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Old 10-02-2005, 06:09 AM   #1
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Salivary gland surgery follow-up

Hi,

I'd been posting actively the last few months about a problem I've been having and wanted to follow-up on it because I really appreciate it when others post the resolutions to their problems.

I've been suffering with pain in my right lower jaw since last May. Not sure what it is. Considered tooth problems, TMJ, osteomyelitis but ENT thought it was my submandibular salivary gland. After a CT scan and x-rays were normal, I decided to go ahead and have the gland removed. It was no fun, but I think I made the right decision. The pathology report came back and showed that the gland was chronically infected (I lost count of how many antibiotics I have been on).

Surgery was three weeks ago and I am still healing. Still have some pain in jaw, but it is less than what is was. However, now I have postsurgical pain and swelling. I can eat now without pain which is a real blessing. The best thing is I don't feel sick anymore. No fevers, night sweats or nausea and my energy level is coming back. The only downside is I still have some jaw/tooth pain - I 'm hoping it's referred pain from the surgical site but only time will tell. It doesn't hurt unless I touch it and it feels like my jaw is bruised, although it looks fine. Most days it's managable with Tylenol, which is an improvement. I still worry that there may be a hidden tooth issue or even osteo, but I think the improvement in how I feel is a good sign, especially as I have been off antibiotics for a month now.

Thanks to those of you who responded with your own salivary gland surgical experiences as well as those suffering from osteo who helped me understand more about this disease.

 
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Old 10-02-2005, 09:52 AM   #2
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Talking Re: Salivary gland surgery follow-up

Hello!!
Great news to hear that are feeling better and have found some relief by having the gland removed.
I have had my naughty 1st molar removed that had a failed rc and still feel ill all of the time so I am scheduled for a proper physical and blood tests and then possibly the immunologist for further more specific tests. The dr wants to rule out dental bacteria that could have moved into my heart and lungs because I am having symptoms of pneumonia now as well. My dentist who extracted the tooth, doesn't care about anything as long as the area is healing nicely. I complained to him about submandibular pain and glandilar pain but it all fell on deaf ears. I am glad that I have found a dr. who is willing to try and figure out what the problem might be.
Reading about your progress has put a smile on my face My fingers are crossed so that you are symptom free again.
Take good care,

 
Old 10-02-2005, 10:50 AM   #3
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Re: Salivary gland surgery follow-up

CT Mom, thank you for letting us know how you are. Sometimes you must go with your gut feeling and I am happy that you are doing well. Time will tell about the other pain but at least this one is now over with. I wish you well and a very speedy recovery. Take care.

Traumatized, I am glad you found a doctor who is willing to try and find out what is wrong and you are getting needed tests. Please get well soon, we are all rooting for you.

I still am undergoing tests and still have a great deal of pain in jaw. I have been taken off antibiotics as one caused me hives and the other didn't do a thing.
I'm trying to stay positive but it does get me down.

 
Old 10-02-2005, 02:34 PM   #4
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Re: Salivary gland surgery follow-up

Hi all CTMOM did you have ear pain ever with the jaw pain? glad you are feeling better

Miss L

 
Old 10-02-2005, 04:09 PM   #5
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Re: Salivary gland surgery follow-up

Yes, I definitely had ear pain with the jaw pain. And that ear was constantly blocking on me too. It still blocks occasionally but I've had absolutely no ear pain since the surgery. Keeping my fingers crossed and hoping this jaw pain goes away!

 
Old 10-03-2005, 01:24 AM   #6
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Re: Salivary gland surgery follow-up

Hi again ive been wondering myself if i have a problem with my submandibular gland as i get pain in my teeth at the bottom left side tht is also in my jaw area my ear is sore and blocked up and under my tongue feels swollen as well as feeling like the side of my tongue is dry i dont feel any lumps or anything does this soung simular to how you felt? i also a very tired the ear pain is more or less constant and dull but becomes worse after i eat. i feel tired and run down last year i had a block gland on the right but it went as quick as it came i have been diagnosed with tmj for the last 9 months but the pain was on the right and these symptoms or on the left i also suffer from gerd and this seems to make all symptoms worse what do you think?

Miss L

 
Old 10-03-2005, 01:10 PM   #7
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Re: Salivary gland surgery follow-up

I'm no doctor but this sounds exactly like my symptoms - pain in ear, swollen feeling under tongue, pain under back molars (but not in the teeth themselves), sometimes a sore throat on that side, and a most annoying symptom of feeling like my tongue is swollen and dry on that side of my mouth only. Believe it or not, the last symptom is what drove me crazy because I was constantly aware of it. I questioned TMJ as well, but it really didn't hurt in the joint and my symptoms were relieved with eating and drinking. Also, I felt best when I first woke up in the morning and with TMJ I always had my most pain then.

I too had a blocked gland on this side a few years ago. I thought it cleared up quickly on it's own. The Drs. think that's when all my problem started and the infection began. It never really cleared up and just festered under control until recently. Do you have any swelling under your neck when you eat? I didn't at first but it developed gradually over time and for a long time didn't even hurt unless I touched it while it was swollen. It would go down quickly when I stopped eating so it wasn't that noticable. My salivary ducts were damaged but not blocked so I didn't have the classic symptoms of large, swollen painful glands when I eat. My x-rays were normal as well, but clearly there was a problem. You might want to consider seeing an ENT - and they don't all like to deal with salivary gland issues so ask before you make an appointment - I was passed from one ENT to another to a third before I saw the one who was really interested in my symptoms. He was "the neck guy" in the practice. Also, have you had a full dental check? The nerves in this area are so funny and refer pain like crazy.

Hope you figure out what's going on soon. Let us know!

 
Old 10-03-2005, 02:33 PM   #8
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Re: Salivary gland surgery follow-up

I know I sound like a broken record but I had so many of the same symptoms, had salivary gland removed, swelling, teeth hurt, ears bothered me, swollen face and I went to so many ENTs. Even though throats are their business, none diagnosed me. Finally found out that a Rheumatologist was the one to see and the test they did to confirm it was a lip biopsy. My blood work was normal. Throat was so dry, and eyes also, especially at night. Anyhow, Sjogren's is quite common, especially in women, and often misdiagnosed. It is more common than Lupus yet many never heard of it. Sometimes your dentist will spot it, sometimes an optomotrist. It takes most people 6 years and many doctors before you finally find out what it is. I just mention it in case there are others with these symptoms and you will save a lot of time if you go to a Rheumy and ask for a Sjogren's test. This may not be your problem at all, but again if it is, it is so frustrating trying to find out what is going on. A lip biopsy is the best test.

 
Old 10-03-2005, 02:57 PM   #9
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Re: Salivary gland surgery follow-up

Hi there you mention your tongue nfeeling dry on that side mine is exactly like that also the swellin i got was on the other side of my face but maybe i had a gland problem full stop. I have also developed a very small swelling like a lump just above the floor of my mouth on that side wondering if its a stone because it moves. i see an oral surgeon for my TMJ and have told him all this but keeps telling me its muscular im affraid its cancer? but ive had it for a year so im sure my symptoms would be worse.

when you said your tongue on that side feels dry is it like were your lingual tonsils are at the side thats wre mine is and i also feel friction inside my mouth on that side was your jaw or that side of your face tight feeling mine is and funilly enough one night i was sitting and i put my chin on my chest and it was sore in the gland area the side of my tongue also burns and its so anoying i have had xrays and im having dental wotk done but have had no dental work done on this side yet im rambling i know but i feel like im maybe getting good info from you. also my ear and mouth pain usually dont start until i have my breakfast then it all beging the ear pain and blocked feeling is there all the time was yours anyways give me your thoughts and im glad you get to the bottom of yours
thanks Miss L

 
Old 10-04-2005, 10:31 AM   #10
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Re: Salivary gland surgery follow-up

I'm not sure if I'm describing this correctly. The inability to describe the symptoms is one of the most frustrating things - the doctors looked at me like I was crazy. Anyway, basically I had a sore, dry feeling on the side of my toungue and it seemed really irritated by my teeth on that side, even though I didn't have any recent dental work done. I also have a dry burning pain in the back of the throat to the front of the tonsil area. My blocked ear symptoms were not constant but I was unblocking them all day long.

If you have any concerns about cancer, ask for a CT scan. I had one and it put my mind to rest, at least on that issue.

The lump under your tongue really does sound like a stone and you may be lucky - it can probably be easily removed. Please see someone - your dentist may deal with this. Otherwise consider an ENT or oral surgeon. They can take an x-ray of the floor of your mouth (different from tooth x-rays) and it will show up clearly if it is where you describe. Also, Sae offers some good advice about Sjogrens. I didn't have symptoms of dry mouth or eyes so it wasn't considered a possible diagnosis in my case, but head/neck symptoms are so difficult to describe because there's so much going on in a small space with teeth, glands, nerves, etc...that getting an accurate diagnosis can be difficult. Good luck to you!

 
Old 10-04-2005, 11:54 AM   #11
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Re: Salivary gland surgery follow-up

Sae,

You don't sound at all like a broken record (although I think I do re: these salivary gland issues.) Anyway, I appreciated all your input when I was trying to figure out what was going on. I am three weeks out from my surgery and the Dr. says I'm healing well but I still have real pain in my jawbone area (like someone punched me there.) Do you remember this after your surgery? I also have some neurological damage but am assured it's just temporary. Just seeking some assurance that I'm normal.

I did look into Sjogren's as a diagnosis, but didn't have the dry eyes. I wear contacts so I assumed I'd know. Also all my mouth symptoms are on one side - I assume yours were bilateral? Anyway, I appreciate your input and will definitely keep Sjogren's in the back of my mind if my symptoms don't improve or progress in any way. Are there any other symptoms to be aware of besides dry mouth and eyes? I don't have a rheumatologist and my primary care doctor is not big on referrals. I have an eye appointment next month. Is this something an eye doctor could screen for as well?

 
Old 10-04-2005, 02:03 PM   #12
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Re: Salivary gland surgery follow-up

Yes, your eye doctor can do a slit-lamp exam and a Schirmer test. My mouth and throat were very dry. Some of the other symptoms were hoarseness, a lot of gland pain moving from one side to the other. My teeth (all capped) started to go very quickly, much pain under teeth. Decay started under all caps. You need to be meticulous about your teeth and using Gel-Kam from drugstore is a good idea. They don't keep it out but you can ask for it. Fatigue is another symptom. It can affect other organs in body. My throat area healed but occasionally I have a twinge of pain, which I think my be adhesions. It is so difficult with so much going on in the throat area.

If there is a Sjogren's support group in your area, I would suggest you visit and talk to people. This is how I first came to conclusion and then was able to find a doctor who knew about Sjogren's and was able to do lip biopsy. A previous blood test was negative. Symptoms started out slowly and then progressed. Drink a lot of water as it is good for glands or stones. Avoid allergy pills or any pills that are drying.

I wish you well and keep in touch because I would like to know how you are doing.

Regarding jaw pain. I did have jaw pain, not necessarily from the surgery, don't know if it was from the teeth. I felt like someone punched me in jaw (like you). All teeth except for 10 have been pulled. Dentist put bone graft in when he pulled a wisdom tooth (didn't ask me, just did it). It got infected and now I am testing for osteomyelitis. Jaw is very painful - one test came up positive, another negative, so more tests. Bone graft was removed but I have terrible pain yet. If next test is positive they will do debridement and IV antibiotics.

 
Old 10-04-2005, 03:02 PM   #13
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Unhappy Re: Salivary gland surgery follow-up

hi ctmom im pleased the surgery went well for you. here`s to the road of recovery
just like u i have been sufferig for A while. i have noticed a dry cheek inside every morning always the left one does`nt matter what side i have been laying on its always dry. sore throat on the left but didnt look sore to the docs, with a feeling of swelling under the tongue, but when i look its not swollen at all. the tongue pain on th left and jaw pain is quite painful at time but the oral surgeon couldnt see anthing wrong. he did an ultrasound of my salivary gland and said it was good then did and xray and said my lower wisdom teeth needed to come out. had them out and still the problem persist. but if i stand and look at myself in the mirror my left side under the chin sticks out more than the right my husband has noticed it too. the sub gland does not hurt to touch.

PLEASE can u advise me

 
Old 10-04-2005, 03:54 PM   #14
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Re: Salivary gland surgery follow-up

Oh, I don't know how much advice I can give as I'm still muddling through this mess myself. Although I think the surgery has improved things, I'm not sure I'm "cured" by any means. Anyway - your symptoms sound a lot like mine. Isn't the swelling under the tongue and sore throat on one side the most annoying thing? I don't know how many doctors have looked at me and said everything looks normal. It sure doesn't feel normal!

Anyway, in terms of advice these are the things I've considered/am considering as causes - a tooth problem, bone infection, TMJ, salivary gland stones, salivary gland inflammation and Sjogren's.

Some of these are easier to rule out than others but no tests are 100 percent. You've already done what I did, which is start with my dentist, and he didn't find anything. Now you have to figure out what avenue you want to pursue next - oral surgeon for TMJ eval., rheumatologist for Sjogren's, ENT for salivary issues or infectious disesase person for bone infection. An obvious thing would be to start with your primary doctor, but mine I found was woefully ignorant on all of these issues (and admitted it), so I was quickly passed off to a specialist. Even so, he would be able to order basic blood work to get you started and perhaps a CT/x-rays/ultrasound/bone scan of the area to take along with you. The process seems to be very much a trial of exclusion...try on this diagnosis for a while and treat it and see what happens. Very frustrating.

I can't believe so many of us suffer from these same symptoms just on this forum and how hard it is to get a good diagnosis. I'd love to hear from more people who had these symptoms and were diagnosed and treated successfully. Good luck to you and let us know how you do!

 
Old 10-05-2005, 12:35 PM   #15
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Re: Salivary gland surgery follow-up

Stumbled across this after an absence of a few months and will add my experience.

For years I had a swollen lump in my neck under my jaw bone. Family physician said it was a swollen salivary gland and recommended sucking on lemon drops. As the years passed, the lump got more painful and at times I had difficulty swallowing.

Visited an ENT who first put me on antibiotics, then on steroids. Lump remained and was still painfull. Finally he decided that it needed to be removed. After the surgery I had some relief, but about 3 months later all of the symptoms came back. More CT scans, and it was determined that I'd developed a lump of scar tissue. Surgery again. Three months later, same symptoms returned - sharp stabbing pains on occasion, sometimes difficulty swallowing, and sometimes nothing at all.

Back to the ENT, who said that he wasn't qualified to do a third surgery, and I was sent to the professor who had taught him. That guy sent me to a maxillofacial surgeon who said that he could do the third surgery. A friend of mine is a general surgeon and when I mentioned all of this to him he said that a third surgery would be very difficult to do because the nerve that runs through the area would be almost impossible to see at this point and I would run a risk of permanent paralysis. He suggested injections of steroids into the site.

Back to the maxillofacial guy asking if he would try the injections with me first. No problem (I liked the fact that he was flexible and not insulted that I had asked someone else). The first injection gave me relief for about two weeks. Had another injection which lasted for three weeks. I'm now at 6-month intervals, but I do occasionally have stabs.

Hope I've helped some.

 
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