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 group.

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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@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.

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

@caw, do you do speech therapy?

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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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@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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@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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@caw

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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@caw Don’t worry. Most of the time, recurrence would be less possible. However, we definitely need to follow it up every year or every two years.

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@pgx

@caw Don’t worry. Most of the time, recurrence would be less possible. However, we definitely need to follow it up every year or every two years.

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Yes agree, they do reassure me I would notice something and right now i'm on the every 6 months imaging, so that helps.

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My ameloblastoma tumor was successfully removed in July 2021 with a fibular free flap to harvest the bone for the resection in my upper right jaw. But I have been dealing with hyperplastic tissue growth after the temporary prosthetic was installed in October 2021, with removal procedures in January and March this year. I hope to have my permanent prosthetic installed in May, and will likely have to any hyperplastic tissue growth removed again.

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I’m a touch behind you, my defect was Bit large so it’s been a journey trying to find a design that aids speech and chew. I think we are close though. I don’t have the hyperplasia tissue growth, do they anticipate that being a regular process for you or will it settle as time passes?

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@caw

I’m a touch behind you, my defect was Bit large so it’s been a journey trying to find a design that aids speech and chew. I think we are close though. I don’t have the hyperplasia tissue growth, do they anticipate that being a regular process for you or will it settle as time passes?

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The growth started after my temporary prosthetic was installed in October, and I began to notice it (with my tongue) in December before it was removed in January. My surgeon said, after removing new growth in March, that the hyperplastic tissue was less in March when compared to January. But he did indicate he'll probably have to remove it again May, and hopefully even less growth then. I did confirm with my local (DFW) dentist that she would be able to remove it to avoid another plane trip to Rochester. I hope the growth stops at some point. At its peak, the hyperplastic tissue does effect my speech (mush mouth).

I hope you get some improvement on speech and chewing.

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