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caw (@caw)

Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: 4 days ago | Replies (127)

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Fully recovered I would say about eighteen months. I am quite a bit older than you so my recovery would likely take longer. I had phantom pains (actually occasionally still do) in my jaw and face, still not completely used to the area where there is no nerve feeling (numbness), and if I bite into something hard such as an apple, I may have a sharp pain. The bite pain I would think comes from the stress on the smaller size and flexibility of the new bone, which is not as rigid as the mandible. So I slice an apple with a knife and all is good. I also find it very difficult to play a bugle as my lips do not respond as before due to lack of nerve in the lower left lip. I'm working on it.
No, you probably will never be the same again. I think in many ways you will be stronger and understanding of the frailty of life. I wouldn't wish this operation on anyone. But just know, you will be fine, you will recover, and you will smile once again. Caveat: You might end up with a bit of a pirate smile, which is really cool.

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Replies to "Fully recovered I would say about eighteen months. I am quite a bit older than you..."

I really appreciate the advice it makes me feel a lot less alone and normalises the tumour for me in my brain. The phantom pains do sound annoying but I am sure it’s bearable compared to pain I experience now. I hope your mouth is better with the bugle in no time and the pirate smile makes others smile!

I was also wondering how bad are the scars and how long do they take to fade? Did you have to meet a councillor before the operation?