Salivary Gland Problems.

There seems to be no forum for my problems. So, on the off-chance, I hope someone can help me. I posted on this site just over a year ago on the same issue. Since then, I have had several episodes of an extremely painful, swollen gland and a bad infection on one occasion. The swelling has never gone down altogether in all that time. I saw an ENT consultant over a year ago and was discharged after 2 visits. I now have a new appointment with a possible offer to remove the gland. The crux of the matter is - I could live with my condition if I had to, but would it make matters worse? What is the better of the two evils? Adding to that, my father died of cancer of the throat in the early 1970s, though I do not know exactly where the cancer was. Can anyone advise me?

[pennyannie]

Hello ayayay -

I know nothing of Macular Degeneration but have had my saliva glands damaged with radioactive iodine treatment given to me for Graves Disease back in 2005.

I tried Reflexology along with head and neck massage and it was very helpful.

Having had my thyroid burnt out with the RAI, living without a thyroid is problematic, to say the least.

Everything in your body is there for a reason, it's like a house of cards, it's finely tuned, and I'd suggest you try to keep as much of it as you can.

[Fruitandnutcase]

To answer your previous question to another group about the yellow stain during your hospital eye test - could your consultant be checking you for dry eyes? My optometrist does that to check my tear break up time - I have seriously dry eyes.

[Hidden in reply to Fruitandnutcase]

That is quite possible as I do have dry eye. Thank you.

[Watmum]

Not sure if this helps but I had half my salivary glands removed as a teenager in 2 separate operations. It’s never caused me a problem since and was always told that the remaining glands were enough.

[Hidden in reply to Watmum]

Thank you for your reply. Do you mean they removed one each of your major salivary glands? Do you know why? It is not very likely that you had stones in all three of them. I have had a stone in the past, but last year no stone was found. Unfortunately, they did not take the trouble to investigate further - just discharged me. For over a year now I have a permanently swollen gland and discomfort most of the time. What I really like them to do is to check it out properly, not just assume, which they have done. How can I persuade them to do that without sounding clever? If it was merely a narrow or scarred tube, I probably would carry on putting up with it without an op. But it could be something more serious. What were your ops like? Can you tell me about them? Of course, you were young then, and young flesh heals better. I am in my early 80s, which could increase the risks.

[ViperVixen]

Hi;

Unfortunately, this is quite a common problem (many are unaware of this). What's going on there are stones in the gland(s). If a stone is unable to pass (be excreted)

it can block an opening where the saliva would exit from that gland (causing pain, swelling & at times infection (on ocassion, an abscess). These salivary stones can be as tiny as sand granules & larger (I've seen few size of pebbles, size of a marble..). Many ENTs prefer to remove the gland, especially when the patient has had periodic flare ups with the salivary

gland(s) (they see it as chronic problem). Also, brings them more money etc; to do this procedure.

This is a very delicate surgical procedure & you need to get someone extremely well trained & experienced to do this. Many ENT's & some ENDOs (some Endos can & also do this surgical procedure as well in USA at least). Not all ENTs are Head and Neck Surgeons. The one's that are, not all are very good at this particular surgical procedure either. Need to worry about nerve damage done as result of this type salivary gland (removal/and or just stone removal--most will remove affected gland instead of the stone) surgery. Unfortunately, it happens more often than surgeons care to admit, and the damage is rarely temporary.

So, if you do decide to have it removed--do you research and find highly qualified surgeon who has many years experience doing this exact surgical procedure. Do not be afraid to question the surgeon "how many of these have you done, how many years doing this surgical procedure etc;". If the surgeon gives you a snippy comment and attitude when ask these questions, get up and walk out. Find a different surgeon.

**Since you mentioned your father had throat ca., ("ca." - cancer) if you're concerned here about this, can have throat tested for it (can even just look down throat & if see some abnormal changes--if any-- that MD can do a bx then, or at later time). Also, can have affected salivary gland(s) biopsied to check for cancer of the affect gland(s). Many often do a needle aspiration bx for this ("bx" - biopsy) - usually (though not always) it's done by a Radiologist- who is also a licensed M.D..

Hope this helps.

ViperVixen

[Hidden in reply to ViperVixen]

Thank you, ViperVixen. That is all very helpful, though I have read up on the ins and outs of the possible op. What I cannot find out is - would leaving it destroy gland tissue or lead to a worsening of the condition?

My appointment is scheduled for the 13h February. So I am trying to get myself prepared. I am making a list of symptoms and of questions to ask. I am in the UK. Our NHS does not give us a choice of consultants and surgeons. We have to take, or leave, what is offered, though we may ask (though not always granted) for a second opinion if we are concerned. I suppose I could go private for diagnosis and advice.

I am jumping the gun a bit here before the appointment, but a year ago I just had a CT scan. Since no stones were found the consultant showed very little interest and hardly talked to me. I will be seeing the same consultant again.

Any further advice would be greatly appreciated.

[ViperVixen]

Hi; wanted to add this bit--ask your MD to schedule you for an Ultrasonography (ultrasound) to do salivary glands on BOTH sides of face, jaw, neck. Can also go the MRI route as well (that will also show stones & other activity -if any- as well) or, a CT Scan -will do the same to show stones & other activity.

Viper Vixen

[ChottAlg]

Hi ayayay,

First of all, so sorry to hear about your salivary gland problems and I empathise. About 10 years ago I started having painful swellings in my neck too and eventually got diagnosed with stones in the gland. I've probably had 3 episodes of infection since, one of them was so bad that I was bedridden for 10 days fighting it with really strong antibiotics and codeine (amoxicillin). The consultant who ordered my scans (I think they were X-rays with dyes to see the passage of the dye through my salivary glands and tubes) said that I had stones, some scarring, and "pockets" created in the tubes from the infections, which would increase my likelihood of reinfections. I was lucky in the sense that the consultant I saw was pretty reluctant to send me off for surgery. He said the best way that I could avoid recurrences was to make sure I always drank plenty of water every day, at least 2 litres (twice the daily recommended 1 litre), eat high water content fruits & veg, use chewing gum or suck on lemons or sour candies. I needed to always make sure I had a very good flow of saliva through both glands, both to keep it clean and stop the stones from collecting and forming. I also found that it was useful following other dietary advice that's usually given to kidney/other gland stone sufferers.

Since then I've been diagnosed with Graves hyperthyroidism and thyroid eye disease. I'm now convinced that the salivary gland stones were early signs of thyroid dysfunction and possibly even Sjogrens. I still occasionally get really dry mouth and very minor signs of a blocked salivary tube, but I then get out the chewing gum and also brush the inside of my cheeks to try to dislodge any small stones that may have formed. I also get regular acupuncture. When I had the episodes of infection, the acupuncture really helped me out with managing the pain.

If you've got the swelling, to me that's a sign of active infection. For me, the only thing that made the swelling go away was being put on antibiotics. However, the big downside is that I regret having had the antibiotics - it is so powerful that it totally clears your gut of any healthy microbiome. It's my personal belief that it contributed significantly in some way to precipitating the autoimmune response behind my Graves. No healthy gut bacteria left to help fight off the real baddies you see. I can't say that's definitive or would apply to anyone else, but in my case I feel I can't discount it.

I guess see what your consultant says. Mine told me that after seeing him on that occasion, if I was getting the re-infections as frequently as once a year then I could write to him again and ask for removal of the glands. Thankfully after following his other advice I haven't had to do so since, touch wood.

Best of of luck to you, post a follow up here after your consultation if you have time.

[Hidden in reply to ChottAlg]

Thank you very much for sharing your experience with me. I know we are all different and things work out differently in different people. I have a course of antibiotics recently, the only one I have ever had for this condition. I understand what you are saying about the good bacteria in your gut. It seems I have gone the same way, having almost continuous stomach and bowel discomfort, which is wearing me down. My GP told me to keep taking Gaviscon, eat yogurts and take paracetamol when needed to ease the pain/discomfort. He is waiting for the report from the consultant before he takes it any further. My gland (sub-mandibular) is no longer painful at present; just discomfort, but it is still quite large. In fact, it has never gone down altogether for over a year now. A year ago it was suggested by the consultant that I had perhaps a very narrow tube with scarring. Should he have been able to see that on the scan? It seemed more like a guess. Since the last infection in November thick, salty mucus exudes from it a few time a day.

Anyway, I will now wait and see what happens at the appointment. I just want to be prepared for what I am going to be told - if they tell me anything. I'll let you know.

Again, thank you.

[ViperVixen]

Hi Ayayay;

I'm obviously not knowledgeable at all of how the NHS in the UK works, because I'm from USA. Nonetheless, regarding stones in the gland...you mentioned had a CT scan 1 yr ago & they saw no stones then. Do understand, just because no stones were there at time when CT scan was done, does not mean you did not have them previously AND, cannot produce more afterwards. It's not unusual for (tiny ones) the really small stones especially to eventually dislodge on their own (yes, you do wind up swallowing it lol, no harm done by that & will exit body painlessly via elimination). This is exactly what had happened to you when had CT scan done & it showed no stones in the glands, at the time the scan was actually done.

Next, you asked if "would leaving it destroy gland tissue or lead to a worsening of the condition?"

A) No, it will not destroy the gland & tissues of the gland. But, do realize you can still get & produce stones, get flare -ups (swelling due to stone blockage of duct) and also infections in the affected gland(s) due to stone(s) blockage (which you've experienced previously few times already). It can also become abscessed. The "worsening of the condition" as you wrote...It can continue to re-occur (which it has) thus becomes chronic (meaning, because it continues to happen).

B) There can be some cellular changes (whether you ever had stones in the glands or not)

that can occur which is why I suggested (if this keeps happening more & more frequently especially) getting a biopsy done of the affected gland(s). * You are not sedated for this type bx. via a needle aspiration (it's an out patient procedure...when bx. is done, you go home) *.

You want to make sure there will be no abnormal cellular changes going on there in the affected salivary gland/s (because you've had previous & ongoing periodic problems w these glands, is why). What this can (though not always) mean is the potential for a cancer to develop - is why reason suggested for the bx. . There are other ways to do a bx. of the salivary glands plus, it also depends on which salivary gland(s) is/are affected (needle aspiration is just 1 method (it's quickest & a less invasive means for the patient).

............

Sorry to learn, that NHS leaves you no options to pick & choose the doctor(s) & surgeon(s) you would feel most comfortable etc ; with. ***Only if you're still feeling quite uneasy & dissatisfied with the particular doctor, consultant, surgeon you're appointed & given (regarding the salivary gland problems, removal etc.) - then should you seriously consider

going ("could private for diagnosis and advice.") to a private consulting doctor, surgeon for 2nd opinion & potentially the one (who may be more qualified and experienced also) to do the procedure needed (if you DO decide to have it removed).

Hope this info helps (sorry not knowledgeable about the NHS in UK how it works).

ViperVixen

[Hidden in reply to ViperVixen]

Thank you so much. I'll take it on board and will see what the next appointment will reveal, if anything.

[jgelliss]

Hello ayayay , Strength and Sympathy for you . It can be very uncomfortable and very concerning to say the least . Here are a few things that can help you .

Wishing you better days ahead .

youtube.com/watch?v=ljM2Jol...(Not working as expected?)

sjogrens.org/files/brochure...

[Hidden in reply to jgelliss]

Thank you for your support and encouragement. It's sorely needed at present.

[jgelliss in reply to Hidden]

Your very welcome . Best wishes for a speedy recovery . Keep us up dated .

[Hidden in reply to jgelliss]

Hi jgellis and all who replied to me. My appointment, scheduled for the 13th Feb, has now been postponed to the 8th May. Obviously, they are too busy to bother with my "less important" condition. And even then, I have the feeling it is either a case of having the gland whipped out or live with it. The apparent lack of interest a year ago quite appalled me. There was no question of any particular tests in case it was something different than the "common, simple obstruction".

Do you, or any of you, know of any tests I could have done privately meanwhile, just to eliminate different possible causes? I am concerned as my father died of cancer somewhere in his throat and was mistakenly treated only for arthritis until 2 months before his death. I am not panicking, but why waste time when something can be done? And it is not just cancer I am thinking of.

Hope you can suggests possible tests.

Thank you.