Sharing experience with salivary stone in the submandibular gland
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Hello, I wanted to share my recent experience with a salivary stone in the submandibular gland. I will say my experience with these stones was fustrating and painful. Although it can be excurcitingly painful, there is often no quick solution to it. The first time I experience the problem was about 3.5 years ago. After eating, underneath my chin would swell for 45 minutes to a couple hours. While the swelling was uncomfortable, I don't remember it as particularly painful. I went to a number of ENT appointments and had an x-ray taken, but the ENT was never able to confirm the stone, although we both felt pretty confident it was the problem.
I was put on predisone. I wish the doctor would have gone into more detail about how this medication can affect you. I had horrible side effects, including: headaches, auditory hallucinations, extreme mood swings, chills and general discomfort. The predisone did not seem to clear up the stones immediately, but a couple weeks after taking it the problem did go away.
The gland did not give me much of a problem the next 3 years. It might swell with a single meal every 8-10 months, but nothing of note. This last weekend it began swelling after every meal like the old days. On a Saturday, the fourth of July, the gland swelled and did not go down after eating. I rarely drink and I was drinking that day, I'll personally say that I felt beer very much agravated the stone and was at least partially responsible for it getting infected.
Sunday the gland stays inflamed, over the next 48 hours the beginning of what would be excruciating soreness and pain began. It spread to the other side of my neck/chin, throat, jaw gone, teeth and even what felt to be my ear by the end of it. I also had discomfort and pain when swallowing. I have since come to understand that the lingering swelling was caused by the infection. There was puss coming out of the gland underneath my tongue, which was one clue to the infection.
On Monday I went to the ER and then followed up with an ENT specialist. I was placed on Keflex (antibiotic) and ibprofen, at that point I declined the predisone as I wasn't sure it had done much the last time and it caused horrible side-effects. I was also instructured to suck on lemon drops, drink lots of water, apply a hot compress and massaged inside/outside of the mouth on the gland. I did all of these things as religiously as I could. My plan with the doctor was to regroup in a week after trying these things.
Monday night/Tuesday morning I had extreme pain and started to feel a lot of anxiety about feeling this way for an entire week. I called the doctor Tuesday morning and told her what I just wrote (I was extremely emotional from the pain and lack of sleep). I decided to try the prenisone again and she wrote a script for pain management. I will say calling my doctor was a very good decision, if you experiencing worsening of your symtoms, even if it is mostly increased pain, please call your physician and find a better plan of care. She ordered a CT for early the next week too.
I took the predisone around 2pm this afternoon. I continued with the others instruction (lemon drops, warm compress, massaging gland, etc). Pain seemed to get to a more managable level about 4 hours after taking the medication and another dose of ibprofen (600 mg), still a lot of discomfort though. Well about 6pm I begin pushing a LOT of pus out while massaging the gland, it just kept coming for about an hour. At this point I could finally visualize the stone on the base of gland and was excited because I thought this meant the doctor would be able to remove it. Luckily for me, it popped right out. I could immediately feel the gland relieving some of the pressure and an hour later am experiencing only some lingering swelling (much reduced) and tenderness on the outside of my neck/chin. No pain when swallowing anymore. No pain underneath the tongue.
If anyone is ever dealing with a similar situation, I'd love to answer questions about when helped me. I feel like I was really scared and anxious through this process and I'd like to help others that might be going through it.
3 likes, 33 replies
mat71169 stefanie73552
Edited
Thx Stef. Hello all, I also hope my salivary stone (submandibular sialolith) story may help someone too.
My stone is 11mm, too big to squeeze out, but its cut out as of yesterday, Im recovering well.
It is a scary thing to happen to you, but you are not alone and it can be quick to resolve. In short and sweet summary - do your due diligence, but act fast.
Not everyones situation is the same, this is my 2 weeks of hell.
Couple of years ago I got very very sick after a week long celebration at the beach bar, I thought it was just cumulative effect of so much alcohol. A huge lump swells up under one side of my jaw and its incredibly painful in the mouth area, hard to swallow anything, impossible to eat solids. Bedridden.
My GP suspects stone, prescribes antibiotics and refers me to specialist surgeon. Scans and surgeon confirm its a 10mm (at that time) submandibular stone. He says wait for the antibiotics to settle the infection then get the whole gland removed. It does settle after pus massaged/worked its way out (unpleasant yet relieving), I dont however get the gland out right away (glad in hindsight). I spoke to a second surgeon and researched about removing just the stone to retain my gland. General consensus was too big a stone, too much chance of damaging gland/reoccurrence etc. Came across all sorts of suggestions such as breaking the stone with ultrasound, herbals, iodine etc, also some articles about stone excision such as https://www.sciencedirect.com/science/article/pii/S2210815712000364
and various excision articles on researchgate.net but my thoughts were dismissed by the 3 doctors I talked to...
Several years go by without incident and I all but forget about the stone. But its still there and the inevitable blocking and infection comes back last week... with a vengeance. I had felt it start before and gone straight to the GP for antibiotics but still was bedridden the next days, had a little repreive as I stayed in bed, stopped eating and survived on the occasional sip of smoothie/water. But the infection gets the better of me and I end up admitted to emergency, on a drip and in incredible pain. One of the ENT docs said something about trying to intraoral excise the stone if it settled but by this point I was begging them to take the whole gland out, with the original 3 docs warnings ringing in my sore ears. They would not remove the gland while so inflamed however, instead tried to aspirate (suck out the pus) first with an ultrasound guided syringe and local anasthetic.. which went wrong. Haemorageing, ridiculous pain, pus, horror.
Into the 3rd day on IV, body shutting down drugged up on endone etc I was massaging and working my tongue around when an epussphany (I now know a fistula) erupts in my mouth filling it with pus and stale blood. But pressure/pain relieves too. I improve out of sight within seconds I can walk and talk!!! The ENT doc happens to hear about it and she gets me in her chair for a looksee. Tells me fistula broke through and shes going to help it by making it bigger... just a little numbing spray and nick with the scalpel. Upon doing so she says 'I think I can see it, lets try get it out' bit more numbing spray (no needles) long pair of pliers and hey presto im ecstatically holding my 11mm stone and instantly feel even better again.
Literally singing&skipping out the door I am amazed at how simple and easy that was in the end, and the massive difference it made in but a moment. 'Just wish I did it soon as I felt it coming on 2 weeks ago'.
A day later and in retrospect, I recommend soonest possible intraoral (inside your mouth) removal of stones over extraoral entire gland removal because:
I am on cephalexin 500mg and sticking to smoothies for a few days to minimise irritation, also using a zero alcohol mouthwash and brushing twice daily. Im virtually pain free (apart from where the aspiration went wrong). So far so good. Good luck to you too.
Sumup - if it can be cut and pulled out through your mouth without duct damage, do it asap.
dee48739 stefanie73552
Edited
Hello, I wanted to share my experience with salivary gland stones. The youngest i remember having pain while eating was when i was 6-7yo. I've had these painful experiences throughout my life, some mild, others have feltl like someone was taking a knife and stabbing in the neck. I would be unable to talk, swallow, eat or drink. I never knew what it was or why it was happening. I believe mine is related to lack of water intake and seasonal allergies when it gets dry out. I went and saw an ENT DR a few years ago and mentioned my issue, he didn't seem to know what I was explaining (which i thought was strange). He told me to come back when I'm actually having the problem so he can evaluate. I did some research and discovered stones. Made complete sense. I've had them on both sides but my left side seems to give me more attacks. The location is under my jaw line and tongue. Very painful when trying to drink or eat anything. I have found sucking on lemons, pushing and massaging the gland seems to resolve the problem quickly, especially when I do these things immediately. I assume my stones are small in size since it goes away as the day goes on. I've never gotten an infection. The other symptom I get is my saliva becomes very thick, mucus like. I haven't read this anywhere, so I'm curious if anyone else gets this?
The other thing I've noticed is when I had done a cleanse I have an attack. I also take products that remove heavy metals and had an attack the following morning. So I'm curious to know if maybe my body is trying to flush out these stones?
Where we live there is a natural water duct of alkaline water which we drink daily, unsure if drinking this type of water which has more natural minerals in it may cause more stones? I've wondered if I need to watch my calcium intake as well?
Also curious if a history of these types of stones means I will be more prone to kidney stones, gallbladder stone, etc.?
natalia07088 stefanie73552
Posted
hello. I am experiencing exactly what you’ve just wrote about. I’ve had this for about six months on and off . at first, it was just hurting when I was eating, the swelling, went up and down . but in the last month and a half to 2, underneath my chin is just swollen permanently, underneath my tongue to puss is coming out many tomes per day. I manage to pull out few little stones few times a day. It’s fairly painful, very annoying, prevents me from eating often, gives me a lot of anxiety. I do hope I can finalise this and finally live again without any continuous pain.