Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Douglas on February 22, 2017, 11:08:47 AM

Title: Enlarged glands on face
Post by: Douglas on February 22, 2017, 11:08:47 AM
Is it possible to reduce/remove this swelling. Below both of my ears is terrible swelling and you can't see the back corner of my jaw. It's been like this for a long time (10 years at least) now and it's not going to go away now on it's own.

I have episodes when the Parotid gland swells up even more and it's so painful to even attempt to eat but after the swelling resides the glands just go back to the enlarged state that they were before. I feel like Frankenstein with this.

I would actually rather cure this than the fatigue.

Title: Re: Enlarged glands on face
Post by: Sharon on February 22, 2017, 11:41:34 AM
Hi Douglas,
What have doctors suggested so far?
Definitey sounds like parotid gland swelling.
You need a good salivary gland specialist.
They will probably check for blockages, infection and inflammation.
There is a procedure called a salivary gland endoscopy in which they clean out the glands
and flush them with a steroidal or antibiotic solution. It can help in certain cases.
There are also more serious surgical options.
Title: Re: Enlarged glands on face
Post by: Douglas on February 22, 2017, 11:52:22 AM
Nothing like that has been suggested. I was told to massage the glands to stop flare ups but nothing to get rid of this swelling.

I would be prepared for surgery! It's a horrid thing to have to live with. I will certainly put all this towards my first meeting in April with my specialist. It took many years to finally get diagnosed with Sjogrens and i have noticed not all Sjogrens sufferers have the swollen glands.
Title: Re: Enlarged glands on face
Post by: irish on February 22, 2017, 06:53:05 PM
Doctors who clean out these ducts are usually ENT who specialize in this. This is something that needs to be done full time to get really good at. Ask around and google in your area and your universities to find this specialist. Good luck. Irish

P.S. Do you put warm, moist packs on this area prior to massaging? This does help to softened up the crud we get in those glands. However, long term swelling ad clogging of the glands does take more intense treatment.
Title: Re: Enlarged glands on face
Post by: Douglas on February 23, 2017, 03:53:29 AM
Thanks for the advice. I will certainly ask for a refferal when I see the specialist in April.
Title: Re: Enlarged glands on face
Post by: LadyDi on February 23, 2017, 04:05:42 PM
Hi Douglas, I'm sorry to hear about your visibly swollen and enlarged parotid glands. My glands are frequently very sore when my disease is active and my rheumatologist can physically feel them enlarged when he examines me. He told me that they are not visible to the naked eye and then he proceeded to tell me about one of his other Sjogrens patients, whose face is extremely swollen as a result of the inflammation of her parotids. I thought that I would mention this, because obviously you are not alone with this problem, as others with this disease also suffer with this facial disfigurement.   

I think that you were given good advice on this forum, to make an appointment with an ENT doctor to see if there is any type of procedure that they can do to alleviate the swelling. I will be making an appointment with an ENT soon, as my primary care doctor recently informed me that my nasal polyps have returned and most likely will require surgery to remove. Others with Sjogrens also report reoccurring nasal polyps, which have been linked to the disease.

If its any consolation, my speech sounds like that of a cartoon character because of my chronic nasal congestion. I work with teenagers, who aren't always so kind about it and I often feel humiliated by their comments.

Hang in there and please know that you are not alone,
Title: Re: Enlarged glands on face
Post by: warmwaters on February 23, 2017, 06:46:15 PM
You've gotten good advice.  I have parotids that are visible most of the time, and can swell up further.  I use warm pads on them before massaging. It's also possible having a lemon drop may get some saliva flowing, which may help drain them somewhat.  My rheumy also suggested generic for Musinex, which things secretions.
Title: Re: Enlarged glands on face
Post by: Nymph on February 24, 2017, 03:11:23 AM
The thing that works best for me is rice-filled packs that I heat up in the microwave. It makes a warm, moist, heavy pack. I have one that is small enough to put on my face. Then I lay on my side and place it on there for 15 min or so. Repeat on the other side. This helps the pain significantly. However I have never had severe swelling so I don't know about that. Hope you find something that works for you.
Title: Re: Enlarged glands on face
Post by: Douglas on February 24, 2017, 06:22:12 PM

I did see ENT people at NHS hospital about 8 yrs ago. They were ones who just said massage it. They just moved me on.

The dental Hospital people were the saviours who found out what was really wrong with me. I will try again. Much thanks.
Title: Re: Enlarged glands on face
Post by: trejonina on February 24, 2017, 08:04:45 PM
Hello, I tried Glutathione capsules, which is the super antioxidant of all, for my swollen and slightly painful lymph nodes and it worked fast. I tried the capsules and took the 500 mg dose for 3 days then lowered it to 250 and no more pain. The Hallwang Clinic in Germany (Cutting edge in Oncology) uses a combinatiom of Glutathione, selenium, vit C and others, etc,  to boost immune system in infusions. I''m humbly doing it with capsules and pills. Try Glutathione, you can't lose. And I didn't believe the hype that it is only absorbed in IV. I bought the NOW brand in capsules which is the only one available in this country. By the way Alpha -lipolic- acid is supposed to be good for neuropathies according to Hallwang.Luck.
Title: Re: Enlarged glands on face
Post by: trejonina on February 24, 2017, 08:08:48 PM
P.S I don't have or ever had cancer just combining supplements to boost my immune system.
Title: Re: Enlarged glands on face
Post by: Douglas on February 25, 2017, 07:32:24 AM
Thanks. I will look into this and hopefully they are affordable. (edit) They have them quite cheap so I will purchase them.
Title: Re: Enlarged glands on face
Post by: selavy59 on March 07, 2017, 11:14:33 AM
Same as you. I look like a gerbil getting ready for winter.
Title: Re: Enlarged glands on face
Post by: irish on March 07, 2017, 12:19:48 PM
Lady Di, I am just curious if you have ever had any other testing for the nasal congestion that you mention? I have had this for years also and I just thought it was totally my sinuses. It turned out that as my other symptoms increased and I was eventually diagnosed with Sjogrens after about 40 years of illness, I then had to wait another few years and see an immunologist who took one look at me and told me I had myasthenia gravis. This is an autoimmune neurological disease and it causes weakness of muscles that come and go. I also can't blow up balloons and could not blow up ResusiAnnie in my CPR classes.

It turns out that people with myasthenia develop weakness in the very small muscle in the roof of their mouth that closes off the nose. I would get peas up my nose when I ate and always sounded like I was in a barrel when I talked. I also had other symptoms such as blurry vision, weakness in my face muscles and periodic weakness in muscles of my body that would improve when I rested. I was diagnosed with positive blood work back in 2006 and have been on IVIG since then for my Myasthenia. Just wanted to mention this cause it was so insidious and not really terrible that I never made a big deal of it. Good luck. Irish
Title: Re: Enlarged glands on face
Post by: trejonina on March 07, 2017, 05:57:25 PM
Hi Douglas, have you checked that the cause of swelling is an infection,  or even God forbid cancer ?
Title: Re: Enlarged glands on face
Post by: cccourt1942 on March 08, 2017, 09:04:14 AM
    This is like having a permanent feature---the way you describe it.  I cannot imagine where/how the swelling occurs. I had sialadenitis chronically for about 5 years before dx.  My parotids would swell...or I would describe it as distention.  the gland would distend from my jaw line...and distend in the shape of a thumb.  It could and did happen within seconds.  What I realized after I learned what it was, is the cheek had to have been swollen before the duct was completely blocked (thus the distention) but I couldn't see it.  In fact, after the condition became chronic, I learned to feel the area to attempt to predict when I was going to have another blockage.  btw: the ENT who treated me for that NEVER suggested SjS. 
    Because you aren't uncomfortable from the swollen cheeks, there must me a simple or logical reason for it.  I am unusual for an adult who remembers what I looked like with mumps.  I had mumps twice: once as a toddler, and again at 24 when pregnant with my second child.  It was a strange sight.  Though my distentions looked strange, they weren't even like the mumps were...or maybe I should say rounded like mumps.
    Whatever it is, it has to be unusual for nothing to be gleaned from a google search.  Oh...I presume you've googled than this.
   Have a great day.
Title: Re: Enlarged glands on face
Post by: LadyDi on March 08, 2017, 04:46:55 PM
Thank you for your response Irish, yes I usually have a CT scan of the sinuses when I have this (usually one sided) severe nasal congestion.

CT has shown sinus polyps in the past and I have had to undergo endoscopic sinus surgery to have them removed. The surgery provides great relief, but unfortunately polyps more often than not do reoccur, which has been my experience.

At one time, it was thought that I was suffering from Wegeners Granulamatosis or Churgg Strauss Syndrome, but these diseases were ruled out when I was diagnosed with Sjogrens.

I have permanantely lost my sense of smell and have very minimal sense of taste. My primary care doc was able to see a polyp when looking up my nostril with his scope. I am trying to find time to schedule an appt. with an ENT surgeon, but am so busy with work and all that life is throwing at me right now.

Thank you for your well wishes