I am grateful that I found this site. I was diagnosed with having Ameloblastoma in my lower jaw back in December. I was pregnant at the time and I still am with 6 weeks left to go. They want to wait until the baby is born before they proceed with surgery. Finding out about this was the scariest thing that I have ever been faced with. I am 27 years old and have a 5 year old little boy and a little girl on the way. As soon as she is born, I will undergo treatment to have my lower jaw removed along with the teeth and replaced with a bone from my leg. We dont have signs of any cancer in our family, so this is all new to my family as well. I am looking forward to being able to connect with people that are either going through the same thing or have undergone similar experiences.

Hi Julie,

I am new to all this myself and have surgery coming up on the 21st but you have definetly found a great place. In the short time I have been coming here everyone has been extremely supportive and helpful.

Tommy

Julie,

Did your doctor tell you if your Ameloblastoma is malignant? Hopefully it is not. Either way, the procedure you are facing is common here in the Oral Cancer world and there are a number of members on this site that have had the same procedure you are about to have.

You should be able to get some great advise here. The good thing is you are getting the advise before the surgery, which should be very helpful.

Julie, welcome to OCF. Im sorry to read of what you are going thru. Being a new mom is a tough enough job. Congrats on your upcoming baby. Is your surgery already scheduled? Do you know how much is being removed? My jaw was made of steel instead of using my leg bone. Since you are currently pregnant, I would think you are in your 20s or 30s, the younger you are, the easier it will be to bounce back.

I read some info about your type of disease from Wikipedia.... While these tumors are rarely malignant or metastatic (that is, they rarely spread to other parts of the body), and progress slowly, the resulting lesions can cause severe abnormalities of the face and jaw. Additionally, because abnormal cell growth easily infiltrates and destroys surrounding bony tissues, wide surgical excision is required to treat this disorder.

I have undergone a similar surgery last year for having SCC that was in my jawbone. This operation seems to be becoming more popular, over the last 6 months there have been several other OCF members with similar operations.

You probably will have a feeding tube and a temporary trach. If you can upfront ask your doc for a posse-muir type trach, you may be able to talk with it in. Im not exactly sure of the spelling. I was informed by another member to request this and it worked for me. The trach was a very short lived item.

Please ask questions. There are several active OCF members who have gone thru this. While it isnt a walk in the park, it can be done. Eat what you are able to now. It may take a few weeks til you are able to resume your normal eating habits.

Best of luck with everything.

I read where you said your teeth will come out. Eat everything and anything to put on weight. Drink plenty of fluids and be sure to drink a lot of water. You will lose weight and it doesn't take longbefore you wonder where it went. Try fo around 4000 calories daily and more if you can. I lost 70 lbs mainly because of them taking my teeth and can't seem to put any back on. Eat and keep a positive attitude going thru this with you. It helps or at least I still can laugh at myself and enjoy the life I have now. Good luck and post when the baby arrives.

The Passy-Muir Valve (PMV) is separate from the trach tube; it slips onto the end or you can take it off. Makes a big difference when talking because you don't have to put a finger on the end of the trach tube to block it off. Charm told me about it.

Julie,

My husband, Clark, had jaw reconstruction surgery last November during which a fibular graft was used to replace the jaw bone that had died. He had osteoradionecrosis. It is not uncommon to have this following radiation to the jaw. His initial DX was SCC of the right mandible.

Two surgeons did the procedure, an Oral/Max and a Plastic. It was a challenging surgery but Clark got through it. He had some discomfort in his leg where they harvested the fibular graft and free flap. He also has a titanium bar that is the "skeleton" for the bone graft. It goes from his ear to around his chin. No one can see this as it is covered by skin and muscle.

Last week he had another surgery to replace the free flap with a much larger island from his torso. The PS did the most recent surgery. He looks great and feels very good.

All of this may seem a lot to absorb now but I tell you this so that you know there are others who have gone through what you may be facing. You can do it! It has its challenges but many on this site have been there and can support you as you move forward with your surgery.

All the best as you prepare for the birth of your little girl. You are young and strong and you have much in your life to motivate you. Hang in there!

Anita

welcome to the OCF julie! wow, the road you are on is tough enough. i cannot imagine having such little ones, even a newborn during this. hopefully you will have alot of family support to help you thru. congrats on the upcoming birth of your daughter.