for prom and graduation and thanks you to you I have an idea. I was hoping to find something like this and you really answered pretty much all my questions. So again, thank you so much.

    1. For some reason, there are a lot of comments here that I didn't get notified about. So sorry that I didn't get back to you sooner. I hope you have had a great recovery! Please contact me if you'd ever like to chat!

  2. I just wanted to say thank you so much for this post(im not really sure if you'll see this or not). This post really helped me. Im 17 and about a week and half ago I was also diagnosed with Ameloblastoma. I'm scared out of my mind but keeping a brave face for my mom. Ive been worried about what I'd look like for prom and graduation and thanks you to you I have an idea. I was hoping to find something like this and you really answered pretty much all my questions. So again, thank you so much.

  3. My friend is about to go through this, I don't know what to say or do to help. Please share what was. Oat helpful to you ...thank you for sharing.

    1. Sorry for the delay - I didn't get notified about your comment. Is your friend on the ameloblastoma FB page? That is a great place to find friends and community!

  4. Hello,
    I too have been operated for ameloblastoma, but the line of treatment is different from yours. My treatment involved bone being grafted from my left fibula, for reconstruction of my jaw. Mine was a bigger tumor and a case of relapse after the initial one being removed through curettage in late 2014.
    I was operated on the 9th of this month, and am in the post operative recuperation phase. Are there any special precautions that need to be taken by me?

    1. There are a lot of people who have had that same type of surgery on the ameloblastoma FB page. Have you looked there? I have found much support there!

  5. Hey !!! It's really an inspiring story !!! Even I'm facing the same scenarios!!! Ur blog is really helping me !!! And yeah wish I could meet u personally and give u a real warm hug !!!
    - rajat more

  6. Thanks for your story. I am just beginning mine. Mary Jon Girard

  7. Thank you for your story. Mine is just beginning

  8. Hi Lisabeth,
    Thanks so much for your wonderful and honest article on the thrills of having an Ameloblastoma removed.
    I'm in the U.K. and have recently been diagnosed with the same thing. The surgeons are recommending essentially the same treatment as you have had - except that here they usually take a piece of the 'spare' bone at the back of your lower leg - the fibula - to replace the damaged bone. It does all sound really challenging and I've been looking at all possible alternatives as you would expect - but nothing else much available at present!
    I wonder if I can keep in touch with you as my treatment progresses - all moral support is welcome on such a traumatic procedure!
    Best wishes,

  9. Absolutely! Keep me posted at - also on Facebook there is a very helpful ameloblastoma support group. I'm happy to talk with you anytime!

    1. thank you for sharing! I too will be going through this same surgery out in ucla medical center. sucks that I will miss work do to this but it's a must! my doctor also said the lower leg bone! praying it all goes well!

  10. Hi Lisabeth,

    Thank you so much for writing this post. I am just now embarking on this 'journey' with what the surgeon thinks is ameloblastoma... and Google can be a scary place. I'm glad to hear your perspective and although it will and already has been difficult- I appreciate the hope that everything will eventually get back to normal in my family's life. I'd like to continue conversation with you as someone who has been through it if you wouldn't mind.


    1. Sure! I'm happy to chat anytime. Send me a note at Let's see if we can calm some of those nerves :)