In July 2012, Paloma-Nicole was diagnosed with Ameloblastoma in her jaw and she has kindly shared her story with us.
Prior to being officially diagnosed in July, I had noticed some swelling in-between my canine and first premolar lower jaw right side in January. For two weeks, I didn't pay it much attention and assumed I had cut myself or had some sort of inflammation from brushing my teeth too hard. However I noticed that it began to grow at which point I decided to pay my dentist a visit.
My dentist told me that I had a cyst and this was something that could be easily resolved. He set an appointment for a small procedure, but first he needed to do an X-ray just to confirm. Upon which he discovered that it was not behaving or looking like a cyst. I was referred to a hospital but between January and July the tumour grew at an extremely fast rate. I was in constant pain, it shifted the position of my teeth, it had a soap bubble feel and I would feel a cracking every time I chewed or spoke for long period of time.
My Ameloblastoma reoccurred two times. My first procedure was an enucleation in which doctors removed the tumour along with 4 teeth. This didn't particularly work very well because it reoccurred within 4 months. Doctors then decided to do another enucleation with bone cutterage, (surgery - scrape out, less invasive) It reoccurred within 6 months. Doctors for the third time decided to be more aggressive with the treatment and I had more than half of my lower jaw removed with segmental resection and free fibula reconstruction using my scapula bone (shoulder blade). This so far has been successful as I have been Ameloblastoma free since 2015.
My Doctor has been particularly helpful in my journey, answering any questions I have. Of course there are somethings that cannot be helped like hospital wait times, availability etc. In the earlier stages prior to be diagnosed, I kept being referred to trainee doctors who didn’t necessarily have the experience. As a young person and someone who is not medically informed, this is was quite horrifying because I didn’t know what was going on and neither did they. This then resulted in a very painful biopsy and a lot of justifying my pain and the reasons it kept turning up. So my advice is, if you feel something is wrong, be persistent until someone hears you out. An earlier diagnosis is always better for you.
Adjusting to life having dealt with Ameloblastoma in the beginning was difficult both physically and mentally. I had issues dealing with the scars from surgery and also regaining the use of my arm. I didn't feel particularly supported after being discharged from hospital, in terms of setting up physiotherapy or even therapy. I understand though that there are many people in need and some may fall through the cracks, luckily I had a very supportive family.
In the aftermath of the surgery and the loss of more than half my jaw, I’ve had to adjust the way I speak, eat and chew. The function of my arm is different and I have discovered my new normal. The loss of nerves in the lower part of my jaw means that I have to very aware of dribbling and spillage since I can’t feel when I may have something there. It's hard being sociable sometimes because dealing with things of this nature for me has taken a toll on me mentally, but everyday gets better.
What has given me strength is removing myself from isolation and sharing my story with others. Although I was extremely supported by my family, friends and doctors, Ameloblastoma is so rare that even they can't fully understand what you’re going through as much as they want to help.
You are not alone and you don't have to be afraid to talk about how you feel regardless of how inconvenient you think you are being. This is such a physical illness that it’s easy to forget about the mental. So my main message would be to try and be aware of your mental state.
By sharing and talking about my story I have found others who have suffer/ed from it and found that there is strength in numbers, that I am not alone. Going to therapy and talking about how I feel has also helped a lot, it’s important to be able air out my feelings and emotions.
For me I was super tied up in the physical, in regards to pain, appearance and function after surgery. That before I knew it, I had slipped into anxiety and depression, feeling extremely alone because Ameloblastoma is so rare. I wouldn't want anyone to feel the way I felt, so please find help and just know that there are people in place that can help you. I feel it’s crucial to just be able to speak freely about your feelings in regards to this and also seek out others who suffer/ed from this also.
Awareness is so crucial because the earlier it’s caught the less invasive treatment can be, and so many things can be avoided and the quality of your life may not be affected. It’s important to raise awareness period. Especially in regards to Ameloblastoma which is so unheard of, personally I didn't know it existed before I was diagnosed. People need to know what to look for so that it can be caught early. Early diagnosis can make a real difference and ensure people receive the most effective and appropriate treatment for them.