Friday, October 5, 2007

"Hi, I have Ameloblastoma. How are you?"

“Hi! How are you?”

It’s a simple question. Most people under normal circumstances would answer, “Fine, thank you very much. And you?” Naturally you would expect a response as, “fine, good, not bad.” A few simple words. Does not really mean much. I would often answer in the positive when I was in quiet an irritable mood. After all it is the polite thing to say.

But no more. I have not said I was fine since Tuesday, October the 2nd. 3:14 PM if I remember the time right. Not since I heard the words benign Ameloblastoma Tumor. Amelo what? Tumor? I have what? Ameloblastoma. I believe he said Ameloblastoma. “Sorry Doctor can you spell this for me? I need to put this all in my blog."

Naturally I rushed home from work. “He said benign. He said benign. That’s good. Not cancer.” I kept saying that to myself all the way home. When I finally got on the internet the first listing that popped up was good old Wikipedia. Figures. They describe it as a rare (lucky me) benign tumor that develops in the mandible. Yes, the doctor told me this much. I did not want to ask him too many questions while I had him on the phone as my head was going to explode just from hearing the words tumor. I had a consultation with him scheduled in a few days.

But how does this happen? Did I not brush my teeth enough? Is this a gum disease that the dentist never mentioned? Upon reading what I could find on the internet I got scared. Deep breath. Just wait till you see that doctor. He will answer all your questions... Or maybe not.


pdurant said...

Hi, I'm sorry you have this....but I know a place you can obtain a ton of information from fellow sufferers and others familiar with the disease. There is a yahoo ameloblastoma support group - here

You can read the archives and get a lot of information - some of which is very reassuring and some of which is frightening. The most important thing is to get appropriate treatment as, although it is usually benign, ameloblastomas have a very high recurrence rate unless all tumor cells are removed.

My son had an even rarer ameloblastoma tumor of the maxilla (only 1% of jaw tumors are ameloblastomas and only 1 in 10 occur in the maxilla - most occur in the mandible as you already know.)

My son was diagnosed 4 years ago when he was 18 years old, had surgery and just had a second jaw reconstructive surgery in August.

If you have questions, you can post to the group - where there are lots of knowledgeable folks who have been through what you are now facing. God bless -

val said...

Hi I am a fellow female Amelo sufferer and know how you are feeling now. I have had surgery in Feb 2006 and am still having on going treatment, if you feel you would like to talk to someone who has been through this then i will give you my personnal email address

Smeagol Cat said...

Pdurant, I am so sorry for your son. He he doing ok? I did in fact join the support group. I have loads of questions and its good to have a community of people to ask f or help.

Val I would love to share emails with you. Are you a member of the support group too?

anita said...

I have Ameloblastoma and therefore underwent surgery #1 in July 2009. I have been waiting for surgery #2 and would like to talk to someone who has finished all the surgeries. I have questions on preparations, healings and so on. Please let me know if someone out there would like to help me. I underwent so far a composite resection, mandibulectomy with left fibula free flap reconstruction, tracheotomy, and neck dissection.

ana said...

I am sad that most the procedure of most doctors are cutting of the jaw bone and reconstructive surgery. That's why I am sharing this.

Hi my son had ameloblastoma when he was 5 years old. All doctors (we practically search from almost all hospitals) in the Philippines except for one recommended surgery by removing the jaw bone and replacing it with steel. We refused because he is too young and will grow up with severely deformed face. We found this doctor named DR Roberto Pangan. Maybe he is the only oral maxillofacial in the Philippines who is both a dentist and EENT at the same time. His procedure is oral, no cut from outside of the face and does not remove the jaw bone. My son is now 10 years old with no recurrence. His jaw bone has grown again to its normal size.

ana said...

I am sad that the procedure of most doctors is to remove the jaw bone and replace it with steel. That’s why I am sharing this.

My son had ameloblastoma when he was 5 years old. It was already so big when it was discovered. We practically went to almost all hospitals in Manila, Philippines. All doctors except for one recommended removal of his jaw bone and replacing it with steel. Other doctors also would remove a bone from his hip to replace the jaw. We refused because he was so young so he would grow up with severely damaged face and even possibly limp because of the bone that will be removed from his hip.
Through prayers and research we found Dr. Roberto Pangan, an oral maxillofacial ( a dentist and EENT at the same time). He removed the tumor orally so there was no cut on the face and to top it all without cutting/removing the jaw bone.
My son is now 10 years old with no recurrence of the tumor. His jaw bone has grown to its normal size. My son is so grateful to God and Dr. Pangan otherwise he would have grown with a severely damaged face and very low self-esteem.

Наталия Владимировна said...
This comment has been removed by the author.
Наталия Владимировна said...

the Yahoo ameloblastoma group is really supportive, I found lots of useful information there. Here is my story: