My son has a rare tumour (Juvenile ossifying fibroma) any1 else know anyone with this

My son had a swollen cheek in 2010 when i went to the docs they felt he could have fractured his cheek bone but then xrays showed a mass in his cheek bigger than a golf ball and after a biopsy he was diagnosed with a very rare but aggressive benign tumour called an Ossifying Fibroma. He had it removed but within a year it grew back. He has now just had a massive op to remove the tumour again this time loosing half his top jaw and teeth on that side. The samples have now gone for a 3rd opinion but there is a chance it may be in his other teeth that are left or his cheek bone. It also has a high reoccurance rate apparently until he is an adult so cannot have his jaw rebuilt.

I have looked online and cannot find anything.

He is under GOSH but they do not seem to give us much info as apparently it is rare and "not a sexy subject" so the consultant said no one has researched this.

I would like to know if anyone else has come across this?

How has this affected others?

Hi Lyndsay,

I am also a victim of Ossifying Fibroma. I was first diagnosed when i was 18 and i had it scooped out and had 5 year clearance after. I am now 27 and it has returned. In my own research i personally believe it may have something to do with the thyroid gland. Now i am not a doctor my extent of medicine goes i am a qualified massage therapist and have done my own research on Ossifying Fibroma. From what i have read and my experience is that when the body produces to much TSH it can produce abnormal growths. I put the pieces together as a few years back i had a very stressful moments in my life and lost 15kg in three weeks and my hormones were out, i believe this brought on my recurrence of the fibroma.

I will be undergoing surgery either next week or in a months time to have a bone graphing done and the removal of the right section of my mandible, teeth and nerve in the area that the tuma is in. There is a big recovery but it will never come back again.

I really encourage to look into alternative options and possibly look into your little one's TSH levels and see if you can find a connection with TSH and Ossifying Fibroma.

In Saying this i have also researched and experienced that getting teeth removed can also stimulate the growth, my experience in this is i believe i was not born with this ossifying fibroma yet when i was around 10 years old my teeth were all over the place and had many infant teeth pulled out as they just would not fall out. I recall my first encounter when i was young as normal before you get any teeth removed you get an X-Ray and there was always a blury spot in my image and the dentist would say "Ow you must have moved in while the x-ray was getting done" if only i knew then!. It lay dorment up until i was 18 decided to get Braces and get my wisdom teeth removed it was in that surgery that my fibroma awoke i noticed it after the swelling went down. Hench starting the first stage of getting it scooped out with them not knowing if it was Juvenile or an Adult version. (Now Knowing i have a Juvenile version in my 20's) Reason for me explaining this is that with more probing in that area it will just aggravate it even more, Your son i am assuming is still young and his mouth will change constantly, my advice to you is leave it alone but monitor it every 6 months it grows very slow but the more you cut it out the worse it could get and when it comes back it may be at the end of where it was removed so more and more bone is being damaged. Then when he is an older teenager get the whole thing out which is what i am now going to do.

I wish you all the best of luck. In my experience try to avoid going into surgery to many times and it wears your bone down to the point where it can not recover, better to do it one off and get it all out then doing it gradually.

If you need any support or need to ask me more questions i am more than happy to help you as much as i can.

P.S I am not based in England i too was looking for more information on Ossifying fibroma and came accross your post and thought i need to tell you my story.

Warm RegardsEstelle x