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Friday, March 4, 2011

More on Mouth Pain

We are still dealing with the mysterious mouth pain, and Bob is suffering terribly. Somedays, it's all I hear: "my mouth, my mouth" and "hurts, hurts". I am at my wit's end and wish these doctors would get to the bottom of it and find him some relief.

Last week, we went back to the Pain Management doctor. He had done two nerve block injections in Bob's jaw, (to the tune of $30.00 a pop) and neither worked. His plan was to do three more injections, but Bob and I "discussed" this, and since the injections weren't working, I figured it was a waste of time and money to do any more. When I was registering Bob at the counter, the receptionist gave me a "consent form" for another injection and I told her that we had decided against another injection but wanted to pick up his pain medication scripts and talk to the doctor about any alternatives. So, the receptionist yells to someone in the back room "No injection for Robert!"

Of course, Bob heard this. Immediately, he began yelling "Injection! Injection!" Poor Bob, in his wheelchair, pulling at the corners of his mouth with his fingers, showing everyone in the waiting room his gums. Tears begin rolling down his checks and he's crying "My mouth! My mouth! HURTS!" and this is in a full waiting room and, of course, everyone is staring at me like I am the evil witch who won't let this poor man have his mouth injection.

God. I wanted the floor to open up and swallow me. I wanted to run out the door. Instead, I pulled a chair up to Bob's wheelchair and tried to calm him down. I reminded him that we had talked about this and he had said the last two injections didn't work and why pay for more injections, if they don't work. At this, he started yelling "MONEY! MONEY!" and everyone is looking horrified at me, so now, not only am I the evil witch but I'm also a cheapskate. I was never so happy to hear his name called and get behind the closed door. Finally, the doctor came in and I asked him if he thought a third injection would help if the first two didn't work. The doc pretty much agreed that it would be a waste of time and money. But, he wouldn't give Bob any more pain medication and told me to soak his feet in Epsom salts. Christ.

So, the next doctor we went to see was Dr. Doom, whose an ENT (ear, nose, throat doctor). Dr. Doom is so known to us as he is the doctor to see when you want to hear the worse case scenario. I mean, say you go to Dr. Doom because you have an earache, he will tell you that "it might be an infection but--it might also be a terrible incurable cancer and I'll have to cut your ear off, and even after that you'll still die a slow and painful death. BAH HA HA HA!! So, let's run some tests and find out, shall we?" Anyway, we went to see Dr. Doom, who surely will get to the bottom of this, because no one else seems to know what to do. Dr. Doom examined Bob and now has ordered both PET and CAT scans of his mouth and neck, because, you know, it might be cancer, or it could be radiation necrosis, or it could be something else. Bob goes in for tests next week. Now, all we can do is get the tests done, wait and worry.

Other than that, I'm still waiting for the financial assistance paperwork from Bayfront to see if I can enroll Bob into Outpatient Rehab there.


Jenn said...

It sucks seeing someone you love suffer so much without being able to extend some relief. I wish for you magical healing hands! *POOF* (Did it work yet?)

Hey, what ever happened to the oxygen therapy? I thought it was used for his tooth situation, which seemed to improve other parts of the body? Is it no longer an option because of some other thing in Bob's current condition? If so, what are the plus/minus of the effects? I was re-reading about the therapy and thought - wouldn't that be great if that's all it took? Just wondering.

Diane said...

Hey Jenn, thanks for the comment. I was just complaining about not getting any comments:). About the oxygen therapy: I have been begging all of his doctors ever since the stroke to please get him into the hyperbaric chamber, but am always being told that it is not FDA approved (for stroke) and the insurance will not pay for it or it is too experimental of a treatment, etc. And I have checked into every source I could find but only came up with one clinic in Largo that charges $250.00 per session and said he'd need 20-40 sessions. Ouch. And I have long suspected his mouth pain is from radiation damage, but every time I tell a doctor this, I am told that "it doesn't look like it" or "it's too late for that" or "too early since his last treatment" blah-blah-blah, so I finally got him in to see Dr. Doom, who is the first doctor to agree with me that it just might be radiation damage causing the mouth pain which is why he is ordering Pet and Cat scans to see if the scans show radiation damage (and weirdly, I am praying for this, because that should send him to the hyperbaric chamber and the insurance should pay for it and I believe it would do him a world of good, not only for his mouth but everything else.)

Jenn said...

What a wonderful mantra! Bring the universe closer to you! YES!
And oh, Bob, Bob, Bob. Classic ornery-ness! At least he's reacting and sassy about it! The stinker! : ) Sounds as if he's going through those 5 stages Dr. Kubler-Ross defined - denial, anger, bargaining, depression, and acceptance. And they don't necessarily happen in that order.

Take a deep inhale and think "I", exhale, emptying the lungs fully and think "AM". Repeat this until you begin feeling centered and calmed. Do this with Bob (for now with his own, natural breath). Add this to your "tool box" right next to your mantra! : )