New here, I was diagnosed with mucoepidermoid carcinoma- intermediate grade, had a maxillectomy on the upper left side. Had radiation last summer.
I've had my definitive obturator for about a month. Still sound pretty nasal, but my enunciation is improved. I am having some trouble with shifting teeth affecting the fit. I have yet to actually meet anyone else with one of these. Feel pretty alone in this.

Michelle
Age 42 (diagnosed 41)
Mucoepidermoid carcinoma of minor salivary gland- Intermediate grade
Maxillectomy 4/26/10
3 molars removed
IMRT x 30 completed 7/26/10
Obturator
Most recent PET 1/7/11- clean
Non-smoker, non-drinker

There are a few people here who have them- I'm not one but wanted to welcome you! I'm sure everyone else will be a long to do the same and those that have them will jump in too - glad you are doing okay! Take care.

Welcome to OCF. You will find lots of support here to help you with your situation. If you type Obturator in the search box on the right there are many posts that come up. Im sure you will be able to find several members with similar issues.

Michelle -

You are not alone! I have had an obturator for almost two years now (am in the process of having my definitive one made). I, too, have teeth that have shifted on my "good" side, making chewing difficult (the teeth don't grind well). It's a drag, but I live with it. All in all, the obturator is doing well by me -- my speech is good, swallowing is mostly good.

Ask any questions you have -- there are a few of us on here who would be more than happy to answer!

Hi
Iv had mind for 8 weeks and am doing ok, this is only my second but my speech is really good and I'm eating ok. I'm starting radio znd chemo in a few days so hoping it's going to stay like this!
There are few of us but I hsve had such support , I am so glad I found the site.
Jayne x

Hi Michelle,

You are most definitely not alone. Like Jayne, I've only had my obturator about 8 weeks so I haven't noticed any shifting yet, but I guess I'll deal with that when it comes.

I just had my interim obturator resized last week and am having the same problem with sounding very nasal. It's bothering me quite a bit so hopefully they can adjust it again next week to fix that issue.

Welcome, yes there are a few of us on here. I have my definitive obturator. Got it this past Feb. This summer I will be at the two year mark from surgery. I have not thought about shifting teeth, I guess that is something else I will have to look forwrd to. The definitive one was made a little later than my Prothodontist wanted, so maybe the teeth already had time to shift. I did have a scare a couple of weeks ago when I couldn't get it in, and when I did, I couldn't get it out. Finally forced it, and now it fits really tight and makes removing it very difficult. I really do not know what happened or what changed. People tell me that my speech is good, I have learned to eat and drink fairly well, with just some of the usual annoyances.

Sharon

Hi
Well I feel Better today since my chemo and I have had 8 rads. I felt so so bad I didn't swoosh out my obturator as I have been! The crust build up is gross! Do any of you guys get this? It feels weird and uncomfortable ! I have quite a big hole so maybe I notice it a lot more.
I'm cleaning three times a day andhoping it doesn't get too sore for my next round of chemo week after next.
Jayne xx

I'm so glad you're feeling better, Jayne! That's great to hear.

Yeah, the obturator gets pretty yucky, huh? I take mine out and wash it three times a day (mostly rinse, full wash once a day, actually).

So you're 8 treatments done - excellent! Prepare for some sores yet to come -- get Boost or Ensure or Carnation Instant Breakfast VHC (can order through Amazon) to supplement your food intake. Good luck with everything!!

Hey congrats on being 8 treatments in - it will get harder but you'll get through it...

I rinse my mouth at least three times a day and more often depending on what I have eaten. I have found several things, if I do not immediately rinse the obturator I have a lot of trouble with my noise dripping, my mouth hurts due to a crumb being in the hole, and a major embarrassment if you sneeze. I always carry a cup and a toothbrush with me and head for the restroom after eating. I also started using a water pic at night to thoughly clean the hole. I was amazed how much "gunk" I get with the water pic that I didn't get with brushing. This was not recommended until after I finished radiation.

Sharon

If you don't have a waterpik, a simple bulb syringe works quite nicely to rinse out the surgical site (and the rest of your mouth). Use with mildly salty, warm water. These were instructions from my surgeon for after the site had healed. I would wait until after radiation, as Sharon says above, to use the bulb syringe -- it will be too uncomfortable if you have sores.

Thanks so far so good! I haven't had sores yet although I go have a sore throat. I'm trying to build myself up for more chemo but food tastes off and I have no smell or taste buds! It's hard to want to eat and then when I do it tastes horrible and I don't want it! Iv juiced carrots etc and had milkshakes and soup. I can drink orange squash too. Have you all got taste back?
I have been cleaning obturator and have picked out crusts now it's gross but has to be done! I find I'm still gagging quite a bit but it's not too sore yet and fingers crossed it won't be too bad.
Thanks for all the tips and info it really helps md with this.
Jayne x

Glad to hear things are going well!

I got my taste back after several months. Chocolate was the biggest loss! But it's now all back to normal (two years out). Keep "eating" your shakes, etc. I don't know what you have in the UK in terms of nutritional supplements, but I drank Boost or Ensure by large quantities when I was in radiation. Helped to keep my weight normal.

Good luck with the rest -- you're well on your way!

My taste is slowly starting to come back too - 5 weeks ago today was my last treatment. It takes time but it will happen. Congrats Chris!!!! 2 years awesome!

I think when you don't have your palate, taste is always effected some, but I think you eventually get use to the "new normal" and you find new favorites. I love my milkshakes and still like to end the day with one!

Sharon

Yes apparently there are taste buds on you palate! Glad you are enjoying you new normal!

Yeah, there's something about having a palate that means better tasting ability. I think it enables you to move the food around your tongue better or something. Sharon, I too still have a smoothie almost every day -- it's my "comfort food!"

Hi Michelle,
I'm Sharon. Had my surgery in January of this year. On my first opturator with teeth.lol I speak for nasal most the time. But when I go in for an adjustment it's much better and then by the time I go back i'm nasal again. That just means it needs an adjustment. Just be sure and tell your dentist about if there is pain or any problems. This is your permanent one you have? I wish you luck and it will be fine. Just one day at a time.

I've had trouble finding anything I want to eat. I don't feel like cooking anything and nothing appeals usually. I do still love my cheese sticks even though i have to flatten em to eat em. lol Taste the same which not everything does. I used to love peanut butter and toast and now I don't like the taste. I'm hoping at a later date to try again and it be what I call normal.
I think i'm going to try the water pik. I was having trouble with build up. The doctor said if there is a bad odor you smell in your nose that means it's built up. Well I tried what they told me to do to get it out. The green sponges on the long white stick and that didn't work and then tried the gauze on the finger which did work. Disgustingly so. Yuck! But it also bled from me cleaning it from pushing to hard i guess. I found the best thing for me that works is cutting the white stick down at least half way on the sponge so i have more control and it's been doing well. But it is a constant battle. But worth it. So glad my friend sent me this link.

Hi, Sharon-

You could also try a bulb syringe for rinsing -- squirt it right up there in your surgical site (gently) and lots of stuff should come out. That's what I was told to do from the very beginning, and I do it religiously one or two times a day now. Salty warm water works best. The bulb syringe at least keeps you from poking too hard up there with a stick.

Sharon,
Has your doctor suggested rinsing with a salt and baking soda rinse? I did this for along time, prior to beginning to use the water pick. I usally would rinse with this solution and let it run out my nose and would cover each nostril and blow out until I would get it to run clear.

Sharon

Sharon,

My partner just had surgery 10 days ago and is facing the exact issues with cleaning that you are. (Your post is almost word-for-word what he said to me in asking me to look on the forum for advice.) Please let me know if you come up with anything else.

Thanks,

Danny

I am new here. I had an inferior maxillectomy and neck dissection on 8/16/2010. I have an interim obturator now but will be getting a definitive one very soon. I have not met anyone that wears one. I still have problems with it irritating my mouth and hurting. It is better after some of the alignments than others, but never has it been as good as I had expected. It has been almost 3 weeks since my last one and I have leakage, my speech is not very good, my bite is off, and there is irritation.

Should I expect the same with the definite obturator as with the interim one?

Linda