me, myself, and my ameloblastoma

Hi there!

I am still around, and I apologize for taking so long to get to your message.

The diagnosis is definitely scary. I'm very thankful that I live in Canada and had a good chunk of everything covered by the province.

The good news is that this tumor is overwhelmingly benign, with only approximately 2% of occurrences being malignant. The growth is aggressive, but there is very little need to worry about the cells spreading to other areas of the body.

It definitely sucks to go through the whole process, but it's doable and things definitely do get better even if it's a long haul. My process was a bit longer than most due to my chronic infections and then the pandemic.

I really hope that things move smoothly for you and your fiancé!

My apologies for being away from this blog for so long! I ended up getting pregnant, then having complications with the pregnancy (pre-eclampsia and HELLP syndrome) that resulted in a month-long hospital stay and a very premature birth (29 weeks and 5 days, born December 25th), which led to 68 days in the NICU. Since then, it's been a whirlwind of moving into our basement suite, adjusting to parenthood, and getting to all of my and my daughter's appointments. I've developed chronic fatigue and pain since the birth, as well as had continued liver and blood pressure issues, so I'm getting all sorts of tests for autoimmune disorders, liver function, etc.

Now, on to my teeth!

I finally have my final prosthetic! It was a bit of a journey, we started with a fixed appliance for a few months but found that it was simply too difficult for me to clean underneath the bridge and around the screws. Now I have a removable appliance that looks like a metal retainer with teeth attached, see below for photos:

^ Here it is from a number of different angles, including underneath where the attachment points are visible.

It definitely feels weird to have in, as I've gone nearly half a decade without my three lower left molars, and the metal bar feels strange to speak with, but I'm adjusting to it well. I'm still quite tentative about chewing on that side, but this is a functional appliance and I know that I need to use it or risk losing density in the bone graft.

I've had this appliance for nearly a month now, and it's quite comfortable to have in. I take it out at night and let it soak in its case with water and a denture tablet, then in the morning I rinse it off and stick it back in.

What really gets me about this appliance is how natural it looks once it's in. I can feel with my tongue that it isn't my teeth or gums, but the colour and shape and everything matches my other teeth so well that it looks like it's really my teeth!

I have a follow-up appointment regarding this appliance later this month that I look forward to.

It really seems like this is finally wrapping up! I will be sad to leave this blog, and I may continue updating sporadically if checkups or developments occur, but it seems like this journey is nearing its end.

I started this blog as a way to document my journey and store images and progress notes for others who may be undergoing the same or a similar experience. When my ameloblastoma was diagnosed, I could only find a handful of personal accounts about the lesion, none of which continued into the recovery process. It became my goal to to continue my account through my recovery and reconstruction, whatever came up.

I hope that this blog can be a valuable resource for those studying dentistry and/or oral pathology, but most especially for those that feel as I did - scared, overwhelmed, hopeless, and alone.

I now have bonded retainers on the top and bottom, as well as tray style retainers for night which I fill with MI Paste for remineralization, or Cresr Whitening Emulsions for stain removal.

Next Wednesday, I'll be seeing my specialist to figure out a timeline for getting my prosthetic in!

I recently saw my orthodontist and my specialist. They have agreed that the best course of action for my prosthesis will me a hybrid appliance, which means my braces are probably good to come off soon.

I'll need a procedure to expose the implant screws and attach healing abutments, and then once that's healed the prosthetic can go in!

Today, I received the contact information for our province's Minister of Health.

For those of you who don't know, based on my province's health coverage, only my initial big surgery was covered.

My followup procedures, braces, metal screws, and upcoming prosthetic are not covered by the province. I still live at home, so I am able to take advantage of my parents' extended health and dental coverage.

The way that our provincial healthcare works is that it covers things to do with the body, and things in hospital. Inside of my mouth is considered "dental" and is thereby not covered.

The extended coverage considers dental implants and prostheses to be "cosmetic," and so that is not covered either.

Our province will cover prostheses for limbs, partial hands and feet, breasts, eyes, noses and ears. The province will also cover maintenance of the aforementioned prostheses.

I do not believe that it is right or fair that my reconstructive prosthetic should be considered "cosmetic" and not be covered simply because it is not two to three inches higher.

Because my reconstruction is inside of my mouth, I will be having to pay tens, if not hundreds of thousands of dollars out of my own pocket for the rest of my life to purchase and maintain my prosthetic.

I lost a ~5cm section of my jawbone and three teeth due to a (luckily benign) aggressive cancer. I hate referring to it as "cancer" because I feel as if I am not deserving of the title of "cancer survivor," due to my not having had to go through chemotherapy and the typical journey that we think of cancer survivors having gone through. That said, the reason I did not go through chemotherapy is because ameloblastomas do not respond at all to radiation.

I've been wicked busy with school, so I haven't been able to dedicate as much time as I would like to this.

So, in the past little while, I've had my braces adjusted here and there, and a fresh new X-ray from the other day.

It's definitely interesting so see how my teeth have shifted, and to see the braces in the radiograph!

My top teeth are all in position, so we are just straightening out my bottom teeth before widening my bite. Top teeth have been chained, bottom teeth are still individual ties, and I now have elastics to wear at night.

In terms of adjusting this past month, this hasn't been too horrible. The first few days sucked, and I wanted to rip my teeth out of my head, but I've adjusted to them. The inside of my mouth has also gotten accustomed to them and I don't feel like I've got a cheese grater in my mouth all the time anymore.

But comapred to losing a chunk of bone and 3 molars and some hip bone, this is a cakewalk.

Excuse my shitty selfies, haha.

Today marks the first time I've played clarinet in nearly two years.

I haven't played since my surgery back in 2018, initially because I needed the jaw to heal, and then because I was afraid of how much of my muscle tone I had lost. I was so scared that I would be starting from zero and need to re-learn how to make the sounds happen. I was also concerned that the numbmess on my lower left quadrant of my lips would affect my ability.

Fortunately, I didn't lose as much as I thought I had! I picked it up and played a basic scale a couple of times. Then I played a higher scale, and higher, until I realized I was able to play all the notes that I used to be able to. I played a few of my favourite songs from my very dog-eared Hal Leonard Pirates of the Caribbean sheet music book, as well as some Andrew Lloyd Webber favourites.

I only played for half an hour, because my braces started to bother me, but I'll adjust to that in time.

I went to my regular dentist and had a cleaning, and then they did a filling on one of my teeth.

My jaw muscles are still sore, as always, so I'm taking time to stretch them, massage them, let them relax, etc. My specialist mentioned perhaps using botox in the future to ease the pain, as I'll likely have this forever now.

As much as I dislike being uncomfortable and sore, I still would always pick this over having my tumour still in my jaw.