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Wednesday, April 13, 2011

Mouth Pain--Still a Mystery

I am baffled. Bob's mouth pain has pretty much disappeared. I guess that's good news, but what happened? Over the past two weeks, he has only asked for the Lidocaine ointment once and then complained that the ointment "tingles". He still opens his mouth and indicates his upper and lower gums with his finger (which he used to do) but now instead of saying "hurts" he says "gone". Not "gone" in a good way, as in the mouth pain is gone, but in a bad way, as if something in his mouth is gone. I'm thinking he means his dentures, which no longer fit.

In the hospital, they had tried to put his dentures in his mouth several times after his stroke. I remember one time vividly, because Bob looked horrible, it seemed like someone had stuck huge horse teeth in his mouth and he was terribly in pain, and when they took them out, his gums began to bleed. He had lost a lot of weight, going in for surgery he weighed 185 and coming home, he was 152. Since he's been home, he's been steadily gaining weight, so we tried the dentures again, but they are still too big. He can't even get them into his mouth.

I took him to a dentist yesterday, hoping for a solution. Do the dentures need adjusting? Or does he need a new set? I was told that he probably needs new dentures but in order to get these, they have to take a special x-ray in a panoramic machine and in order to do that, he needs to be able to stand up. They said they can't do it in a wheelchair. This, too, baffles me. I admit I didn't see what this machine looks like, but... what can I say? Here's more motivation for Bob to get up and stand.

And back to the mouth pain. What caused it? Why did it disappear? Then, I wonder, did his mouth really "hurt" or all this while was it just that Bob was frustrated without his dentures and didn't know the proper word to describe what he was going through? And I think of all the chasing around we did, going to different doctors, running all sorts of tests.... yikes. Or was it a vitamin deficiency, like one doctor suggested, and now that I have him on a vitamin regimen, it's better?

This, I think, is one of the hardest things. Not knowing what goes on his mind. Misunderstanding what he's trying to tell me because he can't find the right words. Even now, I'm not sure if it's the dentures he's talking about being "gone" or something else--like his ability to speak and swallow...


Nikki said...

It must be frustrating. It's like one of the kids at work is trying to tell me what they want by pointing and I can understand their frustration. Sometimes I think they must think I'm stupid because I'm not understanding them!

cheri said...

so, let me get this right: the dentist has never had a wheel chair bound patient in need of dentures? WTF?

Jenn said...

I've had a panoramic x-ray at the dentist. I'm surprised there isn't an adjustable arm on the machine for those in wheelchairs.
The x-ray is simple and quick, but the patient needs to stay still (of course). No "film" needs to be inserted into the mouth like the old fashioned way.
Have you been keeping a journal of the things done for Bob's mouth pain? (Ha, like you have time for one more thing, right?) Just wondering if you have seen a pattern within the notes if notes were kept.

Diane said...

Thanks, all of you, for the comments! About the dental x-ray: Bob has Medicare which doesn't cover dental, so actually has no dental insurance. He does have "medically needy" Medicaid, but that only kicks in after $719.00/month out-of-pocket. This dentist will actually take his Medicaid (he is a new dentist, just recently opened shop) and new dentures will certainly cost more than $719.00 but he doesn't have the proper equipment to accommodate a wheelchair. He is the only dentist in the county that takes Medicaid. Always, it comes down to money, doesn't it?

Jenn, the only thing I noticed consistently about the mouth pain is that lately he rarely complains unless someone mentions it. If no one mentions it, well, it doesn't seem to bother him. If someone says "how's your mouth? does it still hurt?" then he goes on and on and seems to get fixated on it. So, I walk around on eggs and try not draw any attention to his mouth!

Jenn said...

It baffles me how Medicare doesn't cover dental. The mouth is a serious cornerstone to good health! *sigh*
Can you freelance write some of your experiences with bob's situation for mags? Maybe Women's Day, Family Circle (is that the right name?), Redbook, etc. - for some benji-greens?

Stephany Harvey said...

Jenn, did his mouth pain clear up? My sister, who is a nurse, had gastric bypass surgery, and afterwards had mouth pain from a vitamin deficiency, secondary to absorption problems. She took B12 pills to help it. Does this sound like something that might be of help?

Your blog is the best stroke story I have been able to find. Thank you!