Blog Post # 1
Hi all Blakely here!
I’m starting this blog as a way for family, friends, and future jaw surgery patients to have a way of checking in on my progress.
So a quick background on where this all began ↓
In October 2016 I awoke to one of the scariest feelings in my life—my jaw had locked shut and I was unable to open it. I eventually was able to manipulate my jaw and it unlocked! YAY! After this horrific experience, I thought my jaw problems were now behind me— little did I know. So after this experience life went on as usual and my family began packing for our move to Colorado. Once we moved, my life would never be the same. I woke up on January 1, 2017, to my jaw once again locked shut—only to my horror I was unable to unlock it. This locked state lasted for 5 months—-yes FIVE MONTHS! Eventually after consuming more that my weight in Ben and Jerry’s, as I was unable to chew, I found an orthodontist who helped identify the problem. On May 15th, I was put in an acrylic splint and was told all my problems would be fixed in a matter of a few months. Well fast forward 7 months and my pain is ten times worse plus I am only able to open my mouth 15mm. (40-50mm is normal) I went to surgeons, dentists, specialists, naturalists, internists, orthodontists, physical therapists and even applied to the Mayo Clinic for help. My body was shutting down and I couldn’t see a future without pain, suffering and doctors offices. Finally, after contacting the best tmj specialists in the world, Dr. Rocabado health seemed possible (he is from Chile so thank God my dad is bilingual and was able to call the office for help). He referred me to someone he personally trained named Dawn Scandalcidi who just happened to live in Denver! After just one visit, she was able to completely diagnose me and oh man was I in bad shape. To start: my once beautiful dancer arches had completely fallen, my ribs were out of place, vertebra were twisted, my hyoid bone was too high and impeding my breathing, hips weren’t properly positioned in their socket, temporal bones were out of position, my stomach was sooo puffed and even trying to digest just applesauce caused it immense pain. Topping all of this off was the root of the problem— my jaw. My right articulating disc was stuck to my temporal bone thus not allowing me to open my mouth and causing unrelenting excruciating joint pain.
So after hearing all of this, I pretty much thought alright well I had a good run but, I am officially dying.
Dawn (mentioned above) reassured me that I was not yet dying but getting better would take A LOT of work. The first step was to put all my bones back in place which just to let y’all know was not fun. Unfortunately, they only stayed in place for a few days and I am still struggling with them popping out. (More on this later.) The next thing I needed was steroid injections in my jaw joints….I know ouch right! I wasn’t too happy to hear this news. So 2 weeks later, the day before Thanksgiving, I was sitting in a maxillofacial surgeon’s chair about to have the injections. Lets just keep it simple and say I will never forget the horrible pain and feeling I had during those shots, and still get worked up just thinking about it. After they were finished, I could only open my mouth enough to shove a vicodin pill in that helped manage the pain for the next couple days.
We drove back to visit Dawn a week later and she once again checked my jaw to see if anything had changed. To all of our astonishment, my articulating disc was no longer stuck to my temporal bone! The steroid injections had pressurized my little joint capsule so much that the disc popped off…Hallelujah!! This result saved me a surgery! It was not the expected outcome so I think my guardian angel convinced God to grant me this miracle. 🙂 I see Dawn twice a week for jaw and bone placement therapy and just got a new orthodontist as my case was too complicated for my orthos in the Springs. Dr. Lindeman, my current ortho, is looking all over the country for the very best surgeons and getting opinions on treatment ideas.
So now we jump to February, unfortunately I am so sick that I had to medically withdrawal my entire junior year of high school. This is just absolutely devastating for me. 😦 I am still seeing Dawn weekly for therapy but my ribs and vertebra have yet to stay in place and daily powerful migraines are really getting to me. Dr. Lindeman has found the best surgeon—Dr. Gunson. Originally we were hopeful to avoid major jaw surgery but unfortunately my joints are currently being compressed and double jaw surgery soon is the only solution. Dr. Gunson, my surgeon, lives in Santa Barbara, California, so we will be traveling out there this fall and staying for a few months until I am able to travel home. Typically a surgery this invasive is done on individuals no younger that 22 but the health of my jaw joints simply can’t wait that long. The surgery includes breaking my upper jaw into multiple sections, and breaking my lower jaw. I am currently waiting for a digital consult and will blog once I know more about the surgery. I got pre-surgical top braces and a bottom splint a couple weeks ago. It’s so surreal to think that this is my life now. The title for my blog “The Girl with the Glass Jaw” is a joke among my team of doctors because I can only have soft foods and am constantly taking every precaution to protect my precious jaw.
Prayers or good thoughts are ALWAYS appreciated. I don’t know how I would have made it this far if not for my amazing family and friends’ unending prayers.
Thanks for reading and following me along this journey. Pictures with next post.