Unilateral facial swelling - pls help

Posted by gnandanpai @gnandanpai, Feb 5, 2022

Hello, I am new to the forum so pardon any breaking of rules. I am not yet diagnosed with an auto-immune disorder. However, I did not know where else to post about my conditions. I have done my best to provide a clear synopsis below. If anyone faces something similar and has tips I much appreciate it!

—— SYNOPSIS ——–
44 yr old otherwise healthy male

SYMPTOMS:
– Recurrent (4 episodes in 7 weeks) UNILATERAL (RIGHT) CHEEK & UPPER-LIP diffused swelling.
– Initially, self-resolving (duration: 3-14 days), though the last (4th) episode is still persistent after 14 days.
– 4th episode has area UNDER & LATERAL (eye-lid NOT involved) to the RIGHT EYE involved as well.

– NO OTHER SYMPTOMS …
– NO pain/tenderness & erythema.
– NO fever.
– NO headache.
– NO nasal congestion, runny nose or any other upper respiratory symptoms.
– NO troubled breathing, swallowing or eating.
– NO pain in gums or teeth while chewing or otherwise; the Dentist did not find anything remarkable during his evaluation and read of panoramic dental x-rays.
– NO tingling/numbness/paralysis.
– NO palpable hard mass.
– NO fatigue.
– NO unintentional weight loss.

HISTORY:
– NO PERSONAL history of allergies; no exposure to any new foods or chemicals; no travel (Zyrtec, Benadryl, Flonase, Saline Spray did not *seem* to improve symptoms).
– NO PERSONAL history of sinusitis.
– NO change in medication (current medication are Finasteride 1mg & Minoxidil 5% for Alopecia which I have used for over 20 years without issues).
– NO trauma.

RECENT VACCINATIONS:
COVID-19 – April 7th 2021, May 5th 2021, Nov 30th 2021
Tdap – Sept 16th 2021
Flu – Oct 28th 2021
HPV – Sept 16th 2021, Oct 28th 2021, the final dose is scheduled for Mar 15th 2022.

AUTO-IMMUNE:
– FAMILY HISTORY of auto-immune: [Vitiligo (Mom & both maternal grandparents), Grave's disease (maternal uncle), Diabetes (mom), Alzheimer's (maternal grandmother) etc].
– PERSONAL HISTORY of auto-immune: Alopecia Areata (auto-immune disorder) since 2017.

CANCER:
– FAMILY HISTORY of cancer: Maternal aunt died of Lymphoma.

-General dentist did not find anything via oral evaluation & panoramic x-rays. He recommended visiting Oral Surgeon as the next step.

-ENT did not find anything via nasal endoscopy.

– ENT ordered a CAT scan (w/o contrast) of the sinus area, which found "Polypoid mucosal thickening" in sinuses. CAT scan ruled out any tumour, cyst, abscess in the area. However, ENT did not think that the sinus issues explain the facial swelling. He prescribed oral antibiotics (Augmentin) & oral steroids (Prednisone) and recommended visiting a Rheumatologist & Immunologist as the next steps. I have NOT started the antibiotics or steroid course just yet (preferring to get a solid diagnosis first).

– Visited Immunologist. She did allergy tests but nothing interesting came up except a very mild allergy to pine, roaches, rats & feathers. She ordered blood work & urine tests. Results were unremarkable except for mildly elevated IgA (348). She also prescribed Allegra in the meantime which as of yet has had no effect.

– Visited Oral Surgeon. He said he had no ideas about what was going on, but ruled out any dentition, oral tumour, cyst, abscess, salivary gland issues, TMJ issue etc. He did not recommend a biopsy until there is more imaging or evolution. He said MRI of the face w/ and w/o contrast, may be useful but taken only when my swelling is at its most extreme (logistically challenging given swelling is up and down, and MRI has wait time w/ insurance pre-auth). He suggested an option to go to ER for the MRI when swelling is at its worst.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@gnandanpai Welcome to Mayo Connect . This must be so confusing and frustrating for you. Have you gone to a major medical center or a university teaching hospital? I’m thinking you need someone at a higher level who can put everything together for you. There are many new autoimmune diseases suddenly appearing and most community-based physicians just cant keep up. You can google ‘medical centers of excellence’ in your area as a start. I go to the university teaching hospital about 30 miles away and see a neuroimmunologist because no one locally knew what i had.
You’ve seen quite a few doctors, but have you seen a dermatologist?

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Hi there, in answer to your comment on swelling in your face. I have similar problems. My face starts swelling at my temples and goes down into my glands in my throat My face swells. The only thing that makes it go away fast is prednisone. It lasts about 7 to 10 days.. I have been diagnosed with Sjogrens. I’m not convinced though.

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@burlingtongirl

Hi there, in answer to your comment on swelling in your face. I have similar problems. My face starts swelling at my temples and goes down into my glands in my throat My face swells. The only thing that makes it go away fast is prednisone. It lasts about 7 to 10 days.. I have been diagnosed with Sjogrens. I’m not convinced though.

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@burlingtongirl your face swells and you have sjogren’s. So the swelling didn’t go away with the treatment for sjogren’s? How often does the swelling happen?

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@becsbuddy I am already seeing specialists from the best hospitals in NYC (Mt Sinai and NYU Langone). Do you have any other recommendations in the NY and surrounding areas? I am seeing Rheumatology, Ophthalmology and Head & Neck surgery next after getting face & brain MRIs.

@burlingtongirl Did you have dry eyes and a dry mouth? Online it says for Sjorgen's dry eye and dry mouth are the classic/typical symptoms. Looks like your symptoms are bilateral.

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@gnandanpai

@becsbuddy I am already seeing specialists from the best hospitals in NYC (Mt Sinai and NYU Langone). Do you have any other recommendations in the NY and surrounding areas? I am seeing Rheumatology, Ophthalmology and Head & Neck surgery next after getting face & brain MRIs.

@burlingtongirl Did you have dry eyes and a dry mouth? Online it says for Sjorgen's dry eye and dry mouth are the classic/typical symptoms. Looks like your symptoms are bilateral.

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@gnandanpai .. It sounds like you have a good team working for you. Are they able to share medical records with each other? If you haven’t already, be sure to start a journal with names, dates, who said what, medications suggested, etc. believe me, it sure helps to have everything years from now.
Have the doctors come up with a plan of care?

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@gnandanpai – Welcome to Mayo Connect! This is a very good place to share information and get input from other members with similar problems.
After reading your synopsis I recommend that you do try the treatment recommended by the ENT- antibiotics and prednisone.
Sinusitis, especially chronic, can be difficult to pinpoint. The CT says “polyploid mucosal thickening”.
I have a lifelong history of sinus illness- since childhood. I have had 2 sinus surgeries. Findings at the first procedure was identical to your CT report.
The second surgery just involved some minor corrections.
If you don’t try it, you will never know if there was any change at all.
Will you consider it?

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@becsbuddy

@gnandanpai .. It sounds like you have a good team working for you. Are they able to share medical records with each other? If you haven’t already, be sure to start a journal with names, dates, who said what, medications suggested, etc. believe me, it sure helps to have everything years from now.
Have the doctors come up with a plan of care?

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@becsbuddy Yes, I have maintained solid records, synopsis and symptom journal and shared it with every specialist I meet. Some of the specialists are outside the network but I physically give them the notes, labs, imaging etc from other folks

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@astaingegerdm

@gnandanpai – Welcome to Mayo Connect! This is a very good place to share information and get input from other members with similar problems.
After reading your synopsis I recommend that you do try the treatment recommended by the ENT- antibiotics and prednisone.
Sinusitis, especially chronic, can be difficult to pinpoint. The CT says “polyploid mucosal thickening”.
I have a lifelong history of sinus illness- since childhood. I have had 2 sinus surgeries. Findings at the first procedure was identical to your CT report.
The second surgery just involved some minor corrections.
If you don’t try it, you will never know if there was any change at all.
Will you consider it?

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I am not convinced it is sinusitis given I have NO other symptoms. I breathe fine, no headaches, no congestion, no pain, no snoring. The mucosal thickening I have been told is within normal levels for the season (I had a cold episode a few weeks prior).

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I have dealt with this on and off for 4 years. Dermatologist had me on prednisone, got Prednisone rosacea. Use all hypoallergenic products. Face swells, hot, red blotches eyes, nose chin, neck. Like a sunburn, extra dry. Cream makes it worse. only relief is ice paks. Prednisone shots helped once , not anymore. Keflex helped once and not anymore. No answers from anyone. I am currently looking into hereditary angioadema. Has anyone experienced this?

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@fisherslady

I have dealt with this on and off for 4 years. Dermatologist had me on prednisone, got Prednisone rosacea. Use all hypoallergenic products. Face swells, hot, red blotches eyes, nose chin, neck. Like a sunburn, extra dry. Cream makes it worse. only relief is ice paks. Prednisone shots helped once , not anymore. Keflex helped once and not anymore. No answers from anyone. I am currently looking into hereditary angioadema. Has anyone experienced this?

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Hi @fisherslady and welcome to Mayo Clinic Connect. You'll see that I moved your post to a discussion talking about facial swelling.
There is also another discussion going on here: Facial Swelling – no diagnosis after 2 years:https://connect.mayoclinic.org/discussion/facial-swelling-no-diagnosis-after-2-years/

Are you currently keeping a log of when it flares up? Have you noticed any consistencies?

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