Hello! I’m writing this post as I didn’t find a lot of first-person experience of odontogenic myxoma while I was researching on how to treat this weird illness.
If you’ve been told that you have odontogenic myxoma, I hope my story can help you during this period.
How I discovered I have odontogenic myxoma
A bit of background on my health. I’m a healthy person. I rarely get the flu or colds. I’m quite hardy.
I’m also a bit vain. I had been worried about my slightly protruding front teeth which kept cutting into my lower lip so I decided to get braces in June 2020.
During the jaw scanning, my orthodontist discovered that I had a small tumour that was pushing my wisdom tooth away in my right jaw.
There was concern that the tooth’s placement meant that my jaw bone was too thin and could break. So I went for surgery to remove the tumour, the tooth and four other teeth so I would have space for my teeth to move during my braces.
Thankfully the surgery went well.
It was a day surgery and I could walk normally after being discharged on the same day.
The doctors ran routine tests on the tumour. I didn’t give it a second thought.
Then I was called into the doctor’s. They said the tumour seems to be odontogenic myxoma which is a very rare tumour. They’re having another test done just to confirm.
The doctors told me not to panic about this.
I didn’t panic, at first, but I thought about reading up on it. There weren’t much information as most articles are by medical experts with no patient first-hand account.
Here was what I found:
Odontogenic myxoma is a very rare benign tumor that may arise in the maxilla or mandible, but which can be locally aggressive. It accounts for 3–6% of all odontogenic tumors.Wikipedia
Wow, an interesting tumour! How fascinating.
Then I got called into the doctor’s. I was sure there wasn’t an issue with my tumour. Then the doctors confirmed that it was odontogenic myxoma.
My hands turned cold and I didn’t know what to do.
Treatment options for odontogenic myxoma
I had three options for this:
- Don’t do anything and only treat it when it becomes worse. But we don’t know when that would happen. [One of the research had a man who didn’t have any reoccurrence for 20+ years and counting.)
- “Chemically” treat the bone area. But odontogenic myxoma is “wet” so we aren’t sure if we’re able to get rid of it 100%.
- Saw off the jaw area and replace it with my leg bone.
At this point, I was still at the private hospital so there was a plastic surgeon who would help with transplanting part of my leg bone to my jaw to make sure that the jaw still has blood supply.
But, the whole cost was six figures. I thought to myself, “I’d rather die than pay that sort of money.”
Thankfully, my braces doctor suggested that I get a referral to the National Dental Centre of Singapore (NDCS) for subsidized treatment.
I had to wait a while before I was scheduled to meet with a specialist at NDCS–you can skip the queue if you’re willing to pay the price as a private patient.
I was told the same ways of treatment for odontogenic myxoma, the only difference was for Option 3: We’ll saw off the jaw but replace it with bone graft.
The original option from the private hospital was a lot more complicated as it involved taking bones from my leg while bone graft is harvested from my hip bone.
The doctor also said he’d rather split the sawing of jaw bone and bone graft in two sessions since he’d rather have the wound recover well before the bone graft implants.
I also needed a dental implant as most of my jaw bones were going to be sawed off.
(Later, I had complications with my healing so I had two extra surgeries.)
A quick summary here about my surgeries:
- I had my first surgery in January 2021 to saw off a part of my jaw bone to remove the affected areas. The doctors placed two metal plates and a silicon in the affected area.
- In March 2021, I had a second surgery to reconstruct my jaw. A metal plate was taken out (because I complained how it made my jaw look bulky). The silicon was removed and bone graft from my hip and other sources were placed.
- [In May 2021, I had a weird swelling but no bacteria was found in the surgery site. The swelling has caused my bone graft to slowly dissolved.]
- In October 2021, I had a surgery to plant my dental implant’s root and minor bone graft. [Some swelling occured after this too.]
- In April 2022, I had gum graft surgery to fill up the affected area with my own gums.
- In December 2022, I had bone graft surgery since most of the bone graft from March and October were dissolved.
Healing from jaw surgeries
Recovery from the first surgery was the worst. I had a feeding tube for two weeks and the tube had a kink at the back of my throat so I was constantly in pain.
Tube feeding was also a nightmare since I never felt full. I’d lose the will to live if I were required to be fed through a tube for the rest of my life.
I’m thankful that I have hospitalisation leave so I’m able to rest while still having a job.
Why I chose the surgery route
I’m about three weeks after my last surgery (December 2022), my face is messed up and my braces is taking longer to finish.
I don’t like living in regret so I don’t regret my choice to go for the “sawing off my jaw bone” route but the road to recovery isn’t smooth.
I chose the surgery option because I wanted it out of my body. I don’t want to live in constant fear of “what if odontogenic myxoma spreads?”
I don’t regret the surgery based on that. (Though I keep thinking about the man who didn’t have a recurrance for 20+ years.)
I’ll pause the writing now and add in more when I’m inspired. I’m not sure if I’m ready to become the go-to person to answer any odontogenic myxoma questions. Do ask your doctors for more accurate informaiton.