I hope I'm not unwelcome here. My 19 year old son has a benign jaw tumor -- osteoblastoma. It is very, very rare. A bone tumor in his lower left jaw...

The oral surgeons have pulled all of his lower left teeth (5 in all) and plan to remove the left lower jaw along with a wide margin as this type of tumor has a 20% recurrence.

We have an appointment (pre-op) 5/2. They haven't really told us much except they will take a bone graft from his hip and have ordered a titanium plate custom made from his CT scan. They plan to give him implants (but no details as to whether that is happening as part of the surgery or not).

Surgery is 5/8. He was diagnosed in February.

He is being treated by the oral surgeons at the University of Florida Dental College (the professors and head of the department).

What to expect? I'm guessing 8 hours or more surgery...

Will he be in the hospital a day? Days? Weeks?

Will he be able to talk? (They have said they are going to try to do this from inside his mouth, but if they need to they'll go in through the neck)...

Will he have a trach? A feeding tube?

I'm "mom" and I'm scared to death. I'd like to know what to ask the doctors -- they said they only see 1 - 3 osteoblastomas a year (which means no one else in the state sees them at all -- this tumor is less than 1% of bone tumors and of that less than 1% of the 1% are in the jaw)...

Any information, thoughts, wisdom (what to ask?) advice -- anything at all -- gratefully appreciated. Thank you.

Welcome to the Oral Cancer Foundations online message board! Our group is made up of oral cancer (OC) patients/survivors and caregivers. We have experience with oral cancer, its often barbaric treatments and the very long recovery from it. As a mother I feel so sorry you and your son are going thru so much. Ive been thru some serious health concerns with my children and it can be very frightening. Im sorry but I can not remember any of our members posting about osteoblastoma in the past 12 years Ive been part of this organization. I have read every single post that has been written in that 12 years and even doing a search of all out posts going back over 20 years there isnt anything here about osteoblastoma. Your son is having a mandibulectomy which many have had here, myself included. The mandibulectomy is probably what led you to our site. The procedure you described sounds similar to what OC patients have but being your son has a different disease Im sure there are major differences that we (as non-medical professionals) would not know anything about.

At OCF, we always try to help everyone and hate to turn anyone who needs help away. Unfortunately your sons condition is not cancer which is what our members have and know about. You can read thru posts here and on our main OCF site but what you are reading is about cancer treatments not for what your son has going on. I honestly feel you would find more info someplace that deals with osteoblastoma. The best thing I can do to help is to advise you prior to any major surgery to get at least one second opinion from a different treatment center. This is important, even more-so when talking about rare diseases. I do not know or recommend any one specific treatment facility, especially about a non-cancerous disease Im not familiar with. There are many websites that have specific criteria they rate the facilities on and each has their own rating system. What treatment facilities are top-notch for oral cancer may not be the best for other diseases. We wouldnt know what places or doctors were best for your sons rare illness. Our members are told to find the very best medical care they can and go with it.
This should also be the same for any other disease. This frequently is out of state facilities for OC patients to get treated by the country's top doctors.. You may need to travel to find more experienced specialists. I suggest finding specialists who do surgeries like what your son needs several times a month instead of only a random patient a couple times a year. Experience does make a difference!!! At least it does for OC patients.

Wishing you and your son all the very best., Im sorry we arent able to help you with your sons condition. Good luck!!!

I used to be on faculty at a dental school. my specialty is orthodontics so i know a little about jaw surgery but not about osteoblastoma. My question is whether this is more than a dental team is educated to handle. Correct me if I am wrong. Our oral surgeons resectioned jaws, extracted teeth etc. Implants will not be done at this time. Bone has to heal 6-8 weeks at least in order to put implant into bone.

Are they wiring his jaw to hold it into place while the bone fuses? if so, a liquid diet will be required, actually it probably will be regardless. Are they using a splint to hold his jaw in place? We had patients put a burger in a blender and drink it through a straw....the things you do when you are hungry!

Best wishes, I will be watching this thread as it is kind of up my alley.

Thank you so much for a thoughtful post. Osteoblastoma of the jaw are very, very rare. Less than 1% of bone tumors are osteoblastoma - and most are in the spine or leg. Less than 1% of the 1% are in the jaw.

So finding information (other than some medical reports) has been like finding hen's teeth. Which is why I was drawn to your forum...

I realize my son does not have cancer and am very grateful for that... I have read many of the posts on this board about mandibulectomies and it is scary as hell. This board has been helpful, and I hesitated to post since DS doesn't have cancer, and really appreciate your taking so much effort to respond to me. Thank you.

This is the one dental college in the state and when I contacted the lead oral surgeon at the Mayo Clinic he said their plan sounds correct and that they are an excellent resource. Osteoblastoma of the jaw are very, very rare -- very few cases of osteoblastomas occurring in the jaws have been reported in the literature. Thus 1 - 3 cases a year is actually a HIGH number for any facility (as strange as that may sound).

I guess I was hoping to find out more about what might be done surgically and how long he might be hospitalized. Apparently there is a new procedure called "jaw in a day" surgery (which I actually found out about HERE). They even put in temporary implants! I doubt that is being done for my son -- but the fact that he hasn't had radiation or chemo should mean easier healing...

Thank you for your support -- I feel a bit guilty for writing since he doesn't have cancer, but really need support (emotional) and do feel that you've given me that.

Even though this isn't 'cancer,' it still sounds like an extensive ordeal that you both have to endure. So sorry for you both having to go through this and I hope for a speedy recovery for him!

Thank you so much.