It seems so strange to me that doctors are not emphasizing stretching exercises. It seems that would be a must in the instructions given following this type of surgery. Yes, my oncologist does want me to do the exercises, he was the first one to get right on this, otherwise I might have been one of those not able to get the obturator out! By the time I saw him it was getting to that point and I was in panic! He delayed my radiation by two weeks so that I could get it open far enough for a tongue guard during radiation. I'm with you about how rare this type of surgery is, I couldn't find anyone else on here with similar issues. Just out of interest did either one of you have any previous thyroid diagnosis or treatment?

No - no thryoid issues here. This definitely is a rarer location for OC -- the fact that there are only three of us on here who have had it certainly indicates that. I'm just glad I decided to see a periodontist when I did! He was the one who did the biopsy.

About the stretching exercises...Yes, it is odd that the doctors don't emphasize them more, considering how crucial they are to future health and success in so many ways. My prosthodontist was the only one to really push me on them, and I'm thankful he did.

You're almost DONE with radiation, Sharon -- yay! It'll probably get harder now before it gets easier, so hang in there for the next couple of weeks or so.

You are so right about it getting harder before it gets easier! I am on day four since last radiation treatment and is as much pain, if not more. I actually had to go back to the "good" pain medication at night. I am anxiously waiting to have a noticable decrease in pain, and feel that I can begin to eat a few more foods. One of my worst pain episodes is in the morning when I first put the obturator in. I am not sure what is causing this. I can't swallow, or talk and for about 15 minutes I experience severe pain, then it subsides to a more tolerated level.

Hi, Sharon -

Sorry to hear about your pain -- I remember it acutely, still. I hope it subsides soon for you...

Are you sleeping without your obturator in? Is that maybe why it is hurting so much in the morning? If this is the case, you might try sleeping with it in -- that way, your surgical site (and radiation site) won't expand down while you're sleeping. My prosthodontist has said from the beginning that until later in the game (after all healing has occurred), I MUST sleep with the obturator in. He recommended "resting" with it out for 1-2 hours after each meal, but leaving it in at night. This is the routine I am still following. During and after radiation, it did indeed hurt to put it in after rest periods/cleaning, so that's normal, but it sounds like you are in a whole lot more pain than that in the mornings. So I would recommend sleeping with it in (check with your prosthodontist if you are unsure).

Good luck with everything -- heal up well and don't be afraid to use those pain meds until you don't need them anymore. I will be thinking of you!

That is really interesting. My prosthodontist had told me to sleep with it out at night, so that is what I have been doing ever since the week after surgery, when they removed the screws. It does seem like such a relief at night to take it out, and I sleep fairly well, but boy do I dread having to go through that every morning. I think I will give it a try and keep it in all night and see how I sleep. Any word when they will start fitting you with the permanent obturator?

Yes - I'm going to be fitted in November. That'll make it about six months after my surgery that I actually get the permanent one, assuming it takes a couple of weeks to make it. I'm ready!

It is interesting how the different prosthodontists have different recommendations re sleeping with it. I hope it makes the morning easier for you!

Hey, Sharon -- How're things going? Just thinking about you in these post-radiation days.

You girls are doing so great. I know that there are other people on this forum...not a lot, but more than just us three.....who have obturators for palatal surgery. I am wondering why y'all had radiation recommended and I didn't. I've always worried about that, but so far, so good. I was advised to sleep without my obt., to give the tissues and my supporting teeth a rest, but yes, it makes it harder to put it in in the morning, and I would agree with MM that you should ask if you can sleep in it for a few nights ....or every other night....They don't want to fit you for a permanent obturator until your tissues are completely healed and have stopped changing. The fitting process is pretty complicated, and it takes several weeks to get the appliance completed, since it generally has to be sent to several different labs for completion.

Keep up the stretching......you'll be glad you did!....and ask if you can sleep in your obt. if you do take it out some other time during the day,

XO--Colleen

You asked about prior thyroid involvement....that's a question none of my treatment persons has asked me, but one that I plan to bring up. When I was a child, I received radiation "treatments" to my neck for chronic swollen glands. Of course, this was not a scientifically proven treatment, and I'm certain that the area was quite broad. In 1985, my mother read an article which stated that those persons receiving such treatments should have a radioactive scan to detect any tumors the radiation might have caused. I did this, and it did show a tumor, but it couldn't be ascertained whether or not it was malignant, so I had half of my thyroid removed. It was not malignant....but I wonder if that extra radiation to the head could have had any causative effect on my developing cancer. It was likely too early in my life, but who knows?? They say that early sunburns can be responsible for adult skin cancers....I smoked some 37 years before my dx, but I had no other risk factors, and I am HPV negative....so we don't really know what caused my OC. XO

Colleen, radiation was recommended for me because the cancer had invaded the nerves behind the surgical site. The chemo was then added to boost the radiation. Your surgery must have gotten all the cancer, so you didn't need radiation. (My CCC team had originally said no radiation needed, but then the path report came back post-surgery with cancer in the nerves).

Yes, there must be more of us out there, wouldn't you think?? I know my prosthodontist has plenty of patients with obturators...

Your thyroid story is interesting. I wonder if there is a connection...