Diagnosed with Ameloblastoma

Posted by caw @caw, Nov 9, 2021

Reaching out to anyone else wanting to connect with others diagnosed with Ameloblastoma and the journey involved.

My background, diagnosed February 2021, segmental mandibulectomy, fibula free flap March 2021.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

@pgx

Hi, I was diagnosed by Ameloblastoma (calcifying odontogenic cyst) in my mandible at 2005. The surgeon removed the cyst in a tough operation with general anesthesia, but unfortunately recurrence has been identified in 2014! The second surgery was done (this time a local anesthesia) and my doctor told me you need to follow up your situation carefully. So, I went for panoramic dental X-ray (OPG) once in a year until 2016. Then it was every two years until now and happily it was not appeared again by now. However, since the first surgery, I had no problem in my face, neither any pain, etc. The surgeon told me if we see it comes again we do the resection operation but don't worry. The possibility is very low based on my age (I am 38 now).

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It’s amazing to me that I had no idea it was there, no pain, and it had gone all the way through my mandible. So now I’m a tad paranoid if will come back and I won’t know it.

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@colleenyoung

Welcome, @pgx. Did you, like @caw, have dental prosthetics?

@caw, do you do speech therapy?

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Yes speech therapy has been very helpful, my surgeon reminds me though that until I’m in a final prosthesis it won’t be quite as effective.

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@colleenyoung

Welcome, @pgx. Did you, like @caw, have dental prosthetics?

@caw, do you do speech therapy?

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Thank you @colleenyoung. No, I didn’t do anything after my surgeries. I know that was not right to leave it just like that (without implant for example), but so far I’m fine. Maybe in the futureI will go for a modification.
As I mentioned before, I had no problem at all. The cyst just revealed during normal dental care with OPG.
So, I did not have any speech problem either.

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@pgx

Hi, I was diagnosed by Ameloblastoma (calcifying odontogenic cyst) in my mandible at 2005. The surgeon removed the cyst in a tough operation with general anesthesia, but unfortunately recurrence has been identified in 2014! The second surgery was done (this time a local anesthesia) and my doctor told me you need to follow up your situation carefully. So, I went for panoramic dental X-ray (OPG) once in a year until 2016. Then it was every two years until now and happily it was not appeared again by now. However, since the first surgery, I had no problem in my face, neither any pain, etc. The surgeon told me if we see it comes again we do the resection operation but don't worry. The possibility is very low based on my age (I am 38 now).

Jump to this post

Welcome, @pgx. Did you, like @caw, have dental prosthetics?

@caw, do you do speech therapy?

REPLY

Hi, I was diagnosed by Ameloblastoma (calcifying odontogenic cyst) in my mandible at 2005. The surgeon removed the cyst in a tough operation with general anesthesia, but unfortunately recurrence has been identified in 2014! The second surgery was done (this time a local anesthesia) and my doctor told me you need to follow up your situation carefully. So, I went for panoramic dental X-ray (OPG) once in a year until 2016. Then it was every two years until now and happily it was not appeared again by now. However, since the first surgery, I had no problem in my face, neither any pain, etc. The surgeon told me if we see it comes again we do the resection operation but don't worry. The possibility is very low based on my age (I am 38 now).

REPLY
@amandajro

Hello @caw and welcome to Mayo Clinic Connect. You will notice that I updated the title of your post slightly and also included it in the Head & Neck Cancer group to allow for more people to find this discussion in order to make some connections.

Because this diagnosis is rare, connecting with others who can understand what you have been going through can be difficult but also so important. It is great that you have reached out to this community for support and to make connections.

While we wait for others to join in, would you mind sharing how you are doing 8-months post operation and what has been most challenging for you along this journey?

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Thank you for doing that. I can share that I am doing very well at 8 months post op. I returned to work, reduced hours at 8 weeks, and full hours no restriction at 12 weeks. I feel that my energy has returned to near baseline at the 6 month mark. My function is still reduced and I'm hopeful it will improve as time passes and as my brain adapts to the new jaw. I am still working through the prosthodontics process in hopes to regain and improve my function of eating and speaking. There have been many challenging moments along this journey. Right now I would say what seems to be challenging me the most is the length of time it takes to adapt to the new jaw and the frustration with my speaking ability, I'm hopeful this will improve as time goes on. I hope to inspire others going through this very difficulty surgery and recovery. I am grateful for Mayo Clinic and my team every day. The more I read about this surgery and diagnosis the more I appreciate how lucky I am.

REPLY

Hello @caw and welcome to Mayo Clinic Connect. You will notice that I updated the title of your post slightly and also included it in the Head & Neck Cancer group to allow for more people to find this discussion in order to make some connections.

Because this diagnosis is rare, connecting with others who can understand what you have been going through can be difficult but also so important. It is great that you have reached out to this community for support and to make connections.

While we wait for others to join in, would you mind sharing how you are doing 8-months post operation and what has been most challenging for you along this journey?

REPLY
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