ameloblastomadiary

[ameloblastomadiary]

i'm not sure if you still use this blog or will even see this, but my fiance also as ameloblastoma and we're really scared. it's growing more in the back/cheek area than the lower jaw, but it's definitely growing. we've been trying to figure out insurance because we have none but we just don't want to wait much longer because you can see the difference on his face. if you have any advice or words of encouragement, just anything to lighten our fears, it would mean the world to me. thank you for making your blog sincerely.

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!

Just remember to take slow deep breaths and remember that this too shall pass. It won't always feel so big and scary, and I know you're both strong enough to make it through 💖

[ameloblastomadiary]

Update!

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.

This side account is linked to my main account, so I should receive notifications if messages are sent with any questions, etc. You may also feel free to follow me on Instagram at pocketwatchesandtea, it is currently set to "private" as I have photos of my daughter on there, but send me a message here with your account when you request to follow and I'll accept and give you access, as my x-ray photos and specimen photos are hosted there.

[ameloblastomadiary]

In case you're wondering why this year's updates have been extra slow going!

Hi everyone! I suppose it's finally time to let you in on our little secret...Aria @jainasolo1994 and I are expecting! My due date is March 7th 2023, and we are so excited and already so in love with this child. I am 18 weeks and 2 days along, almost halfway! I'm feeling good and have managed to avoid some of the rougher symptoms of pregnancy thus far. We are excited to share this news, and hope for your love and support as we embark on this unexpected journey together💖

(Quick disclaimer: this ultrasound photo is from July 30th, when I was 8 weeks and 4 days! I will have a better photo after my halfway point ultrasound in the coming week💕)

[ameloblastomadiary]

So apparently, I can't post images right now, and that's what's been keeping me from being able to post that I've been braces-free since June 14, 2022!

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!

Today also marks exactly 4 years since that initial dentist appointment where my tumour was discovered, so that's interesting. I've gotten some other worrying health news today, so it's been difficult to cope with that as it feels quite close to when my tumor was found. Fingers crossed that it all turns out well, I'll be seeing my family doctor on Tuesday to discuss that.

[ameloblastomadiary]

Finally an update!

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!

I'm so ready, it's been 3 and a half years without those molars for me.

[ameloblastomadiary]

Big Things

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.

Please wish me luck as I go to my provincial government to lobby for change! I hope that I am able to create positive change that will support myself and other survivors of oral cancers.

[ameloblastomadiary]

Had nothing to update for a while, but I've got a talk at UBC today so I did my makeup real cute

And my orthodontist says my teeth are moving in the right direction, so that's finally some good news!

[ameloblastomadiary]

Long time, no update!

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!

I also gave another talk about this whole process last night via Zoom to a class at UBC. I feel very confident with how it went, possibly being the best lecture I've delivered to date! I was able to invite some family and friends to watch, and I felt very good about the whole thing.

[ameloblastomadiary]

Had my first braces tightening today!

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.

Also, I got my elastics on the first try so I'm quite proud of myself.

[ameloblastomadiary]

A Huge Milestone

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 really feel like myself again, and playing this instrument really feels like I'm coming home to myself.

[ameloblastomadiary]

My braces went on yesterday! I like them aesthetically, but they are super sore and uncomfortable and bumpy inside my mouth. I'll post a more in-depth post later on them!

[ameloblastomadiary]

Whoops, I forgot to post an update the other week!

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.

It's been a long road, but I really think we're getting to the home stretch now. I get my braces put on next week, and then once my teeth are in place, we will put in my prosthetic. Then all that needs to be done is the maintenance of my prosthetic, and probably annual checkups to make sure my jawbone is healthy and not growing more little friends.

[ameloblastomadiary]

Another update!

I saw my specialist this past Wednesday and things are going well! I am healing well, and I got the OK to start braces. I called the orthodontist's office and they've scheduled me in for July 8th, so from that point I'll be braceface for a while!

[ameloblastomadiary]

It's been a while!

This pandemic has completely knocked my recovery plan out of whack, but finally things are looking up again. This Wednesday, June 3rd, I will be finally seeing my specialist for the first time in months! We are going to take a look at how I'm healing, and hopefully I'll be ready for braces soon, and can get that over and done with. I am just itching to get my prosthetic teeth in, and to have this all over. I like being able to speak about my experiences, and I find the process very interesting, but I'm ready to have a normal mouth again!

[ameloblastomadiary]

Just wrapped up my talk at the Pacific Dental Conference!

I feel like it went very well.

Unfortunately, my camera stopped recording after about 11 minutes, which is really too bad. I had wanted to record it and post it on youtube, but I guess that can't happen. Next time I do a talk, I'll try to record it.

[ameloblastomadiary]

My latest x-ray!

The latest of my x-rays, taken just after my surgery on Wednesday! Note the addition of three very expensive screws, and some repacked bone graft! #xray #ameloblastoma #surgery #surgeryrecovery https://www.instagram.com/p/B9IP0vwnWob/?igshid=1plvchld12c37

[ameloblastomadiary]

Surgery Update!

I just had my most recent surgery this past Wednesday, the 26th of February, 2020. It went surprisingly well, despite a few complications.

The bone in the back of my jaw was not stable, as per usual, and some bone was contaminated again, so my surgeon had to scrape out the contaminated bone and repack the graft.

I also woke up once or twice, which has always been my biggest fear with surgery, but it wasn’t scary, and I was so frozen that I couldn’t feel anything. I remember opening my eyes and seeing them working and being told they weren’t done yet, so I went back to sleep. The other time, I remember hearing the drill, but it didn’t scare me because that’s a normal jaw surgery sound. If I had woken up and they were doing something else I would’ve been scared, but it was all as expected, so I was fine.

Despite this, we were able to get the three screws in for my implants! I’m still tender today, but every day gets monumentally easier to deal with the pain. I’m not even especially swollen as evidenced by this photo:

(Look how cute my bangs are!)

I have a followup appointment next Wednesday, March 4th, then my talk on the 7th at Pacific Dental Conference! If I can get someone to record the talk, I will post it to YouTube and link it here, as well as on other social media.

I am back to liquids/blenderized food only again, for at least a week. Hopefully, it won’t be 7 months like last time! I don’t expect to be able to eat hard crunchy stuff, but I’m hoping to be able to have bread, pasta, rice, oatmeal, etc, since that’s all more filling than just smoothies, yogurt, soup, etc. I can do the all-liquid thing, but I don’t like to.

Once the bone is more integrated with the screws, I probably will be able to eat normally.

And at some point, maybe in a month or so, I’ll get those braces on, get my teeth in the right position, and then we can pop on the prosthetic and be done with this all!

This was yet another surgery, but it’s finally moving forward.  I feel like this is actually moving towards living normally again, as opposed to just going back in to clean out bad bone because I just didn’t heal properly last time.

Here’s to starting to see the light at the end of this long, long tunnel!