Cut out Cody's tumor

I have a tumor in my jaw.

(An Ameloblastoma to be precise.)

What does that mean?

I am probably going to lose part of my face.

Bone, teeth, and maybe even more. 

 

A bout a month ago, I went into the dentist after a day of pain in my jaw. Seeing something  unusual, he ordered up x-rays and we started down this rabbit hole of unfortunate news. 

The red circle shows what my dentist thought was an Odontogenic Keratocyst (similar to an aggressive tumor) that will require an oral surgeon to go in and cut out of my jaw.  You can see the large shadowy blob in  the left side of my jaw where bone should be.

 

So I scheduled a consultation with Dr. Sashi, the oral surgeon, and a week later we followed up with a biopsy [go in and cut a piece out for lab testing)].

We three had the different possibilities going into the biopsy as two what the growth (and treatment) would be.  We hoped for the best possible diagnosis but instead, the lab results came back confirming the worst; an Ameloblastoma (meaning "enamel" "germ"), Typically hitting something with 1 in a million odds would be a cause for celebration and not a joy crushing dread.

After reading more about the tumor, I realized I didn't have an option; I had to get it cut out ASAP. If I did nothing and leave it alone, the growth will continue expand until its spread causes disfiguration and difficulties to eat & breath. Not only do we have to cut the tumor out, but also there around it. 

"Though the tumors are considered benign, surgeons must cut away large margins around the growths to try to ensure that it will not reoccur. Because the operation removes a portion of the jaw as well as arteries and facial nerves, the patients require extensive reconstructive surgeries and rehabilitation to regain the ability to smile and chew."

The surgeon recommends that we move on this as fast as possible because the longer we wait, the more time the tumor has to grow. With its location near a nerve,  I may end up permanently losing feeling in one side of my face if that nerve becomes compromised by the tumor.  Additionally, the compromised bone in my jaw means that one slip/fall on our Alaskan ice will likely leave me with a broken jaw. 

So..........surgery.  Damn, insurance would've been nice right around now. 

To get the tumor out is going to be a multi-step process.

1. We have  taken a CAT scan (3D X-ray) of the jaw/tumor and have sent it off to an engineer to begin fabricating a titanium plate with the proper dimensions for my jaw. (DONE)

2. Next we need to take a chest x-ray to check to make sure that particles of it hasn't spread to the the lungs. 

3. Once the plate is ready, we can schedule the hard part. Dr. Sashi (who has been very helpful and patient) will go in and cut out the tumor, one of my teeth, and the bone surrounding it. [They have to cut a section around the growth to make sure they get it all so it won't come back. -like removing a chunk of moldy cheese] It is at that time when he will be able to tell if he can save the nerve on that side of my face. 

4. He will then instal the titanium plate and a bone graft. [They will remove some bone tissue from my hip and place it, along with donor bone into where they took my bone from. My body will recognize the living tissues as being from my body and will accept the dead bone as part of me. The bones will then become part of my new jaw as they grow back together as one.

5. Stitch me up and most likely stay a night in the hospital while my face heals. 
6. Rest, Rehabilitation and Recovery.
7. Removal of  plate and make sure there is no recursion.

It sounds simple enough, right?     Well........

Here are the cost estimates from the doctor. If paying cash for the surgery, it would be around $50,000+ to fix my jaw.

- 1,500 Consults, x-rays, & biopsy (already paid)
-???? Lab testing of biopsy (waiting on a bill from providence) 
-300 Chest xrays to make sure tumor hasn't spread.
-8k to remove tumor & bone
-10k bone graft
-10-15k for titanium plate 
- 15k for surgery facility & anesthesiologist fees.
-??? Follow up & rehabilitation appointments. 

I am pretty sure that I qualify for Medicaid due to  being "low income" (the side effect of a happy & humble lifestyle) however we are not certain that Medicaid will cover all of the operation.

We think that they may not cover the titanium plate being "engineered" and would only cover a generic one. Dr. Sashi has reached out to his rep and will be asking about what options we have for the plate (or if Medicaid will even cover it). In addition to the the plate, we are not sure what other costs will not be covered. 

I have set the goal of this fundraiser to 15, 000 which will (hopefully) cover the custom titanium plate if Medicaid doesn't.  If there is anything left over, it will be applied towards paying for the other medical bills that this tumor will incur. 

 
Thank you for reading.

-Cody

 

Why pay for a "custom" plate?

Technology in the medical field has advanced pretty remarkably. Like holographic imaging screens from science-fiction, the details of an operation can be plotted & planned ahead of time for improved results.  One of those advancements in how they shape the titanium plate; it can be be fitted to the shape of my jaw ahead of time (using the CAT scan) so that the operation will heal better.  

Unfortunately, medicaid usually only covers generic plates and most likely will not pay for ones that have been custom fabricated to fit my face. The generic ones will work but are a subpar option when it comes to a surgery like this.

Rather than have it all planned out as smoothly from the start, there will instead be some "winging it" involved. Dr. Sashi will have to bend and shape the plate to my body while I am on the operating table with my face flayed out like the demogorgon from Stranger Things. Having to bend the metal to fit me in the middle of operating can create complications in an already majorly invasive surgery. 

I have begun training myself to smile using the other side of my face  but I am really hoping that the Dr. Sashi will be able to save my facial nerve.

(You might want to start oogling all of my smiling  pictures right now, be cause odds are my smile will be forever changing)