Will the real biophysiopathologicoculprit please stand up?

May 22, 2009 7:12 AM

For the last ten years or so, I've had chronic pain and mild swelling in (what I think are) my parotids, the largest of the salivary glands. However, my docs beg to differ (sometimes with me and often with each other, it seems). Help me figure out what hurts.

HISTORY

Over the years, I've consulted a number of doctors about this pain, and, seemingly, no consensus can be reached among them. It would be one thing if the issue was whether or not the pain or swelling was considered medically significant in their opinion, but it seems that the problem receiving the most attention is determining whether or not it's actually my parotid glands that are the site of my complaint at all. Some feel it's simply neck lymph nodes that remain chronically inflamed, and for this there's not much they can do. Others feel it's the parotid glands and refer me along to various specialists. Who invariably state that it's just a couple of swollen lymph nodes. And so on. It's like a giant sinkhole of confusion for me.

What I'd really like to determine is what the site of my discomfort is called, definitively, so that I might visit a specialist who is comfortable diagnosing and treating this particular issue. So far, I seem to be hearing "lymph nodes" from an ENT, an Allergist, and my GP ...and "parotids" from an Immunologist, one Dentist, and another MD. That, and "twisted sphenoid bone" from one Doctor of Oriental Medicine. The parotid folks referred me to the ENT and the Allergist for treatment; the ENT and Allergist feel it's not a parotid/salivary issue but an issue with chronic lymph node inflammation, probably due to immune system/autoimmune disorders (which I have). The doc who believes it's the sphenoid bone is out of the picture because I no longer live near his practice and cannot seek his treatment.

DESCRIPTION OF COMPLAINT

The pain/mild swelling is bilateral, with the locus being exactly behind my earlobes in the "hollows" there, extending about 1 cm inferior to that area, and deep within my neck. The pain is best described as a constant and tiring dull ache that feels best when I'm pressing in on it with significant pressure. At times the pain's hard to ignore, other times it's kind of in the background. Visually, you don't notice the swelling, but it is palpable as a hardness distinct from the surrounding areas of my neck. There is no swelling or pain on my face in the mumps-y area in front of my ears, as seen in this photo of parotid swelling.

VISUAL COMPARISONS

Here's a diagram showing a drawing of the location of the parotid glands. Here's another. And another. Two more. And this one. Lastly, here's a cadaver image of the gland. As you can see from each of the images, the location of the parotid gland may or may not include the area behind the earlobe, depending on the source material. Some medical texts indicate that there is no parotid tissue beneath the earlobe, others seem to indicate there is.

For comparison, here are the approximate locations of lymph nodes of the head and neck. Unless I'm not finding the right images, the spot that bothers me does not appear to be a lymph node.

OK

I know YANMD, etc., but...

Any thoughts as to whether this is likely to be a lymph node issue I'm dealing with or a parotid gland issue, from your own perspective? Any similar experiences? I believe this problem began in earnest around the time I got a whole slew of vaccines I was required to get last minute prior to a year spent living in Asia. I was majorly sick in the weeks leading up to my departure and on and off thereafter.

Suggestions as to what kind of testing I should ask for regardless of what the site of the pain is actually called? I'm kind of at a loss and more than a little frustrated not to have made better headway in figuring out how to deal with this yet.

FYI

I'm in my mid 30s, female, I get sick way too often with frequent sore throats/colds (stupid tonsils), and I've got hypothyroidism, Hashimoto's thyroiditis (autoimmune), fibromyalgia, CFIDS, hypersomnia, among other diagnoses I'm not sure whether to trust (IBD, cyclical Cushings, dysbiosis), and, according to my OMD, "several viruses in your blood." My EBV titers are sometimes wacky; sometimes normal. Haven't had much other viral testing. Other usual bloodwork comes back normal. My C-Reactive Protein test (?) came back high suggesting significant internal inflammation (?).

I've been treated variously with prednisone, flonase, anti-histamines, antibiotics, and anti-inflammatories for this complaint over the years to no avail. Acupuncture and herbs for this issue have helped less than I'd hoped, so far. I've been ignoring the pain for the past three years or so, mostly because I wasn't getting anywhere with the various doc visits and the prescribed treatments. Money has also been in short supply at times, making follow up even harder. But I'm really curious and a bit scared about this, since it hasn't gone away or receded at all over the years. Yeah, it's time to figure out what's up.

Thanks for reading this crazy long, involved post.

posted by blisskite triplicate to health & fitness (10 comments total)

Do you have a cat? Toxoplasmosis is known to hit the lymph nodes around there. I think a CT would clear this up, but IANAD(yet), so take my advice with a grain of salt.
posted by greatgefilte at 7:25 AM on May 22

Asking the internet to discern where this is happening on you, especially with no photos of you, is probably not going to be useful.

As an aside, have you had the mumps? Remember which part got big and painful? That's exactly where your parotid glands are.
posted by methylsalicylate at 7:27 AM on May 22

I have 6+ years of chronic bilateral swelling, +/- pain, of the parotids, confirmed via MRI. Swollen parotids are most definitely palpable and visible on the face. When they get bad, they are so obvious that strangers looking at me have felt compelled to comment "gee, your face is really uneven, isn't it?"

According to the ENT who ordered the MRI, I just have more parotid cells than normal, all of which are bigger than normal. No one seems to know why or how to shrink them back down. Originally, I had thought it was due to TMJ disorder (which I have) and was being treated for that for a long time; the TMJ specialist thought the swelling was muscular. Do you have any issues with excessive or deficient amounts of saliva? One way that they finally figured out that the swelling was my parotids was that the doc tried to "milk" the glands and no saliva came out.

Although there are 2 lobes to the parotids, and perhaps you only have involvement of the deeper lobe rather than the more superficial one, it seems unlikely that any kind of systemic autoimmune action on the gland would attack just one lobe, especially given the bilateral involvement. Also, it doesn't sound to me like the area you're describing is really lining up with the location of the gland (especially the hollows behind the earlobes... while feeling my own parotids right now, there is definitely tissue directly inferior to the earlobes, but nothing behind. Of course, anatomy varies wildly among individuals so that might not mean anything for you.).

Get some imaging done if you can. That's really the only way to know for sure.
posted by tentacle at 8:00 AM on May 22

As you have access to several types of doctors, I would also include an evaluation by a neurologist.

Cranial nerve disorders (cranial nerve VI) has been associated with pain, and similar to you, patients may be evaluated by several doctors (dentists, GPs,), and is often misidentified until a neurologist looks for this.

Because it is bilateral pain vs pain one side, it may not be a cranial nerve. (I hate when people use google as a source, nonetheless, this cites that bilateral pain can occur in association with cranial nerve VI disorders).

Even if the neurologists eliminates the nervous system as the cause of your disorder, the right neurologist should either be able to treat or refer you to someone who can treat pain. All I am saying is that I think it may help to have a neurologist as part of your medical team.

Good luck.
posted by Wolfster at 8:44 AM on May 22

Do you have an eating disorder?

Diagnosing bulimia nervosa with parotid gland swelling
posted by aquafortis at 9:37 AM on May 22

I had swelling of my salivary glands because I was allergic to Nasalcrom. It's now a contra-indication, but at the time no-one could figure out why I had swelling. n-thing what tentacle said - you really can see the swelling quite well. They're also incredibly painful when you start to salivate, if you can. It's possible to "milk" your salivary glands by gently rubbing your hand from just behind your ear, towards your jaw. If you get any relief or an increase in pain while doing this, it's probably your salivary glands.

I would suggest going to your ENT and seeing if s/he can do a needle biopsy of your salivary glands. If nothing else, the test could show if there's inflammation of your salivary glands or not.
posted by fiercekitten at 9:49 AM on May 22

have you visited a Chronic Pain Specialist?
posted by doorsfan at 11:37 AM on May 22

One question I would have is whether anyone has mentioned or considered the possibility of Sjogren's? Are your symptoms accompanied by dry mouth?
posted by drpynchon at 11:52 AM on May 22

No one takes me seriously when I give this advice, but I'll offer it anyway. Try a potent probiotic, the good stuff, not the crap you buy at the grocery store, go to a health food store or hell, even GNC. For two years, I had many of the same symptoms and played a lifetime's worth of physician merry-go-round. What worked for me was to (1) go on a gluten-free diet (2) start taking probiotics. Having the right balance of intestinal flora really resolved a lot of my wacky medical issues and believe you me, they were all over the map. I tested positive for Sjogren's, they thought I had Lupus or some other non-descript auto-immune disorder, RA, all kinds of stuff. Two weeks on some potent probiotics and all was well.

My theory was proven again two months ago when I had to take some antibiotics and within a few days, all my old symptoms started to return. I was miserable, I broke out in hives, had sever joint pain, etc. Within a week or so of being back on probiotics, all was good.

People under-estimate how important your gut is to your overall health, not me, not any more.

Good luck!
posted by SoulOnIce at 2:17 PM on May 22 [1 favorite has favorites]

A previous related thread.

What I posted in that thread: "Since I was in about 5th grade or so, mine fill up and don't drain properly - I have to press on them to release saliva or else they swell up and harden. The doctor said that can be normal for some people. Usually it's only when I eat or do something else that gets my mouth watering (chewing gum), and I can do it with a shoulder shrug so I can be inconspicuous."

So, when the swelling goes down and isn't too painful, press on them to drain them... see if doing that several times a day prevents them from swelling up again. I don't even realize I'm doing it anymore, most of the time. I don't have pain as long as I don't allow them to swell and harden.
posted by IndigoRain at 10:40 PM on May 22