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

Thank you all so much for replying, I need some time to digest all of this but it does sound as if the use of a plate is perhaps not as bleak as the surgeon has suggested.

Katie,

I see that I was right about Colleen showing up. She is an expert on this subject and now I see that Joy is one, too. If it were legal, I would be offering them positions in my office. Then again, not sure if two southern girls would want to be "up north".

I hope that your husband has a quick recovery and that he is able to find a comfortable and functional solution to his situation.

Jerry

Jerry, if you could get the "Southern Gals" to come up north, they would just get you Yankees going in the right direction. Amy in the Ozarks [born and raised in southern Arkansas]

Amy, you are sooooooooo right about us Southern girls. I wouldn't mind going up there, but I'll bet that Joy and you and I wouldn't be coming back alone! We'd convince all those yankees just how good life can be down here! (Actually, it is now so bloomin' hot, that I wish one of our good yankee friends would invite me up there just for some relief!)(But when winter comes, y'all think of us. I don't even own a coat!)

Road Trip! Someone needs to pick me up. My doctor still says no driving. You may want to bring ear plugs with you. I've been here almost a month by myself. I might talk your ear off.

Jerry, I think this may come under the heading"Be Careful what you wish for ! Amy

Two maybe, but four, no way. Forget the offer.

It can get pretty hot up here, but there's nothing to worry about, I'm staying....I wouldn't give up the skiing.

Jerry

<pout>

I guess I'll go unpack now. :p

hmmmmmmmmmm skiing. You got me there. Is the invitation still open?? I'll pick up Joy and Amy on my way up, and we promise to be good. Joy will be all talked out by then, we promise! (Actually I DO own a coat....a ski jacket that hasn't been used in far too long!)

Sorry, Katie, we totally hi-jacked your thread. Let's get back to business. I have sent you a personal message, asking you to send me your email address. I have a good photo from a journal, which shows an obturator much like mine, and a healed mouth that is much like mine.

Again, since you asked for my opinion, I gave it. It seems that what you need to do now, depending on the extent of surgery that your husband has had, is to let him get over the trauma of the surgeries he has already had, and the trauma of the reality of his situation, and learn that he can adjust. But to go back into a surgery now seems very difficult to imagine. Of course, I don't know his situation.

How many teeth did he lose to the surgery? How many does he have remaining? How large is the opening in his palate? all of these are issues to consider when determining whether or not an obturator will be satisfactory.

Here's the best advice I can give: Ask your surgeon what prosthodontist he recommends for making obturators for his patients. Go to that person (he's a dentist who makes dentures, and other oral appliances to replace lost parts of oral structure.) and see what he says he can do for your husband. For a small fee, you will get the advice you need. Be certain that it is someone accustomed to working with cancer patients, and not just someone who makes dentures. Your surgeon probably has a practitioner that he routinely sends his cancer patients to.

If he doesn't have a suggestion, then he doesn't do enough of these surgeries to be giving you advice in the first place! Go, then, to a large university medical center or a cancer center with a good head and neck department and ask for a consultation with their prosthodontist.

Just can't keep quiet on this one,

August is correct, Jerry let me know your thoughts on this.

In my professional experience, Prosthodontists come in two categories those that do dentures and those that despise dentures.
Prosthodontists trained in the southern states and the UK ( for some reason ) in my experience have more gravitation towards providing denture treatment. More experience in maxillofacial reconstruction and obturators (palatal plates), both immediate post surgical obturators and permanent prosthesis. Dr. Robert Hoar, Dalhousie, Class of 63-64, then continued his education in the "Big Easy" for his specialty training, was our local prosthodontic maxillofacial reconstruction expert. He was a member of the Capital Health Tumor Board until he recently retired. A loss the dental and OC community felt bigtime.
He was consulted by the ENT's, plastic surgeons, oncologists and maxillofacial surgeons on most cases that may or could require prosthodontic replacement of teeth and/or oral surronding structures prior to surgery. Many times he was present during surgery to assist the surgeons in recognizing where the best surgical margins were located away from the cancer site so that an obturator would be successful.
He was a mentor extrordinaire. I was lucky to have him as a professor. He made sure that every student in my class saw, adjusted and participated in a patients treatment who had/or needed an obturator. (plate)

I'm rambling again...

My point is...If your surgeon, as August has said knows of someone, visit them, if he cannot recommend someone then start calling every prosthodontist within 100 miles of you and ask them question, ask for references.
Obturators can be very successful if constructed by a caring, understanding, skilled prosthodontist. Obturators get their sometimes poor evaluation from the experiences of patients who fell into the hands of inexperienced individuals who haven't constructed enough of them.
Not that you don't have enough on your mind already but a detail that can make you much less miserable post surgery.

Cheers,

Mike

My husband was told yesterday by his consultant (yes helen it is the LRI) that they are moving towards the obturator. no real explantion for this as they had previously told me that the decision would very much depend on the results of some bone samples they took during surgery and whether they showed any signs of cancer. This would mean he would need radio therapy and following this, the option to re-try the free flap would not be possible ever, as radiotherapy damanges the blood vessels permanently and it is a good blood supply which is the key to success. I have realised since contacting the forum how much I don't know, I am not aware of whether they have left any teeth and in fact what they have actually removed. My husband was in shock initally and was unable to discuss, and now he is recovering well I rarely see the doctors as they visit the patients outside of the visitors hours. My task now is to have a discussion with them and all your responses have at least pointed me in the direction of the right questions to ask. I am a bit nervous about the level of experience they are going to have with obturators as it is clearly not a treatment option which is not used very often by them.

Katie,

I was just wondering...
I know health care is different in different countries etc... My immediate family was allowed to be with me 24/7. Without them I would not have remembered anything. It was like being in a fishbowl...I talked with the doctors but 5 minutes later could not remember anything.
I made a policy for myself to never talk to the doctors by myself or never be alone in the hospital..it took some leg work ... but for my 14 days post surgery there were only about 10 hours without a family member. I had a note pad with questions I came up with and my family member would ask them and write the answers down. I also had them write down what the doctors said at each visit to my bed. It helped me.
You should ask if you can spend time with your husband outside of visiting hours and ask what times the doctors will be in and if able to do so be present when them come in.

I'm sure you already enquire about this but just in case I thought I would post this.

If I can be of any help or assiatance let me know and I'm sure Jerry is there for you as well.

Love and hugs to you and your family,

Mike

One thing I love about this forum is the ability to talk about the reality of these very difficult treatments.

I made a decision that I could not deal with this alone....and I made sure that my husband looked inside my mouth. One of my adult sons did also, when he took me for a checkup. It was not a pretty sight at first, and they saw it before I did....took me quite a long time to get up the courage, and then I did it when I was alone...BIG mistake! ...very upsetting.

My point is that you need to know what was done, and, for his sake, to be closer to him in his loss. If you don't even know what was taken, after six weeks, no wonder you are in a quandry about the whole thing.

You need to make someone give you an anatomy lesson, so you'll understand what was taken and what is left.

And it will bring the two of you closer. Get a small, bright flashlight, and a mirror. I use a rectangular purse-sized make-up mirror that I can get into my mouth. This is all you'll need to get a good look. For him to get a look, you'll need another mirror. I use an inexpensive shaving mirror that sits on the table. It has a magnifying side and a regular side. With the magnifying side, I can see things that are quite mysterious, since these structures are usually covered forever by the palate. I place the shaving mirror on the table, under a good light. Then I get my little flashlight, and put my little makeup mirror into my mouth, and I get a good look. I do this still to just be certain that things look ok.

Since he has just had a failed graft surgery, the area is going to appear raw and un-healed, most likely. Be prepared.

I will send you the picture I have of a final obturator. It is not mine, but mine is very similar....and a picture of a mouth that is not mine but looks similar....all healed up. The pictures are from a journal.

The obturators are changed as a person heals. The first one is usually just plate, placed at surgery. The sinus cavity above the removed palate is usually packed with antibiotic gauze, so all that is needed is a plate. When the gauze is removed a week later, then the opening needs to be filled to prevent leakage of food, liquids, and air, so the plate then is changed to an obturator, which is a plate with a three-dimensional "bulb" at the position of the opening. This upright portion helps to keep the appliance in place, and it hopefully seals the hole. If there are not enough teeth on the other side, or if the opening is too large, or if it is not prepared properly at surgery, or if the appl. is not made by a knowledgeable professional, then the chances for success diminish. I had fake teeth in this one, and they helped in opposing the lower teeth, which actually helped to hold this one in place, and they added immeasurably to my appearance and my confidence.

As the tissues heal, they change. For this reason, this intermediate obturator must change also, so every 3-4 weeks, a patient should get that appliance re-lined...soft, pliable material is spread onto the appliance, pushed into the mouth (should be relatively painless) to take the mold of the new shape of the mouth....and then it should fit better until the next re-lining.

When healing is complete, then a person may be fitted for a more permanent obturator. That is the type that I have now. It is made of metal, with an acrylic "bulb" and fake teeth set into pink "gums," much like a denture.

I'll send you the picture, though the one you would have at this point would not look like this one. However, the bulb portion would be the same, and the rest of it would be similar, but made of less permanent material, probably pink acrylic.

The "permanent" obturator does not have to be made of metal. It can also be made of pink acrylic.

But not just ANY prosthodontist is skilled at all of these considerations. The right one is one who works often with H and N cancer surgeons and does this often, likely in preference to routine dentures. They might do some denture work, but this should be their primary practice. If not, then they don't have enough experience to do a good job.

August you left me nothing to add...

That's why we love and rely on you so much.

I have a dental mirror with an led battery powered light that I was given at a trade show some years ago...I dont use it...if you want it, or no anybody who might, PM me an address and I'll send it.

Cheers,

Mike

Katie
I've just been discharged from having a 'free flap' on the 23rd. They took muscle from my upper abd and also skin. It looks like I tried to swallow a small football! Have a n/g tube and trach. Hopefully after my swallowing test on Mon will have them removed. They are what bother me the most. The doctor feels that I won't need my obturator anymore. Reconstructive surgery in the future. Hopefully no more recurrances! Can't wait to eat a BLT! If your defect is small like 'sister' Colleen's, I would personally live with the obturator. After my second surgery, my obturator was as big as an oyster shell and there were no teeth attached. This surgery has certainly knocked the wind from
my sails and I wouldn't recommend it unless there was a huge defect and there was no other choice.
Sue

Katie,

I really can't add anything significant to the suggestions and information provided by Dr. Mike and Dr. Colleen. (Colleen is now an honorary dentist after her disertation on obturators).

I will add, however, as in any profession there are those that are top notch and those that are just average. I'm sure that you have run into this whether it is your family doctor, a realtor or an attorney etc.. You do want to have someone with experience. Don't be afraid to ask to speak to patients that have been treated by the dentist.

Jerry

Jerry, I concur with you granting the title of Dentist to Dr. Colleen. We, just need to get her published.

My greatest respect to my colleagues Jerry and Colleen.

Cheers,

Mike

Katie
As next of kin, you have the right to request a meeting with a Doc to receive a full report of your husbands condition. Knowing 2 of the consultants are not very forthcoming, your may be better with one of the senior registrars, I always found I could get better answers from them. Write the questions down if needs be, and if you can take someone else with you to be an extra pair of ears.
Is he in the Kinmonth Unit? or has he been moved to a general ward? If he is still on Kinmouth find the ward sister as well and have a meeting with her.
Cannot think of anything else to add to the good advice you have been given so far.
Sunshine.. love and hugs
Helen

Jerry and Mike...You have swelled my head. Now I will be impossible to live with!

SUE!!!!! Welcome back to the forum. I know that we've emailed, but I can't tell you how happy it makes me to "hear" your voice on the forum also.

You have had a terrible time, but you have information and experiences now that will be very, very valuable to others....experience that I don't have.

You have had the exact experience that Katie has been asking about.

Welcome back. Share what you can when you feel like it.

XOXOXOXOXOXXO!!!!!!!!!

Sue,

It's great that you are back on the board. Your experience and now expertise on this subject will be helpful to many.

I will be emailing you later and hope that you are able to get the trach and tube out this week.

Feel better soon. Hope the swelling is down somewhat today.

Jerry

Dr Mike - thank you for your suggestion re: speaking to the doctors. After the first 24 hours following the operation the staff were very clear that they wanted me to stick to visiting times which I have done and consequently I have not seen a doctor for a week. I have remedied this today and am hoping for an appointment to see them tomorrow.

With regards to the prosthodontist, given in the UK that we have a national health service, you don't have a great deal of choice as to who carries out your care. I am nervous though, as it is obvious that their treatment of choice is a free flap, which must mean that their experience with obturators is limited. However all the posts have given me ideas for questions which I am preparing.

August thank you for the pictures, they weren't too scary, I can't look in my husbands mouth at the moment as they have packed it full of gauze and he can't yet open his mouth very far as it is only two weeks after surgery and he had a part of his top lip removed. I have found out that he has two back teeth remaining which is good.

Again thank you for all the replies and advice.

Katie

Helen

Sorry missed your posting. yes he is in the Kinmonth Unit, the consultants I have dealt with so far have been Ok if a little evasive. I will report when I have managed to arrange a meeting.

Katie

We had a meeting with the consultant yesterday who has made it clear now that there is no decision to make with regards to a free flap versus obturator. The histology results show that the cancer is particularly aggressive and therefore they are going to press ahead with radio therapy as soon as possible and this is the priority. As an aside it sounds like the system in the states for the making of obturators is very different to the uk. I met the person who is going to be doing this and he is a technician who makes many different types of protheses for the maxio-facial unit.
I think this ends this thread but I am so grateful for the input and support from members, I am sure I will be asking further questions.

Katie
Yes well I'm sure that that sort of decision changes everything, and I'm sure that medically that is the way forward. Sometimes it is good when you don't have to make a decision yourself that you are really not sure about.
When will the radio therapy start? and for the moment is he staying in hospital?
Oh and are you looking after yourself? (it is just as important)
Sunshine... love and hugs
Helen

Helen

Yes I am relieved not to make the decision but would rather it is not under these circumstances. My husband is about to be discharged from Kinmonth unit but may have to be an inpatient for the radio therapy. We don't know when this is going to start and are currently awaiting a visit from radiology. I am trying to look after myself but between hospital visits, ensuring my 14 year old is fed and OK and keeping the household running I am not sure what this will entail. I am also the main wage earner and I am worried as I am on sick leave at the moment but feel there is a limit to how long this can continue. One thing I have done is to contact coping with cancer who have been great and I am having counselling sessions from them. Sorry I bet you wished you hadn't asked.

Katie

Katie,
Keep on posting your concerns, questions and anything else--everyone really does want to hear--so many have been there before you and are going through this at the same time as you

Brenda

Katie
No problem, that's what we are here for. Hope the next lot of Docs are more forthcoming with information. (maybe you should start a list of questions now) Just a thought, could you ask to see a Macmillan nurse, there should be one in the hospital.
Remember to look after yourself, you are going to be the one holding all this together.
Sunshine.. love and hugs
Helen