My 18 year old son was recently diagnosed with an ameloblastoma in his upper right jaw. The tumor was discovered incidentally during preparation for bone graft reconstruction of his upper front jaw to prepare him for eventual implants to replace the 4 front teeth he lost in a bike accident at age 11. Ameloblastomas are not classified as malignant as they rarely metastacize distantly - though they are anything but benign. The only effective treatment for this infamously aggressive and locally invasive tumor is radical surgery to remove everything the tumor touched plus 1 cm of healthy bone and tissue. Fortunately, the tumor was discovered before it invaded the bone at the base of the brain and orbital socket.

Luke is scheduled for surgery on 7/16 to remove three teeth (two molars & a pre-molar), the upper right jaw bone from the canine tooth back, gums, roof of his mouth almost to the mid-line, some cheek tissue and sinus bone. I have been arduously searching the internet for information on what to expect regarding his post-surgery condition - especially as regards to eating, speech, and appearance. Ameloblastoma's are so rare (less than 1/10th of 1% of all upper jaw tumors) that there is little information to be found other than that radical surgery is the only treatment considered at all effective. I did find a dental newsgroup that was helpful in convincing me that there are no other treatment options for this type of tumor but they provided little to no assistance regarding what to expect after surgery.

I found this board this morning and thought there might be some members here that had undergone similar surgery in the treatment of their disease and would be willing to provide information on what to expect. The oral surgeon and prosthodontist have given us some info (to some extent I think they do not want to tell us much....and some of the information they provide conflicts, i.e., oral surgeon says no reason Luke can't start college in 5 weeks and also wrestle as planned in the fall; prosthodontist says perhaps Luke will not be able to begin college until January and may not be able to wrestle) as to recovery and after-effects. We have not had any opportunity to communicate with an actual patient who has undergone a similar procedure. I want to know what to expect in order to be of the greatest assistance to my son as he copes with this devastating condition.

I would be very grateful for any input or advice. Thank you in advance.

I am sorry that after a month we have not yet had a poster that has had a similar situation to you that can help with your questions. While what your son has is not rare, it is not as common as the Squamous Cell Carcinomas that most of the visitors here have had. I am posting to you so that your original post will be brought back to the front of the current list again.

Thank you, Brian, for your response.

Fortunately we were able to meet and talk with an oral cancer patient at the prosthodontist's office just prior to my son's surgery. The lady was 6 years post-op having had almost the exact same surgery that my son ended up having. She has been very helpful and supportive and was able to provide a lot of information to us regarding the surgery and the after effects. I was also able to find an ameloblastoma group on Yahoo groups and corresponded with a couple of people who had similar surgeries.

While my son's surgery was fairly radical and traumatic, he has made tremendous progress and is healing quickly. In fact, I just got back late this evening from taking him to college - less than 5 weeks post surgery. His prosthodontist made a temporary obturator that is working very well. He is speaking and eating normally and except for the care the obturator and surgical site require, I expect his first weeks as a college freshman will be similar to that of other entering students.

I feel like it is almost a miracle how well things have gone. Even the oral surgeon is surprised at how the hole is closing up and is now saying that perhaps one day, he will be able to have surgery to close the opening. I am also looking into reconstruction possibilities - even though both the oral surgeon and prosthodontist are pessimistic whether reconstruction will be possible eventually.

Thanks again....

Peggy