Central Giant Cell Granuloma
That title is a mouth full isn't it. I remember when I was hit with the old dreaded CGCG I did a lot of googling to figure out what in the world that thing is. Several years ago I had a large, benign but fast growing tumor in my jaw. The CGCG is a rare and yet aggressive tumor that essentially is developed as a result of your immune system turning on itself. Its a bone seeking tumor so it lands primarily in the femur (our largest and thickest bone) or the face because the face is very boney in structure. I'm so glad mine was the face....the femur would have most likely resulted in the loss of my leg. God is good.
I bring this beast of a tumor up because although I conquered it several years ago I have been having some issues with the aftermath of late. As a result of my journey to have this tumor removed and then the reconstruction phase I lost 8 teeth and a lot of the structure of my jaw was shifted as a result. 8 surgeries later and I was like humpty dumpty and they got me all put back together again. It was a journey that included harvesting tissues in order to recreate gum tissue, taking bone from my hip and reconstructing my jawbone and having screws and implants placed so that I could get teeth back! (yay for solid foods!) I'm so glad to say that is in the rear view mirror. It took 4 years to get me all put back together but boy was I thankful that gifted surgeons are at the ready for such a time as that. I was blessed with a wonderful surgical team that was composed of a dentist, prosthetic surgeon and oral maxifacial surgeon. They worked well together and took me from teeth removal to dentures, screw placements and finally implants were placed.
This past year I had to have some of that work redone. It was a frustrating and difficult "build back" of me. I had the implants replaced and screws adjusted as I had been having issues with the original rebuild of my teeth. OK OK, truth be told my teeth were popping off their abutments which meant sometimes I was feeling my teeth shift (and pop up) when I eat. It was not ideal and we just had to fix it. The decisions we made to restore my teeth with implants was the best I've ever made in terms of decisions. It was not without a lot of tears, surgeries and money! I'm blessed they were able to make me look back to normal and most people would never know I had this all done...except me! I'll just never forget it.
We made the decision to rebuild my implants with the help of a new prosthetic surgeon. I'm thankful that my husband was so supportive of me as I endeavored to get this fixed. Time and many many dollars later I had new implants created and an additional approach that secured the implants much better. I feel like a million bucks now but it was not without a great deal of UGH!
Personally the dentist is the hardest doctor for me to see. I just get soooo antsy and nervous in the dental chair. I find it humorous that the Lord gave me a tumor that would put me in the dental chair every week for months and months year after year.
When we discovered this tumor and found out which type we were dealing with I found that there was not a lot of information regarding outcomes of other people. Its super rare and so there isn't a lot out there about it in terms of real life experiences. I've since been able to share my story with other people in my state who have had to face this. I was able to share my great story of being put back together. At the onset it was scary. I'm just glad to have that beast behind me. I get periodic checks to be sure it does not come back. It has a recurrence rate that is high BUT it usually comes back (if it is going to) within a few years of initial diagnosis. SO I'm in a good place now with zero recurrence to date!
God has been so good. Here is the picture of my model that was made. This shows my facial structure after the 8 lower teeth were removed. I'll be brave and share a picture of what it looks like when they are in the rebuild process. It's not for the faint of heart so feel free to look away if you get queasy! I always loved taking pictures of the process so that I can see just how far I've come! I'm a firm believer when we look back and marvel at what God has done for us we are better able to praise Him in the storms!
Me and my stereolithograph! A 3D model image of my head. Notice the brain is missing LOL Of course!
I'm gonna get really brave here. I've never put these pics out for anyone to see but hey...it's all a part of the journey! This is the set they create in order to construct the implants. 2 teeth per screw are placed. This is the creation phase of the direction and placement of the implants. WOO HOO I don't have to stay this way.
This is what it looks like as they work on the placement. They have to get each angle perfect! This whole process to recreate my implants took many office visits and hours and hours. It's fortunate I love the doctor I'm working with and we are both able to find humor in this whole ordeal. I spent a great deal of time toothless in his office and apart from the fear factor it was actually quite funny. It's how I cope!
If you are currently plagued with this bad boy of a tumor (Central Giant Cell Granuloma) and are doing a search for it please feel free to reach out. I'm always happy to encourage and support others who are facing this very devastating ordeal! There is hope for recovery and rebuilding.
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