I know you're in a lot of pain, but it makes me chuckle - "go suck a lemon" indeed! What a sour day you're having. (((((hugs)))))
I know you're in a lot of pain, but it makes me chuckle - "go suck a lemon" indeed! What a sour day you're having. (((((hugs)))))
...oops, wrong hat!
If you cry, I'll cry with you. I absolutely HATE mouth problems. They so depress me. Ethel, I hope you're feeling better soon.
The One And Only
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A friend had this and it was very painful. Hope the lemons work out and you feel better soon!
Life is uncertain ~ eat dessert first!
To love and be loved is to feel the sun from both sides ~ David Viscott
you poor thing! Yes.....I've heard you need to suck on really sour candy too.
Ethel, this sounds nasty, but hope the lemons, real or candy, work for you.
Ethel, my oldest DD has this problem and eventually had surgery to unblock them. Only they can get clogged again. I asked her what she did and she sent me this email of things she had found that may or may not be helpful. But you can try them before resulting in surgery. Her face swelled so bad it looked like she had the mumps. Sorry this is long, but hopefully it may help you or someone else. Glinda
Gratefully, I have never had any salivary gland problems after
RAI treatments. After reading so many letters on the subject,
my impression is that while the condition is permanent, the pain
and soreness almost always fade away, sometimes taking as long
as a few months or up to a year. The only long-lasting effect I have
heard of is the occasional flare up and/or dry mouth due to lack
of sufficient saliva production (or blocked salivary glands).
Fortunately, this typically doesn't happen too often.
There are a few basic elements involved in easing and preventing
salivary gland pain after RAI:
1) keep the saliva thin so that it will flow more easily
(drink lots of water)
2) prevent/remove blockages that form in the glands, whether it's from
calcification, swollen tissue or something else (massage, antibiotics)
3) prevent discomfort and damage to teeth due to dry mouth (neutralize
saliva with baking soda; use artificial saliva when necessary)
4) ease discomfort (massage, heat, mild painkillers or anti- inflammatories)
- Some people who know they have this problem have had success with
taking steroids and/or antibiotics prior to RAI. Augmentin seems to be
the #1 prescription for this. Note that salivary gland pain is typically
not due to an infection, and so antibiotics will usually not help.
- For dry mouth, Biotene is one of several lines of oral care products
(toothpaste, mouthwash, chewing gum, etc.) made specifically for dry
mouth. It is sold without a prescription.
- Massage, warm compresses (and/or ice packs) and ... yes, sour candies
(or fruits) are said to help, as does chewing gum (once you are no longer
radioactive, of course). Anything that makes you salivate will do the trick;
for me it's spicy foods.
I would also look into getting a professional massage focusing
specifically on the jaw and salivary glands. There might be some tricks
of the trade that would help. I would also speak to my dentist who
should have some suggestions. You might have to request that s/he do
some research, since it seems that most of them don't have much
experience in this area.
Below are some solutions that have appeared in this listserv in the
past, and links to additional information.
Good luck, and please let us know what you have discovered that
works for you.
According to Michael Tuttle, MD (endo at Memorial Sloan Kettering),
salivary gland pain comes from narrowing of the duct and also thickening
of the saliva. The duct becomes swollen and narrowed due to scarring
due to the RAI. "About all you can do is to stay well hydrated to keep
the saliva thin and to learn how to massage each gland toward their
respective ducts when they do swell. While the condition is permanent,
most people will stop having flare-ups in time and then the main concern
is good dental hygiene if your mouth seems more dry than usual."
Gary Clayman, MD, DDS (surgeon at MD Anderson) added at this year's
conference that when there is decreased saliva flow, bacteria tend to
ingress through the duct systems, causing or aggravating swelling.
In addition to the usual massage, warm packs and foods to encourage flow,
he said that while antibiotics sometimes help, he tends to avoid them.
He also recommends salt water rinses and massage "to flush out the
"How long [the problem] lasts depends on degree of damage; obstruction
to glands is relatively uncommon. The problem is due to damage to the
glands themselves. "
The most succinct advice comes from an ENT:
(Swollen Salivary Gland)
- Heat to gland 4 times a day
- Chew lemon 4 times a day
- Drink 10 glasses of water per day
- Milk gland 10 times a day
Sharon added that her throat specialist instructed:
- No caffeine
- No alcohol
- No smoking (avoid secondary smoke where possible)
- at LEAST 64 oz of water a day.
There is a very specific technique to massaging salivary glands, so if
you are not getting any relief, you may want to consider asking your
ENT or dentist for a demo. There is a very basic demonstration in the
Mandel article, linked below.
There's lots more info, mostly variations of a theme.
From Douglas Hoffman, MD, Ph.D. (board-certified ear, nose and throat
"Conservative treatment of chronic sialoadenitis involves the following
Staying well hydrated. I recommend that patients drink eight to 10
eight-ounce glasses per day of nonalcoholic, noncaffeinated beverages.
Avoiding any alcohol or caffeine is helpful.
- Stimulating the flow of saliva. I often recommend that patients suck
on sour candies, but this is damaging to the teeth in the long run. A
safer course is to chew sugar-free gum frequently throughout the day.
- FIRM massage of the parotid gland (no bruises, please) can also help
stimulate salivary flow.
- Using soothing warm packs when the glands are particularly tender.
- Watching for infection. If one or both parotids becomes very swollen,
tender and red, I worry about bacterial infection. A staphylococcus
species is the usual culprit. Antibiotics are necessary, and it is
imperative that the antibiotic kill staphylococcus. Penicillin,
ampicillin (Omnipen) and amoxicillin (Amoxil) are NOT appropriate
antibiotics." ....... http://www.doctorhoffman.com/xsjog.htm
NOTE: This last line is particularly interesting, since Augmentin is
the antibiotic most frequently mentioned by members, and it's in the
very family of drugs that Dr. Hoffman recommends against.
quotes from list members :
- "to ease the swelling and pain ... massage the area from the ear
lobe down toward your chin."
- "I have tried warm rice bag, Advil, and now Aspercream on it
[and gotten some relief]"
- "I had a plugged duct - left side only - that would become hard and
swollen when I ate.
It was so bad that I was finally sent to an ENT Doctor who froze the
inside of my cheek ... and then gradually opened the duct with smaller
to larger pins. It seems to have worked because they have not become
swollen or sore since. I can still feel a bit of tenderness on that
side of my cheek and if I "milk" it (by pressing my hand against my
cheek from a back to front motion) I can get it going quite easily"
- "after surgery the duct under my tongue swelled & was extremely
painful! The ENT under a local anesthesia cut along the duct & found
nestled away a very large stone! Removed it & have been fine since."
- "started having serious parotid gland problems ... So here's what I
[recommend]: Go to the Emergency Room. The doctor can usually
massage the calcified stone out.
They have done this twice successfully. Two other incidents I went
to my dentist who put a tiny needle type instrument in the salivary
gland itself to get it working.
I always massage my face well; start at the ear, and follow the gland in
a circular motion around your cheek. It does hurt but it is such a
relief when the stone comes out or the gland starts flowing again. The
last thing I did was see an ENT who gave me meds (Humibid) to increase
Then there was the calcium connection ...
- "saliva glands ... were blocked, sore, swollen [intermittently]....
I matched this pattern to taking (and stop taking) calcium
supplements .... It seems to correspond. When I take calcium, within
a few days my saliva glands start swelling up when I eat, hurting, drying
up. When I don't take calcium, within a few weeks, these symptoms
disappear almost completely (slightly dryer mouth than before ... but
otherwise ok). I stopped the calcium ... and have been ok since."
- "I have had a horrible time with my salivary and parotid glands as
well. I don't take calcium supplements ... but I have been seen in the
emergency room 2 times and 1 time in primary office and 1 time with
ENT, they all were able to massage out calcified stones.
Before my diagnosis of pap thyca I was diagnosed with hyperparathyridism
or hypercalcimia. Calcium was not being used properly in my body and
because of this I got kidney stones.
So I thought that along with the treatment RAI stimulated more calcium
deposits and thus the salivary problems. ... I now take humibid to help
stimulate salivation .... [use] dry mouth toothpaste biotene ... chew
sugar free gum to constantly make the salivary glands work."
Some other ideas I got:
- tape a little magnet north side up against the cheek.
This is a "medical magnet". I'll tell more if I do try this.
- Cypress essential oil for it's draining properties (used
for lymph drainage among other things)
- Lemon *oil* (which I do have and which is one of the
most affordable oils). I'll try that because the little
bottle keeps long term when compared to fresh lemons
or even the little yellow plastic container.
- Take lots of vitamin C.
As soon as any change in taste or saliva is noticed ....
use an ultrasoft toothbrush (recommendations below), stop using commercial
toothpastes and mouthwashes (anything with alcohol, phenol or whitening agents),
and use baking soda instead (straight from the box
as a tooth powder, and mixed with water as a mouthwash) ... floss once a day ...
alkalinize mouth w/baking soda/water solution (heaping teaspoon in 10 oz water,
as often as 4-5 times a day) ... use fluoride
to reduce cavity forming organisms (stannous fluoride protocol) ... 10 minute
application - reduces infection causing organisms ... if any dryness or change
of taste occurs, you're a prime candidate for
It's a good idea to have a fluoride treatment beforehand, but certainly
afterwards, if there is even a hint of a problem.
At MD Anderson, patients have a thorough dental cleaning before treatment, no
matter what form of tumor. Patients also should see their dentist within 4
weeks after RAI.
Sensodyne toothpaste (1st choice)
Arm & Hammer toothpaste
Biotene is equal to those and makes excellent products for any transient
dryness; it's usually the next the level after the above four. If mouth is
still burning or in pain, go to baking soda.
Oral B Sensitive
RECOMMENDED ORAL TOPICAL APPLICATIONS:
Orabase Soothe-N-Seal (mouth sores & irritation)
SaliCept (mouth sores & irritation)
Oral Balance (long lasting saliva substitute)
Gelclair (for burning sensations on tongue)
- when working with your salivary glands, you also need to open up
the flow from the lymph glands. (this is the part I'm not good at
explaining) Gently "brush" the skin from the collarbone toward the
heart, and then from the lymph glands in your neck (if you still
have some toward your heart.
- with a little more pressure, do the same thing over your salivary
glands on the underside of your chin (going from the tip of your
chin toward your throat).
- reach a finger inside your mouth along the bottom edge of your jaw
bone. When you get toward the back of your mouth (for me it's under
the jaw under my back molars) you may feel some pain, rub this back
toward your throat a bit.
- don't keep the hot compresses on too long because that is drawing
stuff in to your salivary glands, or if you do, be sure there's
somewhere for it to go to.
ADDITIONAL READING ...
http://health.groups.yahoo.com/group.../message/34153 .. RAI &
SALIVARY GLANDS - quotes from the experts (in case you need proof for
your doctors that there, is, in fact, a connection, between your
treatment and the pain you're having)
http://health.groups.yahoo.com/group.../message/21389 ..... Susan's
plan of action to ease her salivary gland woes (including some, um,
http://health.groups.yahoo.com/group.../message/13119 ..... salivary
glands: Nick's collection of doctors' letters
http://health.groups.yahoo.com/group.../message/29741 ..... fried
taste buds & burnt tongue (compilation)
http://health.groups.yahoo.com/group.../message/45644 .. neutralizing
saliva and relieving weird taste buds (hint: baking soda is your friend)
- "Radioactive Iodine and the Salivary Glands" .... (great article on
salivary gland problems, pain and treatments by Susan Mandel, MD & Louis
Mandel, DDS) .... http://www.medscape.com/viewarticle/456955
Biotene line of artificial saliva ...
Ethel, I have salivary blockage -- I have dealt with it all of my life. They've done biopsies and done lots of tests -- with no firm conclusion other than they suspect I have stones.
I know just how excruciating it can be! Sometimes the side of my face swells up like a chipmonk -- about the size of a stick of butter. I usually massage my face with my hand and sometimes use hot compresses. Once the blockage is dislodged, my mouth tastes really salty for a while.
At one time they were trying to rule out Sjogren's syndrome -- which can affect your salivary glands. Sjogrens is untreatable, not curable, and won't kill you -- so I decided there was no point in further testing since it really wouldn't matter. You may want to ask your doctor about it, though. It's been 15 years or so since I went through the Sjogren's drill.
I've sucked on the Lemonheads myself -- but I can't seem to get the blockage to appear on command!
Good luck -- and feel free to pm me if you want to "talk" about it some more.
Ethel, I know there is lots of information on this thread, but I think every situation is probably different.
I personally would suggest you consult an eye, ear, nose and throat specialist.
My dh had a similar thing several years ago. His was determined to be stones in his salivary gland and was quite painful. You could even see the swelling under his chin on the side.
He had surgery to remove the entire gland with the stones and has had no problems since. It turns out you have several glands that do the same thing, and it is not a problem to remove one.
Good luck and hope you are better soon.
(Bugga in OK)
"Whether or not it is clear to you, no doubt the universe is unfolding as it should." Desiderata
ok, talked to my boss about this. He suggests the sour candies also for up to a week. If you don't have any relief by that time, you'll probably need to see an oral sureon about removing it.
He said if you have a stone, if it comes out on it's own, that's the time that it's painful. I guess we always see people when they are past that point and they just need us to get it out!