Marieka, I will email more answers, as I know that most here are not interested in the nitty-gritty of maxillectomies, but as for the issue of reconstruction, I don't think you have to give up on the idea. Yes, at first it would only make sense to make the best of the obturator.....and probably for several years..to be certain that they have removed all of your tumor. Even if it isn't "malignant," it might recur, due to some small molecule left behind. They can surely be more vigilant if they can look directly. My surgeon said the same thing, but at one year, he was talking about reconstruction, saying that actually, the PET scans today are so sensitive that a PET/CT would detect a recurrence before he could see it. I haven't had reconstruction, but I am seriously considering it.

It will, like Sue described, involve the use of the fibula from the lower leg, along with tissue, skin, and a blood vessel. These are installed into the mouth, with the bone forming a new maxilla, and the skin and muscle forming the roof of the mouth. The blood vessel is threaded into the neck to connect with circulation there. You don't need to know more about that now, but don't feel that you will never be able to have that done. I can't see why, at 39, anyone would tell you that you couldn't eventually have that.

In the meantime, I have spoken with a specialist in prosthodontics at Baylor Dental School in Dallas about ways to secure an obturator in the absence of the maxilla and palate, though I have not lost that much structure and am able to secure mine with my remaining teeth. He told me (and showed me an article showing photos of someone JUST LIKE YOU who had had this done, and you can too, very soon after your surgery) that since this patient had no teeth to retain the obturator, he installed implants into the remaining bone in her sinus cavity, either the pterygoid bone or the zygoma. These implants served as clips to hold the obturator in place, and she looked great! This is something that should be able to be done as soon as you are healed.

You said something about not being able to have a soft repair....From what I've read, he's right about this. If you close the palatal opening with only skin, you will not have a way to secure the obturator, so you can't have a dental appliance.

I tell you these things, even though it is premature to discuss them, so that you'll know that there are solutions out there. Things are not as bleak as you feel now that they are. The field of prosthetics performs miracles every day in giving people back structures that they have lost.

You are correct about so many here having dealt with so very much. It is humbling. That does NOT, however, diminish your sense of loss over your own situation. I think that we all feel grief and a sense of loss over these structures we give up, and the functions we have to adapt, but I promise you that you will find blessings in this experience along the way. I won't say that it's an even trade, of course, but there will be blessings that will help you through it.

It sucks, for sure, but since you don't have malignant disease, I don't suppose that you will have radiation or chemo? Do you know if that is a possibility with your kind of tumor?

It's interesting, isn't it, how they can say that your tumor is not "malignant," when there is nothing "benign" about it!! It's bad, and it has to get out of there!! But at least you don't have to worry about it going into other vital areas. That's something to be thankful for!!

You will make some good friends here, and those who have come to care about me and my situation are now among the blessings I count. You will learn lots about yourself, and your husband, and you will find that your friends, if you let them, will do anything for you, and will be more caring than you ever could imagine......IF you let them. IF you invite them to share in your experience.

I had NO time to prepare or to worry. I knew absolutely nothing before my surgery, so I think that there must be some desirable compromise between having time to prepare and having too much time. Gather all the information you can, and at some point, after you've done all you can to choose your medical personnel carefully, the time will come for the Journey to begin, and at that time, it will be almost a relief to finally get started, .....a beginning that will be the first step in getting it over with and getting back to normal....even if that is what we on the forum call a "new normal."

You will have accommodations to make, but you will do much, much better than you think.

You don't have a choice about it, of course, so at least you don't have to struggle with that decision.

I'll email you my telephone number, and you are welcome to call if you wish.

I wish I could make this go away for you, but I can't, but I know that I can help you through it, and give you some information that I hope will calm some of your very natural fears.

I mentioned an acquaintance who had much of her maxilla and palate removed. She has had reconstruction, and you would never ever know she had had surgery....not in her appearance or her speech. It will not happen overnight, but the reality is that there will be a solution down the road for you, so never give up that hope.

I'll email tomorrow. Ask anything you wish. I'm not shy. If I can help you, it would be a blessing to me.

XO--Colleen