For about 3 years before I was diagnosed, I suffered from earache, jaw ache, nerve tingles in my jaw and teeth and a lump appeared behind my last molar about 18 months prior to diagnosis. My gum sometimes felt tender to the touch on my right side and underneath my chin would feel sore to the touch along my jawbone. I would get a stiffness and sometimes a 'clunking' sound from my right temporomandibular joint when eating something chewy, like a Maoam sweet. Earache was my main symptom though.
Getting a diagnosis was a long process.
My dentist just kept saying it was an abscess and giving me antibiotics without x-raying me, despite having a visible lump behind my molar and nerve pain the last time I had an appointment.
I also visited my GP on numerous occasions due to earache which I now know was caused by the tumour pressing on nerves (I've still got the earache as the nerve was irritated by my surgery). I was only x-rayed after visiting an emergency dentist who said I had a mass in my gum which was probably a cyst. My own dentist then x-rayed me and made the referral to the Charles Clifford dental hospital in Sheffield, where a biopsy was taken. It was thought I just had an infected, impacted wisdom tooth so I went to the dental hospital on my own to be told that I had to have a biopsy the very next day as it looked like a mass had eaten away my jawbone - and it had! It was awful - not a pleasant drive home and not a pleasant wait for the results. I am petrified of dental work, so it was really traumatic and very painful having the biopsy. Nothing compared to a jaw resection, but I didn't know that at the time.
I had my surgery at the Royal Hallamshire Hospital under the care of Mr Muzzammil Nusrath, consultant oral and maxillofacial surgeon, who is incredible.
I had a fibula flap jaw resection. Half my right mandible and soft tissue in my mouth was replaced with my fibula from my left leg, along with skin, muscle, veins and arteries from my leg to rebuild parts of my mouth. It is all held together with titanium plates and screws.
I have healed very well and walk with no problems. I can talk clearly but will need a lifelong soft diet. My ear and jaw still ache particularly after talking a lot and one side of my tongue is permanently numb, but it is all manageable.
I am still having follow up visits and have had an operation to 'de-bulk' my new mouth parts and tidy up my neck scar, which had puckered slightly due to an infection. Everything is healing well.
There have been many positive experiences. I am lucky to have a very strong family and friends support network.
I have taken stock of my life and made positive changes already.
I now work part time and have a much better quality of life as a result and understand that I need to prioritise looking after my mental and physical health. I have spent more time with my parents. I’ve lost weight and made new friends who I have supported through their diagnosis and surgery. My marriage is stronger than ever. My medical team are fantastic. Of course, it has been terrifying, painful and traumatic but I have found a strength I did not know I had and for me that is a massive boost.
My family and friends, particularly my husband, have been a source of strength to me. I have recovered really well and overcome terrible fear and for that I feel very proud.
My message to others is to believe that you will overcome this - that you will feel like you, with some adjustments, again. That some moments will be terrible and others wonderful. That every small triumph is a step closer to recovery and to look to those you love and remember all the things that make life worth it.
If my tumour had been spotted earlier, such drastic and brutal surgery could have been avoided. Ameloblastoma is so rare even dentists don't really know about it. If left unchecked, which could so easily be done, my tumour could have gone into my brain or caused more damage to my jaw.