hi all

well today marks one week since surgery (upper right maxillectomy). i think for the most part i am doing pretty good ... got out of the hospital on tuesday and today i went down to 1 oxycodone every 4 hrs instead of 3 and will take 2 for bedtime dose.... pain is minimal now as long as i am not trying to do a talking marathon....

yesterday i went for first post op checkup - they removed the packing and modified the prosthetic .... was a weird experience but not near as bad as i had imagined... only had one real ouch moment and it was quite bearable. they said everything looks like it is healing well and looks good.

however .....

there is one part really bothering me and i am hoping someone can help me .... in the palate portion of the surgery site the prosthetic is not covering the hole ... it covers part of it but with prosthetic in i see a large hole still and it looks quite mucousy (sorry) and tissue looks sore around the edges.... i had not had the gutts to look in there until today but looked because i was having such a hard time when eating and talking so went to the mirror. (and yes it remained the same after removing it and putting it back in so it was not just out of position)


i thought they cover the surgery site so you can eat??? I have not ate anything more than pudding since surgery and would really like to but i dont want to get food in that hole that doesnt seem like a good thing to do....

tomorrow i am going to have a rest day .... going to take out the prosthetic clean everything up real nicely and then stay in my room and relax and watch tv and stuff .... my daughter is giving me heck cuz i havent rested much since i got home ... i feel bad if i am not up and at em ... but i do agree a day of rest for it would be good - dr suggested this yesterday and when i had it out today it felt sooooo good i thought ok ... tomorrow i declare as mouth rest lol

but i do need to know - is that hole normal or a sign i need a modification?

speech sounds a bit nasally and eating is very tough ... ok impossible ... but i am a pro at squirming that dang pudding around to get it where it needs to be quickly lol and when this is all over i will probably never look at vanilla pudding again LOL

thanks in advance for any input ... i am trying to be a good patient but dont feel i am eating or drinking near enough to keep me going with this going on... and dont want to get run down, i want to heal!

hugs to all - have a great weekend
Rita

Rita,

You appear to be doing remarkably well for one week out.

Healing takes time and it is normal to see some mucus and as the surgical site heals the tissues will shrink. Since you were just at the dentist's office yesterday, I will make the assumption that what you are seeing is not a sign of infection. When is your next appointment?

Your obturator will need adjustments as the healing process takes place. Once the healing is finished, I'm sure that the dentist will add plastic (acrylic) to the obturator and it will fully cover the hole.

I didn't eat anything for 10 days after my surgery, lost 15 pounds in that time period and ate very little for at least a week after that. Rest is important. surgery kicks the cr** out of you and you need to take it easy.

Feel better.

Jerry

Thanks, Jerry

No, doesn't seem to be infection or anything ... and he added some soft plastic to it on Thursday and trimmed some off the palate and thinned that a bit too ... I just thought the surgery site was to all be covered - .... which is why I am still unclear ...

Do I eat anyway? with the hole there? Do you just ignore it or do you make sure nothing gets by it? or do i just get my meds down and forget eating for now like I am currently doing ... I am such at a loss ... They told me to go home as eat as I could and well, I just don't feel like I can with this gaping hole in my mouth .... if something goes in there where does it lead? the nose? the lungs? man, I don't know ... These are the things I wished they explained and they just don't.


Thanks for any input
Rita

You are doing reallg good for it being this close to surgery. Keep up the good work.

Call your doc's office up and ask the questions -- They should have already told you, and it's something I'd surely want to know, were I you.

Pete is right. You should really ask the dentist to give you more specific advice.

I know that Colleen and you have been in contact a great deal and you should drop her an email as she sometimes stays away from the forum for several days. As you know already, she is the expert in many things, especially obturators.

Jerry

PS Until you get the word from the dentist, try to avoid letting anything alive get near your mouth -- You'd probably have a hard time getting a mouse or goldfish to move out if one took up residence in there!

Hi Azcallin,

My father is going through a similar thing. He had part of his soft palate removed along with all but 2 teeth making it very difficult to eat. After his chemo and radiation he will have prosthetic put into place along with dental implants. They will not do this until after the Rx are over.

His surgery was on June 3rd and he will not be finished with treatments until October 8th. Its been very difficult for him to eat or drink because of the hole in his palate. He cannot use a straw at all or drink from a can. If he tries, it goes up his nose. He has been living on soft foods since the surgery - anything that is chunky gets caught in the hole. He has been sticking with easy to swallow foods that he can swallow on his good side where there is no hole in the palate. For the first 2 weeks after his surgery he had a feeding tube in his nose but is eating completely on his own now. He is also drinking ensure daily to keep his caloric intake up.

Please let me know if you have any questions. I can check with my dad for you.

Rita...I have emailed you, so I won't repeat that advice here, except to say that I continue to be amazed.....and disappointed...by the lack of concern/thoroughness/professionalism in some of our medical and dental professionals. I am a physician's wife, so I am the first to defend the medical profession and through this forum I see that many dentists deserve praise as well. But from my own experience, and from those of some of our friends on this forum, the doctors and dentists are often not taking care of each patient's needs as they should.

I will use Rita as an example. There are many others, at least in patients with maxillectomies. That is the only area in which I have any experience. Why, oh why would the dr. and his recommended prosthodontist not make adjustments to the obturator to cover the opening in Rita's mouth??? If the surgery was more involved than the prosthodontist anticipated, then adjustments can be made without too much trouble. Or explanations should be given as to why those adjustments can't be made. One doesn't just send the patient along their way, leaving them to discover problems on their own and to guess at solutions.

Every surgery for this terrible disease has its own problems, and they are all difficult. BUT these professionals accepted the responsibility for our treatment, so now, darn it, do your job. Don't leave a patient with an uncovered opening without explanation! If you don't want to take the time time to talk, then hire someone to do the job of discussing this with patients, and to explain things and answer questions and to be the ombudsman.....a patient advocate....a link between the doctor and the patient.

Each surgery has its own problems. In a maxillectomy, the patient is left with a very mysterious hole in the roof of his/her mouth that makes both speaking and eating/drinking difficult. I continually hear that the patients (including myself) are not given enough information about how to anticipate this, or how to handle it..

An ob-gyn once told me that the only way he could give each patient the attention she deserved was to remind himself with each one that, though it might be his 1000th baby, it was her first one (or second....etc.....but you get the point.) EACH patient has perhaps the same questions as the one before, but it is all new to ThAT patient, and he/she deserves all of the information possible. I think that they sometimes forget that.

Enough ranting....but it hit a nerve, going back to my own treatment.

Xo--Colleen

Colleen,

I hope you feel better now.

I feel your frustration and I wonder where some of these doctors got their degrees. When I was growing up in New York, we used to say in Macy's Bargain Basement.

The stories I read here are a poor reflection on the medical and dental professions. I now know why so many patients tell me how much they appreciate my taking the time to explain their treatment options to them. It surprises me since this is the way I was taught and the way I practice. I hate being the exception to the rule. Why is everybody so limited in time to do the right thing? I guess I'll never be as rich as those guys that run people through their practices, as if every minute is a ticking dollar sign.

At least I can sleep at night!!!

Now I feel better.

Jerry