LymeNet Flash: Large Suglingual Swelling

This is topic Large Suglingual Swelling in forum Medical Questions at LymeNet Flash.

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Posted by suttles (Member # 5984) on :

I have this large swelling under my tongue.
It started over a year ago and I have seen two different ENT Drs and neither one could tell me what it was.
The second one did the ssa, ssb, ana tests. They were ok. This has some thick stringy mucus and it seems to be getting larger. I have to be careful eating now and my MD is the only one that seems to be concerned.

It never goes down and does not hurt. It is ugly and the other side is swollen also but not as bad. It starts from the middle of the piece under my tongue and goes all the way back and part of it lays over my back teeth.
I don't know where else to go or if this is a lyme thing or not.
I hope I don't get lost in the messages.
Suttles

Posted by Corinne E (Member # 4670) on :

Suttles,

I have it too, have had it for about 3 years right now. There are so many things out of whack with me right now, I put them down to lyme.

I sure hope someone else can answer this.

Corinne

Posted by dontlikeliver (Member # 4749) on :

Have you tried the dentist? Somtimes they are more up on mouth stuff than MD's.

DLL

Posted by treepatrol (Member # 4117) on :

ranula

[This message has been edited by treepatrol (edited 13 April 2005).]

Posted by suttles (Member # 5984) on :

Thank you for the picture.
Mine is very simlar but my other side is looking more that way.
Mine started out looking like a baloon under the skin and would roll around now it is just a large non shaped swelling full of the mucus.
IF mash around and the mucus comes out to where I start getting more of it to swallow then I get the flu like achiness.
The firt ENT didn't pay any attention to it the first time it was much smaller and I figure he was just blowing me off. Nothing to worry about those are key words that you are thare for nothing. It had already been there for a couple of months before I showed it to my MD he was very concerned. Well after it grew quite a bit I called the ENT office and ask when does this swelling get large enough to justify seeing a Dr they immediately called me back and made a appt. He then gave me Bidex and I felt awful I had a bad taste and the flue like feeling got real bad. I also pressured him to give me answers this time. My daughter would not drink after me and that is when I thought maybe I have something I could give someone else. I have had EBV, and active CMV and I told him he blew it off but I have found plenty of places on medical web sites that these virus are in these type of secretions.
Now it is just I have to be careful eating. If I go back I am going to take those articles.
I wish I knew how to use the digital camera. Even my phycharist looked at it and said wow and mentioned me taking pictures and putting it on the web.
Thanks you for letting me see this it is very helpful.

Suttles

Posted by treepatrol (Member # 4117) on :

up

Posted by suttles (Member # 5984) on :

Does the swelling you have hurt, or have any of the mucus in it?
I don't mean to be gross but the mucus mine has is clear and does not smell but if any of those meds like the Bidex makes the mucus start comming out I get that awful flue feeling and a bad taste like when you have a virus.
The second ENT I went to I thought on the first visit was going to be ok. He immediately said my mouth was dry I hadn't noticed that. He started talking about joining a Sjogren's support group. When he did the tests like the ana, and ssa, ssb, we had discussed that even if they were normal that didn't mean you couldn't have SS but then the office called and said they were normal that I didn't have ss but to keep my next appt.
Well I did and he said the tests didn't show ss and that I should see a rhumie.
I don't know why he would say the tests would not prove ss then change.
I did not know then that I would have a positive IGG western blot for lyme.
If I ever get well enough I am going to have to do more educating to some of these people that call thereselves Drs.
Suttles

Posted by Corinne E (Member # 4670) on :

Wow Treepatrol,

Those pictures and others I looked at one renula sight are exactly what I have been experiencing for a long time.

I get them on both sides of under tongue on base of mouth. When really swollen spill out over teeth, maybe that's why I talk with a lisp sometimes. I experience 2 lyme cycles, one is I think b/c of bartonella and that is when these lumps really swell, turn blue/black, really ugly looking, I also get ulcers on top and under tongue and on these swellings.

I just assumed they had to do with lyme. Thanks all.

Corinne

Posted by Corinne E (Member # 4670) on :

re anulas:

Mine are really bad right now. I also have some other bart symptoms cropping up.

I found this info from a med site:

Cervical ranula may appear similar to the following:

Thyroglossal duct cyst
Branchial cleft cyst
Cystic hygroma
Submandibular sialadenitis
Intramuscular hemangioma
Cystis or neoplastic thyroid disease

(IT'S THIS PART I FOUND INTERESTING) Infectious cervical lymphadenopathy (Epstein-Barr virus [EBV], catscratch disease, tuberculosis)

Hematoma
Lipoma
Laryngocele
Dermoid cyst

Corinne

Posted by docdave130 on :

the swelling on the first picture is mucocele, it usually happens when you bite your cheek. it destroys some of the s,all salivary glands in the area and it fills under the tissue with saliva. it can be lanced or enuclated and removed never to return.
the second picture can be several things.
from your symptoms and saliva production it sounds like you have a sublingual(under the tongue) sialolith. this is basically a calcium deposit stone that calcifies in the salivary duct that exits into the mouth.
the sublingual gland exits at 2 points on either side of the flap of muscle tissue(frenum) under the tongue.
the best thing to do at this point is the go to either an oral pathologist or an oral surgeon that is very good. they can run a test called a sialogram and inject dye into the gland. once in they take xrays and see if the flow is normal. if it is a stone it can be removed under local anesthesia by the oral surgeon, healed in 2 weeks.
stones are extremely common in lyme disease and can locate anywhere in the body.
kidney,gall bladder(most common),salivary glands, tear ducts and others.
i would start with the oral surgeon and go from their.
please email on your progress and dx. i can help explain things if you need it.
KISS keep it simple stupid, try the simplist thing first then go from there.
the doc can palpate the gland and sometimes feels the stone.
Also these stones can occur in the parotid glands that exit above the upper first molars, giving mumps appearance, and also submandibular glands which are under the jaw near the edge of the jaw bone.
hope this info is helpful and sends you in the right direction.
docdave
[email protected]

Posted by docdave130 on :

up

Posted by Corinne E (Member # 4670) on :

Hi Dave,

Boy I am grateful for your explanation, b/c trying to understand all the medical jargon right now is next to impossible. I work in a hospital in med ed department, lots of med dictionaries, but didn't have my special expanding glass (lymie brain right now can't think of the word) - ah magnifying glass to read print with me.

Everything you explained about fits me to a tee. Is that why I have so much saliva? My tongue burns a lot too. Taste buds are shot.

I guess I have to go under the scalpel again. I laugh about my senses. Major knife surgery for rt eye last summer (low-angle glaucoma in both eyes), cataract removal in same eye 4 weeks ago, cateract removal in lt eye this summer. Half deaf, possibly more in left ear, and a small kind of tumour growing in left ear just as you enter ear part, sense of smell gone again (prednisolone/vigamox), tips of my fingers tingly and numb, warm water hurts my hands terribly, feels like scalding water. I do have reynaud's though.

Seeing a dental surgeon or oral surgeon is quite a problem here, probably can't get an appt for about a year or more. Why does the swelling go up and down? It never goes away but can really swell up at times. Does too much saliva hurt me? Is it okay to leave it until I see surgeon?

Cave76,

You're right. I would never let my old doc see it. He would probably lance it right there, forget the testing to see if I had a calcium stone or what was really the problem, and then send me home with some cox-2 inhibitors. Or just tell me there is nothing wrong with my mouth, it's all in my head. In that he would be right though. That would the only thing he would be right about.

I am moving into Vancouver in July, will get a new family doc there, hopefully one that will work with me and Dr. M.

Is this dangerous, docdave, to let it go for awhile? Maybe Dr. M can get me to see someone sooner.

Thanks for all the help. I always thought my mouth was normal.

Corinne

Posted by Corinne E (Member # 4670) on :

up

Posted by docdave130 on :

the swelling goes up and down due to the amount of infection in the duct orifice or the position of the stone.
it is a minor operation, but should be done right away. loss of saliva means loss of digestion, acid reflux and gi problems.
also there is a posibilty that is may be a tumor, small but possible. if it is it must be removed asap.
call the oral surgeon and tell them it is an emergency, they will see you within the week, explain the problem, and the lyme and they , by law must see you as an emergency within 24 hours.don't tell them its been there awhile, just that it started getting larger within the week.
and yes MD'S DON'T KNOW A TONSIL FROM A TOOTH SO DON'T WASTE YOUR MONEY WITH AN MD ON AN ORAL PROBLEM GO TO A DENTIST OR ORAL SURGEON FOR EVALUATION.

Posted by Corinne E (Member # 4670) on :

Thanks Dave,

Will call tomorrow. Am off to bed, have tow ork tomorrow. Will let you know what's what.

Corinne

Posted by suttles (Member # 5984) on :

My sublingual does not look like that.

How can I post a picture?

Mine is just a large swelling with no shape and it is full of mucus that is clear.
It does not smell but has a bad taste.
It is now on both sides.
There is nothing hard in it like a deposit.
Suttles

Posted by Corinne E (Member # 4670) on :

Suttles,

what I think DaveDoc means is that you can't see or feel the stone/calcium deposit. Now that I have seen some other photos and had a look at some of my kids' mouths, I now realize that what's in my mouth is not normal.

I think the only way I will get seen quickly is if when the lumps are huge, go to a local clinic and get doc on call there to call and make an appt. Of course, if I go to my dentist, he will charge me quite a bit to just look at my mouth and then will make an appt. for me.

Suttles, I will discuss more with you tomorrow as I am off to bed, so tired.

Oh, DocDave, would TONS of saliva cause a yest infection in my mouth to worsen?

Corinne

Posted by suttles (Member # 5984) on :

I have seen two different Ear Nose and Throat Drs.

They do not know what mine is.
The last one talked to me about having Sjogren's and mentioned me joining a support group and if I had seen a Rhume.
Then he did a ana, ssa,ssb, and sed.
We discussed that those tests being normal did not mean you would not have SS.
They called me a day later and said the tests were normal that I did not have SS.
I saw that Dr for the follow up and he just said it was probable part of what ever was going on with the fatigue and immune stuff.
I did not know then I would have a positive western blot.
The first ENT mentioned the ranula but said it was not that. He was very confused.
So I have seen them both two differnt times.
My MD was concened about Cancer.
I don't smoke or anything like that.
My dentist said go to ENT.
Even my psycharist looked at it and thought it was really weird looking and mentioned putting a piture of it on the internet.
I just don't know how to do the digital stuff.
Sometimes it interfers with eating when I swallow.
It is nothing like anything I have seen on any oral web site.
Suttles

Posted by Corinne E (Member # 4670) on :

Suttles,

How are you doing? When I showed my old doc what my mouth looked like, he just passed it off as nothing Said more or less, so what!!

As for eating and swallowing, my problem is that I am always biting my tongue. This week I really bit myself badly, I put a huge gash in side/end of tongue, really bled for a long time and was very sore.

I have trouble chewing food, so I am end up eating casseroles/soups, something that doesn't require a lot of chewing. My favourite is Thai food. It seems like my tongue is way... too big for my mouth, at times appears thick.

This week has not been a good week, am very tired and out of it today. Also very depressed/very quiet. I had my hair cut today by someone who I have been using for the past year, she asked if I was all right, said I was very quiet (I am usually very talkative, laugh a lot) and just didn't look right. My brain and mood is just foggy and black right now.

I also have black spots on lips, some get darker at times. I am a smoker (a light one - 3 a day). It is probably lyme related as when I was on abx, the swelling under tongue went down and black spots on lips faded and eventually went away.

If I can remember to call dentist on Monday and see him, I will let you know what he says. Have a nice weekend.

Corinne

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