obturator

supagama

Hello everyone!  I am brand new to this site and this is my first post so bear with me.  I was diagnosed in June/2015 with cancerr of the soft palate and also had a tumor on my luymph node.  After weighing the pros and cons of surgery versus radiation and chemo, I decided on the latter.  60 radiation treatments, and 8 chemo treatments later, I was sent home to wait for results after a 3 month PET scan. My scan came back clear of the cancer..YAY, but I now have a new lesion of some sort, and am waiting on the results of another biopsy to find out what it is.  I am still in considerable pain when trying to eat, although so far I have eluded the peg tube.  I am only on toradol for pain but find I must take 2 tablets every 4 hours instead of the recommended one tablet.  I also take morphine at bedtime.  The radiation has left me with clefts in my soft palate and everything I eat or drink goes up my nose and I have to snort it back down and try to swallow it with some water.  I never eat in public, that's for sure!  I have an appointment to be fitted with an appliance call an obturator.  I am wondering if any of you folks have any experience with this??  Although it would be wonderful to be able to eat and speak again properly, it sounds like a major reconstruction.  I would also like to know if it's normal to still be in this much pain 4 months after the end of treatment, and what sorts of meds should I be asking my oncologist about?  Thanks

joeo60

Obturator

Hi Supagama, I went the other way. I had surgery to remove a tumor in my sinus cavity, my soft palete and part of my hard palete was removed. I had the opturator put in. It is just a prosthetic palete. Once you get used to it, it's not bad. It will never be like the original but no one can tell you have a prosthetic in. You can talk, eat, swallow almost like normal. Again it is not the original and when you drink liquids and tilt your head down, the liquid will come out. I have no experience with the pain meds as I didn't take any. My cancer returned, is in-operable this time so I am in the process of 35 radiation treatments and 3 chemo infusions. 

Joe

Hondo

Hi Supagama

 

Welcome to our family here on CSN H&N, I have a hold in my soft palate about the size of a 1 ½ inch pipe. I am not able to eat or drink anything by mouth it all goes in by PEG Tube, don’t be afraid of getting one. They have been a life Saver to me, I been living with it for 3 ½ years. I travel and go where ever I want, my wife and i eat in any restaurant I want too. Hay it is life and I am alive and I don’t let anything pull me down without a fight. Next month I leave for Honduras to spend some time with my brother in his Britannica Garden, I love that place. Keep up your will to survive, you will get use to your new normal soon.

 

 

 

Tim

 

wmc

Welcome to the H&N Group

Welcome to the group, and also sorry you need to be here. It is a rough road to go down with many twists and turns. Just take one day at a time and stay ahead of the pain.

Bill

supagama

Hondo said:

Hi Supagama

 

Welcome to our family here on CSN H&N, I have a hold in my soft palate about the size of a 1 ½ inch pipe. I am not able to eat or drink anything by mouth it all goes in by PEG Tube, don’t be afraid of getting one. They have been a life Saver to me, I been living with it for 3 ½ years. I travel and go where ever I want, my wife and i eat in any restaurant I want too. Hay it is life and I am alive and I don’t let anything pull me down without a fight. Next month I leave for Honduras to spend some time with my brother in his Britannica Garden, I love that place. Keep up your will to survive, you will get use to your new normal soon.

 

 

 

Tim

 

Thanks Everyone!

Hi again Everyone!  Well I went yesterday to see about being fitted for an opturator, and my throat hurts like hell today!  All the pushing and manual manipulation of my mouth wasn't appreciated.  I can't open wide enough for them to do the measurements, etc. properly so came home with some excersices that will hopefully help.  The Dr. seemed most concerned that I wouldn't be able to use the appliance because my mouth is too dry...anyone else have a problem like that?  It would be so nice to be able to eat and enjoy food again without the snorting and choking, and especially the pain.  The fact that the opturator can even be fitted with false teeth would be a real bonus!!  I haven't been able to wear my dentures in over a year.  Well Hondo, you enjoy your trip to the Honduras..the garden sounds just lovely!  All the rest of you, a very Merry Christmas and a HEALTHY, happy New Year.

 

Wendy

supagama

joeo60 said:

Obturator

Hi Supagama, I went the other way. I had surgery to remove a tumor in my sinus cavity, my soft palete and part of my hard palete was removed. I had the opturator put in. It is just a prosthetic palete. Once you get used to it, it's not bad. It will never be like the original but no one can tell you have a prosthetic in. You can talk, eat, swallow almost like normal. Again it is not the original and when you drink liquids and tilt your head down, the liquid will come out. I have no experience with the pain meds as I didn't take any. My cancer returned, is in-operable this time so I am in the process of 35 radiation treatments and 3 chemo infusions. 

Joe

Hi

So sorry to hear that your cancer has returned, Joe.  Wanting to wish you all the best with your treatments and I'll keep you in my prayers and thoughts this holiday season.

Wendy

AndrewP16nose

my obturator

Hi Supagama.I had an obturator to fill in the detect after I lost my hard palate, 5 front teeth, upper jaw and nasal septum. I got used to it quite quickly. It was just a fancy denture and I took it in and out several times a day to keep it clean. It helped the cosmetics of my face and allowed me to eat and drink. Sometimes when drinking I'd get stuff get around the obturator and it would come out my nose but that beat the original hole. I had it in for 8 months then underwent a fibular free graft reconstruction which is a story in its own right. Andrew

littlemisskitty

My mother had one of those.

My mother had one of those. She had her upper palete removed. It took so many fittings to get it perfect but the man who makes them was a perfectionist. After mom's surgery where they bolted it into her mouth, he removed it and then was sitting there talking to it stating, "oh you poor thing. Look at what those men did to you. You were perfect and now look at you." He was sitting there cleaning it talking to it as he adjusted it. Mom thought he was talking to her until I informed her later on that it was to his little piece of metal and plastic. The piece looked interetsing. She had her put in place after surgery to help it heal. He had replaced her upper sinus with skin from her leg so he was using this piece of equipment to protect it so he could heal and also afterwards so she could appear to have teeth. Hers was different in that she had no real gum to rest upon so she couldn't ever eat with it on her side but it's actually amazing when made properly. She had crocked teeth and he made it look exactly as though it did when she had her mouth all in one piece. You couldn't even tell it was a remake. It fits in perfectly but a little tight from what she said, and it has to be removed each night like dentures but never put into denture cleaning as it might hurt it. They make the teeth match the color of your teeth so it looks natural. She loved hers when she could wear it. It really allowed her to once again smile again. I hope yours goes well for you. 

janich

pain and obturator

I don't know if it's normal, but I had surgery for oral cancer in 2014, chemo and radiation that finished in Oct. 2014, and I'm still dealing with mouth pain! Doctors can't tell me how long it will last or if/when it will go away. They said I had the highest level of mucositis ever. I was using a Fentanyl patch for pain control for over a year but became tolerant to it and it stopped working. So for almost a year now I've been on methadone, plus oxycodone as a "breakthrough med."

I got my final obturator in January 2016. I had several versions before that, and some of the time my mouth was too sore to wear the obturator. I had a feeding tube but was able to get rid of that after 19 months, also in Jan. 2016. Now I eat a soft diet of smoothies, blended food, and I can eat ice cream. I'm still seeing a swallowing therapist who is giving me exercises to help the mobility of my tongue and help me swallow better. But I'm thankful to have come this far after all I've been through.

It sounds like you've been through a lot, too. I'll pray for you, and feel free to ask me any questions that i might be able to answer based on my experience. Only those of us who have been through it know how hard it is. Mouth pain is the worst!

janich

obturator

Supagama, did you ever get an obturator? It really does help with eating, although you have to keep it clean and it's a challenge to get used to it. To me, it still feels like a foreign object in my mouth. Nevertheless, it covers the hole in my hard and soft palate and it has teeth on it to replace the 5 teeth I lost on the right upper side of my mouth. And I have a normal smile again... so I'm thankful for the obturator.

A question for anyone else who has an obturator: Have you been able to get beyond eating anything more than a soft diet? My obturator covers the roof of my mouth, and I have to clean it every time I eat anything because sturff gets stuck in it and makes it uncomfortable. I'm still dealing with some pain in my mouth, and I haven't been able to get beyond eating anything more than smoothies, mashed potatoes, and blended things.

SylMarie

janich said:

obturator

Supagama, did you ever get an obturator? It really does help with eating, although you have to keep it clean and it's a challenge to get used to it. To me, it still feels like a foreign object in my mouth. Nevertheless, it covers the hole in my hard and soft palate and it has teeth on it to replace the 5 teeth I lost on the right upper side of my mouth. And I have a normal smile again... so I'm thankful for the obturator.

A question for anyone else who has an obturator: Have you been able to get beyond eating anything more than a soft diet? My obturator covers the roof of my mouth, and I have to clean it every time I eat anything because sturff gets stuck in it and makes it uncomfortable. I'm still dealing with some pain in my mouth, and I haven't been able to get beyond eating anything more than smoothies, mashed potatoes, and blended things.

Janich, I got my surgical

Janich, I got my surgical obturator placed on June 30, 2016, during surgery. I have since had it modified twice because it needed to fit better. The hole on my maxilla has closed most of the way on its own, but I lack three molars and a canine tooth on the upper left side. For weeks, I walked around with those teeth missing and feeling very self-conscious, but my prosthodontist couldn't fit me for my next obturator or add teeth to this one because my mouth wouldn't open enough for him to take new molds.

Just this week, my mouth was able to open enough. With not enough time to make an entirely new obturator because we are leaving for my out-of-state cancer center to start treatment next week, he simply modified this one by making a mold, then sending it to the lab to tailor it to my changed mouth tissues, and they added the canine and two molars. It doesn't look great (there is a silver metal hook that hooks around the tooth next to my front tooth) and there is a separation between the tooth and the canine, where the hook comes out. However, it's an improvement. I am able to keep the food out now, and it fits better. The only thing really bothering me now is that I gag if I try to talk too much. The prosthodontist has trimmed back the part that is near the back of my mouth, but I still have some gagging issues! Maybe it's made worse by the fact that I have allergies and occasionally have post-nasal drip. Ugh!

Have you tried getting a modification to your obturator to get a better seal?

janich

obturator modifications

I'm glad you got your obturator. Mine is similar to yours in that I have a silver hook over one front tooth, but it's better than nothing. I don't have problems with gagging, and I can drink with a straw. I've been told the seal I have is as good as they can make it. They said I can use Poligrip for partials, but to me it's more mess than it's worth. It might be worth a try for you, though. One thing I found that helps with post-nasal drip is to do a nasal wash once a day. I use a squeeze bottle that's like a Neti pot but I find it easier to use.

Can you eat anything you want to now, or mostly just soft foods? I'm still dealing with some mouth pain, and soft moist foods work best. I have to clean my obturator once or twice during a meal, but I've been told that's common. Not much gets stuck on it, just enough to affect the taste so that I want to clean it before I move from soup to ice cream, for instance.

Best wishes,

Jane

SylMarie

janich said:

obturator modifications

I'm glad you got your obturator. Mine is similar to yours in that I have a silver hook over one front tooth, but it's better than nothing. I don't have problems with gagging, and I can drink with a straw. I've been told the seal I have is as good as they can make it. They said I can use Poligrip for partials, but to me it's more mess than it's worth. It might be worth a try for you, though. One thing I found that helps with post-nasal drip is to do a nasal wash once a day. I use a squeeze bottle that's like a Neti pot but I find it easier to use.

Can you eat anything you want to now, or mostly just soft foods? I'm still dealing with some mouth pain, and soft moist foods work best. I have to clean my obturator once or twice during a meal, but I've been told that's common. Not much gets stuck on it, just enough to affect the taste so that I want to clean it before I move from soup to ice cream, for instance.

Best wishes,

Jane

I have been able to eat more

I have been able to eat more than the usual soft foods lately. I'm eating rice and beans, white meat chicken if I don't cook it until it's too hard, then I cut it in small pieces before trying to chew. I also eat ground beef, with spices that my mouth can handle. Meatloaf and mashed potatos work, as does fish. I do always add a sauce. So far, I haven't even tried to eat steak. I can eat broccoli if I cook it until it is soft, and I add either a bit of butter, or olive oil and garlic, or else cheese sauce. Green beans work, with a garlic sauce. Those are just some things that I eat. Of course, I do remove and clean the obturator after every meal. It fits well enough that I don't have to clean it after each individual food. Not much food gets up there. 

Unlike you, I don't get suction, so I can't drink through a straw, but this is still my first obturator. The next will be better. This first one (placed during surgery) has just been modified and a few teeth added to give me a more normal smile. I'm looking forward to my next one, which will be a completely new one. The final ones comes a few months from now, I'm guessing.

Did you have radiation and/or chemo? If so, were you able to wear your obturator during treatments, or did it become too painful with the mouth sores, or the dry mouth? I was told by some patients that lidocaine gel helped them to insert the obturator, but I wonder if that works for most people or not.

Kim8115

Orburator during chemo and radiation

hi everyone, I'm new here but have been trying to do research about how likely it will be that I can wear my orburator during the time frame I'm having the dual chemo and radiation over the next few months. I had my surgery about a month ago and obviously like the orburator for aesthetic and speaking reasons. At first I was told over the next few months my mouth will be in too much pain and pretty much no more orburator but as I prepare to begin chemo Monday and radiation shortly after another doctor said some patients are still able to wear the orburator sometimes. obvioisly I can't wear it during the actual radiation treatment but I'm wondering on off days when I go out and about or even talking on the phone if wearing it seems like a reasonable possibility. has anyone here gone through there stint of radiation with an orburator still being a possibility or is it more reasonable to assume the pain would be too great because of the tight jaw and sores the radiation leaves behind? Also, i start erbitux on Monday if anyone has any tips or anything to share with that. Thanks to anyone reading, im super greatful to have found this board. Best wishes to all!! Kim

CivilMatt

Kim8115 said:

Orburator during chemo and radiation

hi everyone, I'm new here but have been trying to do research about how likely it will be that I can wear my orburator during the time frame I'm having the dual chemo and radiation over the next few months. I had my surgery about a month ago and obviously like the orburator for aesthetic and speaking reasons. At first I was told over the next few months my mouth will be in too much pain and pretty much no more orburator but as I prepare to begin chemo Monday and radiation shortly after another doctor said some patients are still able to wear the orburator sometimes. obvioisly I can't wear it during the actual radiation treatment but I'm wondering on off days when I go out and about or even talking on the phone if wearing it seems like a reasonable possibility. has anyone here gone through there stint of radiation with an orburator still being a possibility or is it more reasonable to assume the pain would be too great because of the tight jaw and sores the radiation leaves behind? Also, i start erbitux on Monday if anyone has any tips or anything to share with that. Thanks to anyone reading, im super greatful to have found this board. Best wishes to all!! Kim

welcome

Kim8115,

Welcome to the H&N forum, sorry that you are here.

I do not have any experience with an Obturator, but there are a few members which do.

I do know a little bit about rads & Erbitux, since they once filled my plate.  On Monday you will receive your loading dose which is used to check your reactions.  If ok, then off you go.  I got a health case of acne on my face and torso, my fingers cracked, my eyebrows and eye lashes grew and I lost a big toe nail.  It is manageable.

Radiation can be brutal, but virtually no one gets all the bad side effects.   Mainly, taste buds go on vacation, food feels and tastes weird, mouth, tongue and throat discomfort, etc..

Start drinking lots of water and swallow often.

You will do fine.

Matt

P.S.  you may want to start a new thread to get more traction and you might find some good info in the superthread.

Kim8115

CivilMatt said:

welcome

Kim8115,

Welcome to the H&N forum, sorry that you are here.

I do not have any experience with an Obturator, but there are a few members which do.

I do know a little bit about rads & Erbitux, since they once filled my plate.  On Monday you will receive your loading dose which is used to check your reactions.  If ok, then off you go.  I got a health case of acne on my face and torso, my fingers cracked, my eyebrows and eye lashes grew and I lost a big toe nail.  It is manageable.

Radiation can be brutal, but virtually no one gets all the bad side effects.   Mainly, taste buds go on vacation, food feels and tastes weird, mouth, tongue and throat discomfort, etc..

Start drinking lots of water and swallow often.

You will do fine.

Matt

P.S.  you may want to start a new thread to get more traction and you might find some good info in the superthread.

Thank you!

matt thank you so much for your reply, I really appreciate the encouragement and advice! i will start a new post to get more traction thanks for the dkrection . 

AndrewP16nose

Hi Kim. I had my obturator in

Hi Kim. I had my obturator in throughout chemo radiotherapy. It wasn't painful to take in or out unless I left it out for several hours and tissue swelled which made putting it back in tight. I found it best to leave it in as much as possible. 

 

Andrew