I have been having left side jaw pain for almost a year from a blocked salivary gland due to my CF. I had a steroid injection and if this doesn't work, surgery is the next option. Has anyone dealt with this? If so, what treatments worked, helped, any thoughts. I'd rather not have the surgery so am looking for other thoughts. Thank you for your input.
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Salivary gland issues
- Thread starter rheamc
- Start date
LittleLab4CF
Super Moderator
My first problem was convincing my doctor that salivary stones exist. Hopefully you don't have that problem, but I have serious concerns about using steroids to break up a stone. You are certain that your doctor agrees with you/told you that you have salivary stone(s)? I'm kidding, but I would ask if you have any doubts.
They are for real, in case you need reassurance. My mouth is watering as I write this, the memory of the stones I have passed, spit or whatever the term should be, is vivid. Most stones popped out during a yawn. I've tried to force a yawn and so far I haven't been able to excise a gritty pearl. Something tells me that the stone is seriously stuck, even being walled in by the body, which can happen. You may find a dentist is better equipped and familiar with removal of salivary stones. The surgery, if you require it, is usually a small cut to widen the usual opening, closed with a single stitch.
My PCP removed a couple of stones from the sublingual salivary glands and my dentist popped one from one of the maxillary salivary glands. He used his suction tube with a special tip and aside from the feeling that the stone was in my ear, it was more or less painless.
I'm guessing that your doctor knows what she/he is doing. My experience has been more of a manual stretching of the salivary gland opening to remove the stones. One story told me by a nurse at my CF clinic shocked me, but gave me ideas. While at her dentist one time, an air jet was accidentally pointed at the orifice of an upper salivary gland. It immediately inflated, and it was very painful, I'm sure, but she reported having a lingering sludge that drained for a day or so. I wonder if any fluid could be washed into the salivary gland.
The usual method for small stones could work for you. Sucking on a lemon and keeping extra hydrated along with massaging the suspected gland is effective. Some super salivation over an extended period is your best and probably last do it yourself fix.
Good luck, don't overdo it,
LL
They are for real, in case you need reassurance. My mouth is watering as I write this, the memory of the stones I have passed, spit or whatever the term should be, is vivid. Most stones popped out during a yawn. I've tried to force a yawn and so far I haven't been able to excise a gritty pearl. Something tells me that the stone is seriously stuck, even being walled in by the body, which can happen. You may find a dentist is better equipped and familiar with removal of salivary stones. The surgery, if you require it, is usually a small cut to widen the usual opening, closed with a single stitch.
My PCP removed a couple of stones from the sublingual salivary glands and my dentist popped one from one of the maxillary salivary glands. He used his suction tube with a special tip and aside from the feeling that the stone was in my ear, it was more or less painless.
I'm guessing that your doctor knows what she/he is doing. My experience has been more of a manual stretching of the salivary gland opening to remove the stones. One story told me by a nurse at my CF clinic shocked me, but gave me ideas. While at her dentist one time, an air jet was accidentally pointed at the orifice of an upper salivary gland. It immediately inflated, and it was very painful, I'm sure, but she reported having a lingering sludge that drained for a day or so. I wonder if any fluid could be washed into the salivary gland.
The usual method for small stones could work for you. Sucking on a lemon and keeping extra hydrated along with massaging the suspected gland is effective. Some super salivation over an extended period is your best and probably last do it yourself fix.
Good luck, don't overdo it,
LL
ChrisThomas
New member
Stones are real!
About 2 years ago I had 7 stones removed from my submaxillary salivary gland. One of them was over 7 millimeters. Since I was 13 I had these "episodes" where I would get what I thought was a charley horse coming out of the underside of my left jaw, lasting for about a minute and excruciating. Now I know it was my gland.
I have been having left side jaw pain for almost a year from a blocked salivary gland due to my CF. I had a steroid injection and if this doesn't work, surgery is the next option. Has anyone dealt with this? If so, what treatments worked, helped, any thoughts. I'd rather not have the surgery so am looking for other thoughts. Thank you for your input.
About 2 years ago I had 7 stones removed from my submaxillary salivary gland. One of them was over 7 millimeters. Since I was 13 I had these "episodes" where I would get what I thought was a charley horse coming out of the underside of my left jaw, lasting for about a minute and excruciating. Now I know it was my gland.
LittleLab4CF
Super Moderator
I wonder how many people pop a salivary stone into the mouth and bite it, never knowing that it was a stone. I've done this just enough to suspect that I just crushed a stone and remove it from my mouth rather than swallow it, assuming that it was a bit of food or something. Like most CFers, my teeth are crappy, thanks again to the dysfunctional salivary glands and sometimes that unexpected crunch has been part of a tooth. Which is the main reason I am a bit more aware of anything odd in my bite.
I became obsessed with what turned out to be my first known salivary stone. In my early twenties and camping overnight at a remote KOA campground, I wasn't near a hospital and didn't really consider it that serious. I had heard of salivary stones but wasn't sure where but it was logical. Getting aggressive with the stone for at least an hour netted a huge stone, about 3/8" or a centimeter oval. As soon as I got back home I had to see my doctor. I don't know if an infection caused me enough discomfort to get after it myself or my aggressive pressure and manipulation invited it. Given the opportunity to do it over, the wiser thing would have been to enlist a doctor or dentist. At the time I felt like I was going to jump in the fast running Yakama River passing by the camp if I didn't do something.
Home stone removal may not be a choice, but my experience favors a professional if gentle methods fail.
Chris Thomas,
The only cause I am familiar with is dehydration. Do you have a doctor's diagnosis of why you make stones? Do you also have other stones, kidney, gallstones...?
LL
I became obsessed with what turned out to be my first known salivary stone. In my early twenties and camping overnight at a remote KOA campground, I wasn't near a hospital and didn't really consider it that serious. I had heard of salivary stones but wasn't sure where but it was logical. Getting aggressive with the stone for at least an hour netted a huge stone, about 3/8" or a centimeter oval. As soon as I got back home I had to see my doctor. I don't know if an infection caused me enough discomfort to get after it myself or my aggressive pressure and manipulation invited it. Given the opportunity to do it over, the wiser thing would have been to enlist a doctor or dentist. At the time I felt like I was going to jump in the fast running Yakama River passing by the camp if I didn't do something.
Home stone removal may not be a choice, but my experience favors a professional if gentle methods fail.
Chris Thomas,
The only cause I am familiar with is dehydration. Do you have a doctor's diagnosis of why you make stones? Do you also have other stones, kidney, gallstones...?
LL
I did not have a stone, I have inflammation and swelling of my salivary gland due to mucous blocking my ducts. I had a CT scan, no stone. I had a Kenalog injection by an ENT surgeon whose specialty is head and neck issues. I think it may be working. Not a lot of discomfort since the injection, so I am hopeful this may work. I appreciate the personal experience. I guess a future stone is not out of the question, but I hope this resolves it for a while. All I do is stay hydrated, all day, every day. It's always something, isn't it with CF?