my husband has recently undergone an operation to remove a tumour on his upper jaw and hard palate. The free flap has failed and we have to make a quick deciaion as to whether to try again or have a removeable plate. The surgeon seems to be suggesting that the plates are not really a veru good option but the chances of the flap failing again are 50%. We were only informed of the diagnosis 6 weeks ago and we are still reeling and do not feel equipped to make this decision. does anyone know where I can get impartial advice or if they are living with a prosthesis.

Katie
I presume you are at LRI. I know free flaps do fail but my understanding was they usually fail quickly and then the best option is a flap of muscle pulled up from the chest wall with the blood supply still attached, NOW THIS INFORMATION APPLIES TO TONGUE GRAFTS AND MAY NOT BE TRUE TO A GRAFT OF THE HARD PALETTE. You could try ringing cancerbackup freephone 0808 800 1234 office hours they have trained cancer nurses on hand and their advice is very good and very practical.
E-mail me or send me a private message if you want, I will help all I can.
I don't know of anyone with a plate, but hopefully someone will post later.
Sunshine.. love and hugs
Helen

Katie,

I'm sure that August (Colleen) will be checking in here soon. She uses an obturator to close the defect in her palate. She is very knowledgable about this type of prosthesis and will be more than willing to answer your questions.

Jerry

Katie,

My father also uses an obturator to close up the area in the roof of his mouth. He had half of his maxilla and upper palate removed on 5/23.

Dad had all of his upper teeth removed during surgery. Right now the obturator is just a plate that covers the opening. He uses a powder adhesive to attach it to the roof of his mouth that is still there.

In about 5 months he will have one made that also has teeth on it and will look like a plate with dentures on it. Because his mouth is shrinking from healing from the surgery and the radiation the obturator is now not fitting properly. His mouth is too painful from the radiation to have impressions made for a new one now. In about 4 weeks he should be able to have a new one made.

No other reconstruction options were given. I wouldn't go so far to say that Dad actually "likes" his obturator, (he would much rather things be like they were prior to the cancer, but who wouldn't?) but it does make it possible for him to eat and drink without coming back out of his nose. He is able to speak without it, but some say that it aids in their speech as well.

I don't really know that much about a free flap vs. an obturator, but I hope that you find something in what I've written that helps. August has been dealing with this longer than my dad has, and she is very helpful.

Plese keep us posted.

Joy

Dear Katie, Jerry knew I would want to weigh in here. There are not many people on the forum with SCC of the maxilla and/or hard palate. Mine sounds very similar to your father's and to Joy's father's. I had not quite half of my right maxilla removed and the equivalent part of the adjacent hard palate. I still have my own teeth, including the four front incisors, exdept for the five teeth I lost with the maxillectomy.

I was very, very fortunate that I did not require radiation. My surgeon feels that his aggressive approach achieved complete removal of the cancer. I am now 20 months cancer-free.

I wear an obturator, though I have been tempted by the reconstructive surgery. I agree with Joy, that I sure would love to have my own mouth back again, but honestly, this is not much worse than having full dentures, and lots of people have those. I do have my own maxilla and teeth on the other side, and part of my palate is still exposed, so that I get some sensation there.

Of course, an obturator is dependent on remaining structures to secure it, so if too much structure had to be removed, the obturator will not be stable or functional.

The process for the use of an obturator is that as tissues heal and change, the obturator must change also, with either new appliances made from new impressions, or with relining the old appliance with moldable material, both processes being difficult, I imagine, for an irradiated mouth.

I have discussed....and seriously considered....reconstructive surgery. Here is what I know about the free-flap surgeries for our problem: If one simply closes the opening with a graft of skin, the openingn is closed, which is nice, but there is no way to then secure an obturator, and the patient is actually worse off than before. The three-dimensional portion of the obturator (the "bulb") that inserts into the opening in the palate is an important part of the retention system. The more teeth a person has remaining, the better luck he will have with an obturator.

The surgery that was suggested for me was the harvest of the fibula (the smaller of the two bones in the lower leg) along with muscle, skin, and blood vessels. All would be installed into the mouth, with the bone serving as a maxillary replacement, and the skin and muscle serving as a tough covering for the palatal opening. The blood vessels would be connected to vessels in the neck.

The failure rate of some part of this process, I was told, is around 10-15%.

There is a long healing period. The bone must heal for about 6 months. Then some implants can be installed,but they must ossify for about 6 months before they can bear any load. In the meantime, one can wear some sort of appliance that is wired in, for appearance's sake. The implants are not for the permanent installation of teeth but to be secure attatchments for a dental appliance that is more like a bridge. The palate, with the grafted portion, would no longer be covered by a plate of any sort.

I was very tempted by this surgery, exc. that I am now 64, and this is a stressful time for my family for other reasons, and I did not feel that such a long time of healing was the way I should be spending my time right now.

My surgeon said that he could go either way.....that I have such a good result with my obturator that perhaps I should just stay with it. He said that this large surgery is primarily for those who can't get good results with an obturator.

My advice.....based only on my own experience: There is no time frame that necessitates your doing another surgery at this time. It can be done later, after all healing has been accomplished. You might want it then, or you might be quite satisfied with the obturator. Nothing will be lost by waiting.

One other option for securing an obturator is implants farther up into the bony structure of the face, either into the pterygoid process near the jaw joint, or into the zygoma (the cheekbone.) These implants are said to offer firm support for an obturator, especially when there are not enough remaining teeth to provide satisfactory support for the appliance.

Have I throughly confused you? Please let me know and don't hesitate to ask more questions.

One question I have is how many teeth does your father have left after his surgery? If he has enough teeth to support an obturator, I would think twice about allowing the doctors to close the opening without discussing how he will secure a denture appliance.

I wish I could snap my fingers and be all fixed up....don't we all....but the reconstructive surgery is a really big deal, and I just can't do it to my family right now.

Here is another thing to consider: If you don't close up the opening in your palate, the dr. can visually inspect the area for the next year to be certain that all is well, rather than closing it up.

Also....after going through all the surgery..and the failure...that you have experienced, I can't imagine subjecting you to more surgery right now. I would let this heal, get a temporary obturator, and learn to use it.

I talk, sing, eat corn on the cob and McDonald's hamburgers....I don't chew on that side, but most people are one-sided chewers anyway, I'm told. Of course, I am fortunate to have my incisors........makes a huge difference. My teeth look totally normal to the casual observer.

I am considering having my teeth crowned to install a better clip on the backside of those front teeth. The tension on the lateral incisor, which has a small wire around it to hold that side of the appliance, is not a strong tooth, having a single root. I hate to get my teeth crowned, but compared to what some of my friends here have undergone, I can't complain about crowns!

Your lower teeth need something to "oppose" them, even if you don't chew on them. The fake teeth on the obturator provide this.

I had fake teeth in my obturator nearly from the beginning. Improving our appearance improves our outlook. Ask about teeth. There is no reason you can't have fake teeth in your obturator, at any stage, exc. perhaps immediately after surgery.

Ask me some questions. I seldom get to write about my experiences, and I am glad to help. It makes me realize how lucky I am and how far I have come since those first terrible days.

Katie-don't let them pull any teeth unless absolutely necessary!! Every tooth you have increases the success of the obturator.

Joy, I don't know how your dad is managing with the plate just affixed to his palate with adhesive. I sometimes use a cream that comes in a tube (Fixodent Complete.) My admiration goes out to him! What a trooper!

Y'all write me with questions. I love to feel useful!

Hey Colleen,
Not to get this thread off track, but my brother and his wife live in Lousiana, New Orleans to be exact. Katrina set them back a bit but they are doing great now. What part do you live in? My brother is here with me now, he dropped his life and came when I was re-diagnosed. Big brothers are definitly a plus!

Love,
Minnie

Minnie....just a word to tell you how very much I am enjoying your webpage, especially the pictures of your gorgeous girls!

I live in Alexandria, in the center of the state. I lived in N.O. for nearly 10 years during college and my husband's medical schooling. One son did his medical training at LSU in N.O., finishing the year before Katrina, and another son is a practicing orthopaedist in Mandeville, on the north shore of Lake Ponchartrain.

We have four sons...no daughters. You can see why I am so fascinated by your gaggle of girls! (Two of mine are still un-married....great catches!)

Where in N.O. does your brother live? I don't know what people do without family to see them through these crises! You are a lucky girl, for sure!

My area of LA has benefitted from Katrina in having a number of really great people settle here who just couldn't get going again after the storm. Several, even now, still intend to go back. N.O. gets into your blood, for sure. All of Louisiana felt the storm and we all feel some ownership of N.O. and great sadness for its misfortune. It's coming back, though many of its traditions and landmarks will never be the same. It's still a magnificent, fascinating place.

Hi Colleen!

Dad does pretty well with the way the obturator is affixed to whats left of the roof of his mouth. Unfortunately there has been so much shrinkage since the last obturator was made that it is now too big for his mouth, which does cause some problems.

Dad finished up radiation a week ago today and he did great, only developing those nasty side effects during the last week of treatment. He would like to have a better fitting obturator now, however his mouth is so sore he doesn't feel like he could endure having an impression of his mouth made at this time.

He has always been one to enjoy his coffee in the mornings, and of course the warmth of the coffee tends to loosen the adhesive, so he has his coffee without the obturator, which means that some does come back out his nose.

Dad hopes to have his teeth by Christmas, but he has been told that they will be mostly for cosmetic purposes because of the amount of bone and palate that was removed and the fact that he no longer has any of his own upper teeth.

Since Dad was diagnosed with oral cancer his two older brothers have also been diagnosed with cancer - one has prostate and bladder cancer and the other has just prostate cancer. His father and two younger brothers died of lung cancer in their 50's but they were smokers. The oldest brother that has both bladder and prostate cancer has been told that his is a rapidly growing type. Not good.

All in all Dad is doing great! It's hard to believe that we brought him home from the hospital just 3 months ago. In some ways it seems like it was such a long time ago. It just goes to show that things seem pretty dark at times, but you will get thru it.

Hugs,

Joy