All this has been going on for about two years now. Besides the constant burning pain in my ear, jaw, gums, cheek, tongue... I have a slightly swollen, soft, moveable something under my jaw on the same side. About halfway along jaw line just inside jaw bone. Doctors sometimes tell me it is lymph node, sometimes salivary gland. Ultrasound checking for it Dec 2012 (at my request) said 8 mm lymph node in the area I showed them. GP and ENTs and oral surgeon maintain that it is salivary gland due to lumpy feeling and that they would not be able to feel something 8 mm. And they all think I'm nuts, I think, obsessing about you can guess what I worry about with all this pain, the lumpy, and the Dr. Google...they all tell me they feel lots of glands and nodes and that I am just fine...they are sure.
Anyone else have something like this? I do notice that size can vary slightly, but not really increasing over time, or decreasing...just can be different throughout day. Never noticeable visually...have to really feel around for it sometimes.
Oh and not really any pain unless I press really hard.
Yes!!!! I have exactly the same thing. Except I have more than one lump. But there is one in particular that if I press on it in just the right way it sends the shooting pain straight up through the top of my head like a hot sharp fire poker being rammed right through to the soft area inside of my jaw, through the top of my mouth, my nose nasel area, my eye and my head. The other lumps and bumps always feel tender. I tell every doctor I go to and they don't seem so concerned about it either. However when this all first started with the ear pain, droopy face etc, doctor did pay attention to swollen glands as one of his theories ways saliva gland stones, so he sent me for ultrasound of parotoid glands and thyroid. It came back with enlarged lymph node and enlarged thyroid no nodules. He said it was nothing to worry about. Now strangely , on the same side I have an odd "lesion" on the inside of my cheek in the inside of my mouth. It came out in October. I showed doctor. He did not seem so concerned. Said you probably bit it....yah right, come back in a few weeks if has not healed. Of course it did not. He said it looked "vascular". Once again not too concerned. Went to dentist a few months later to have him check it out when I was in the height of TN pain. He was an absolute jerk. I told him I was concerned about oral cancer. Told me I should not read things on internet. He said I had Tic D. and kinda made fun of that. Well a few weeks ago I realized this purple red blood blister thing had grown to double in size and now was hurting....and I seemed to be getting more substantiall nose bleeds on that side also, which is also the TN side, and the swollen lymph node side and I said, I need someone to look at this spot who is going to take it seriously....so finally a referral to an ENT. Oh and by the way during this period I had seen the neurologist and the neurosurgeon for consult on gammaknife, and pointed out the sore and swollen lymphnodes and they really didn't concern themselves with it either. Its amazing how with all that knowledge nobody can step back and take a broader view and consider all these issues together may be related.
Let us know if you ever get any insight into your swelling.
Thanks for responding. I also have a weird spot on my tongue that freaks me out...gp, ent, dentists...they act like I am a paranoid hypochondriac. But they do act nice, almost condescending, but only one of them was rude about it. My gp said to come in any time I have a concern. But I'm so tired of going in. Why can't they just do something to help us out. I will try to keep updated...let me know what you find out, too, if you think of it.
Cosmoangel said:
Yes!!!! I have exactly the same thing. Except I have more than one lump. But there is one in particular that if I press on it in just the right way it sends the shooting pain straight up through the top of my head like a hot sharp fire poker being rammed right through to the soft area inside of my jaw, through the top of my mouth, my nose nasel area, my eye and my head. The other lumps and bumps always feel tender. I tell every doctor I go to and they don't seem so concerned about it either. However when this all first started with the ear pain, droopy face etc, doctor did pay attention to swollen glands as one of his theories ways saliva gland stones, so he sent me for ultrasound of parotoid glands and thyroid. It came back with enlarged lymph node and enlarged thyroid no nodules. He said it was nothing to worry about. Now strangely , on the same side I have an odd "lesion" on the inside of my cheek in the inside of my mouth. It came out in October. I showed doctor. He did not seem so concerned. Said you probably bit it....yah right, come back in a few weeks if has not healed. Of course it did not. He said it looked "vascular". Once again not too concerned. Went to dentist a few months later to have him check it out when I was in the height of TN pain. He was an absolute jerk. I told him I was concerned about oral cancer. Told me I should not read things on internet. He said I had Tic D. and kinda made fun of that. Well a few weeks ago I realized this purple red blood blister thing had grown to double in size and now was hurting....and I seemed to be getting more substantiall nose bleeds on that side also, which is also the TN side, and the swollen lymph node side and I said, I need someone to look at this spot who is going to take it seriously....so finally a referral to an ENT. Oh and by the way during this period I had seen the neurologist and the neurosurgeon for consult on gammaknife, and pointed out the sore and swollen lymphnodes and they really didn't concern themselves with it either. Its amazing how with all that knowledge nobody can step back and take a broader view and consider all these issues together may be related.
Let us know if you ever get any insight into your swelling.