Intermittent right side facial swelling

Posted by lisafabs32 @lisafabs32, Apr 22, 2023

Hello 10 years ago my face started to swell up only on the right side - it would happen 2-3 times a year but since January 2023 it’s been happening once a week. It starts in Rutherford my jaw line or under my eye on the cheek bone but always the right side. I have every blood test under the sun I have MRI’s, CT’s and Ultrasounds, all negative.
I have been to Mass eye and ear and Mass General and I have consulted with ENT, Neurologist, Allergist, Dentist and Rheumatologist. Everyone can see the fluid but no one can tell me where it’s coming from or what’s causing it.
I have been prescribed Prednisone 4-5 times since January and every time I finish my script my face flares up again. My ENT thinks he might have seen this once before in his residency… MRS Syndrome and prescribed and old antibiotic called Dapsone wants me to stay on it for 3 months- although it’s not preventing the swelling.
I am so discouraged. Has anyone else had intermittent swelling on the right side only of the face?

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Becky, Volunteer Mentor | @becsbuddy | Jun 13, 2023

@lisafabs32 I was thinking about you today. Have you gotten any answers to your facial swelling?

lisafabs32 | @lisafabs32 | Jun 13, 2023

Hi @becsbuddy thanks for checking in. My ENT Increased the Dapsone to 100 mg a week a month ago abd I’ve been pretty good for about 3 weeks but Sunday a very bad flair up so I’m back on prednisone for six days. He said he thinks it’s a lymphatic channel blockage - and there’s really no cure. I’m going to start massaging that side of my face I read that doing that can prevent the swelling.
Thank you again for checking - How are you doing?

frking | @frking | Jun 20, 2023

In reply to @lisafabs32 "Hi @becsbuddy thanks for checking in. My ENT Increased the Dapsone to 100 mg a week..." + (show)

Hello,
To be brief, I have Long Covid since February 2022. Way back in October I awoke up one day and both sides of my lower face were swollen. About a week later I awoke to lumps about two inches away on either side of my neck. I have had a CT scan and an MRI., and seen more doctors than I can count. The results of the CT scan and MRI is that the Buccal pads in my cheeks have herniated the fat within them is the cause of my swelling. The lumps around my neck are fatty pads. No one knows why this happened, and the conclusion is that I have liposuction on my face and neck.
I have had a career as a Lymphedema Therapist with a PT group. I trained with the Dr. Vodder school. He created this method of massage, which alters the route of the lymphatic fluid if there is a blockage. It is not a cure, but an effective method of reducing the swelling. Unless you know the specifics of the massage, you could make the situation worse. If you see a therapist for this massage, please ask to see their training credentials.
Before I knew the issue was fat, I did the lymphatic massage with no result. It's not going to move the fat. I have seen one plastic surgeon and have an appointment to see another in August, and if the issue has not miraculously resolved itself, I will have the liposuction.
Good luck on this journey.

Becky, Volunteer Mentor | @becsbuddy | Jun 20, 2023

In reply to @lisafabs32 "Hi @becsbuddy thanks for checking in. My ENT Increased the Dapsone to 100 mg a week..." + (show)

@lisafabs32 thanks for asking how I’m doing! Every day seems to be something new to deal with! But I really try to just keep going! Had an MRI yesterday that showed no new brain lesions, so that’s good. Now, if I just didn’t have to do housework!!

aleen | @aleen | Jul 13, 2023

Hi, I have had intermittent Right side facial swelling for 9 mos now and it subsides but never goes away. I've been to 6 or 7 different doctors and had a CT with contrast showing nothing. I just started taking Doxycyclean for 3 to 6 mos. I am still waiting for a diagnosis. Melkersson-Rosenthal Syndrome has not been ruled out. Thank you for posting, Aleen

Becky, Volunteer Mentor | @becsbuddy | Sep 28, 2023

In reply to @lisafabs32 "Hi @becsbuddy thanks for checking in. My ENT Increased the Dapsone to 100 mg a week..." + (show)

@lisafabs32 how is the facial massage working?

lisafabs32 | @lisafabs32 | Sep 28, 2023

In reply to @becsbuddy "@lisafabs32 how is the facial massage working?" + (show)

Hi!
It’s not!

I have succumb to the prednisone it’s the only thing that keeps the swelling at bay.
It’s been trial and error to figure out how low I can go - I’m down to 5mg a day and - it’s been 3 weeks on that dose with no swelling so far.

Thx for checking in- How are you doing/ feeling?

Becky, Volunteer Mentor | @becsbuddy | Nov 17, 2023

In reply to @lisafabs32 "Hi! It’s not! I have succumb to the prednisone it’s the only thing that keeps the..." + (show)

@lisafabs32 I’m so glad that your facial swelling is down!
As for me, I”m doing OK. I’ve been tapering my prednisone also—tough job! I’m down to 3.75 and working my way down. Isn’t tapering fun??!!
I’m really glad you’re doing better! Did anyone ever determine a cause for the facial swelling?

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