I had chronic swollen submandibular swelling for 2 years, the size of a golf ball and that's just what you saw from the outside. Subequently stones were found in the duct, 2 cm worth of them. They are still in the duct. The pain caused from the swelling was due to the stones which were trapped in the gland trying to come out through the duct opening. I found that when I pushed hard on the gland the pain went through the roof temporarily but I believe that is how I got those stones out and into the duct. While it was painful to do that, I did feel relief afterwards and I could feel saliva flow on some of those occasions. On the last incredbily painful flare I had, the floor of my mouth swelled, every gland appeared to stop producing normally, my tongue swelled and my throat swelled. My saliva became so thick that I choked on my own spit trying to swallow it. It scared the heck out of me. Given this, I don't necessarily recommend trying to work those stones out for yourself. At the time I didn't realize that's what I was doing. The last flare very well could have caused me to choke to death, that's how bad it was.
If you google salivary gland stones, you will find some ugly looking pictures of what they look like once they're in the duct. Mine come to the end of the duct during a flare and look like a big ugly white zit head. Yes, gross!! Which is why I beleived my *first ENT when he said it was chronic infection that was causing it. I thought it was pus until I popped a gland stone out. I had it biopsied and it was confirmed a stone.
The first ENT I saw for my gland missed the stones on the CT scan. The 2nd ENT I saw brought the disc to a hospital where she reviewed them with a radiologist. This is because the hospitals radiology dept has different windows with which to view the results on and also because a radiolgoist is better trained than the Dr. in this area. She is the one who found them for me. I like her because her ego doesn't get in the way of her patient and she knows when to consult another expert where she is not the expert. The first ENT wanted to remove my gland, claiming I could die from the infection if it spread. What infection? He told me if he could not remove the gland he would no longer be my ENT. Hence the 2nd ENT. She is a gem.
Dr. Gem advised she did not want to dilate the duct to remove the stones as she could not guarantee she could get them all out. She is anti-surgery and that is why I love her. She advised that Mt. Sanai is currently using Sialendoscopy for this procedure. There may also be other facilities which use this technique. It's relatively new to the states. I will eventually look into this to get them out.
Dr. Gem also advised that a patient should not have a CT scan with contrast if stones are suspected as the lacrimal probe that is inserted into the duct to inject the dye could propel the stones further back into the duct or if still in the gland, further back into the gland where likewise, it could become inaccessible.
If you have chronic swollen painful glands I would strongly suspect that there are stones present and I would make sure I found a Dr. who was willing to entertain that idea rather than being treated for chronic infections for 2 years and an egotistical Dr who was bullying me into cutting my gland out as was my case. My gland produces plenty of saliva. It just directs itself around the stones to get out. My gland still occasionally flares, but not as often and the gland itself is always swollen. It?s the size of a marble and you can feel and see it there.
Of course, this is my story and I don't expect it pertains to everyone else. Some people do get chronic infections and some may swell because their particular flares cause that, who knows? Also, some people do need to have their glands removed if the flares are chronic and particularly painful, even when stones are found because they may not be accessible to remove otherwise. Who knows, I may end up having the gland removed for that very reason. I could still be producing more stones as I type! However I hope the story helps so that if you do suspect stones, you have gained some insight into why your gland may be swelling.
