Right Cheek Swelling

Posted by plbb1 @plbb1, Nov 24, 2021

My right cheek has been noticeably swollen since June 2021. I didn't notice it until
3 1/2 mos after 2 co-vid vaccines. Also, a small lump on right jaw. After my booster in September my right cheek swelled even more. Since October I sometimes have numbness/tingling on that side of face and in mouth. Been to dentist, primary, and ENT. CT didn't show anything suspicious. I have RA and am on methotrexate and humira. I'm at a loss.

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@colleenyoung

@gnandanpai, if you would like to find out if you can be seen by specialists at Mayo Clinic, I suggest you contact Mayo MN to inquire and request an appointment.

Mayo Clinic welcomes both new and existing patients for virtual and in-person care, including elective surgeries, in adherence with federal and state executive orders and guidance.

Video and phone visits also can be great options for appointments before, after or in place of face-to-face care. Appointment coordinators will recommend a virtual visit if it best fits your individual needs.

Here's the contact information to find out more and next steps: http://mayocl.in/1mtmR63

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@colleenyoung thank you for the tip. As I indicated in my previous message, my case is quite complicated and I do not know at this point which specialist/department I should approach at Mayo. I have been to a dentist, oral surgeon, head & neck, PCP, rheumatologist, allergist, dermatologist and ophthalmologist. I have doctor notes, well-maintained symptoms & history diary, CT scan reports, MRI reports and blood & urine work. I would need someone at Mayo to look at my records prior to making a recommendation of which specialist or group of specialists I need to see. How do I go about this?

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@marye2

I had a salivary gland infection (looking at the anatomy, you can see three glands along the jawline). I have had a cyst (salivary stone) or two come and go..For pain, try lemon drops to open up the Eustachian tubes, gently massage the area and use moist heat in the area. It is a strange thing, possibly related to dry mouth. Maybe something with sinus is going on with your cheek? Or, TMJ? Dentist told me to use ACT, or similar, xylitol mouthwash to take care of bacteria. These are just part of the weirdness of the disease. I look up the anatomy of the area so I can describe what is going on to the Dr and have been pretty successful with ice/heat, lidocaine patches, PT and other non-drug treatments. Of course, I am on the usual for MCTD and not much for supplements besides magnesium, D3 and B12 from the Dr.

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@marye2 what is MCTD? Also, for your salivary stone, did you need surgery or some procedure to get them out?

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Luckily, for me, no surgery was necessary as it turned out to be a bacterial infection in the three salivary glands (parotid). Usually the stones go away on their own; has to do with keeping the eustachian tubes open. MCTD (Mixed Connective Tissue Disease) has overlapping conditions, like Sjogrens, that cause issues. This was my first hospitalization from the disease in 26 years. Here's more from webmd. https://www.webmd.com/oral-health/guide/salivary-gland-problems-infections-swelling

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Hey!!! I have the same stuff, but I know what mine is. These are marks of Gelsolin, or also called Finnish Amyloidosis, perhaps with LGMDr23 (almost the same stuff.) GSN (Gelsolin) loosens up the actin web around each cell, and allows the skin to sag, slowly but steadily. Your methotrexate is keeping it at a slow pace. GSN is part of Amyloidosis, part of Myeloma, with is a cancer. There are only a few hundred of us showing this now. My lumps are under my jawbone on the right, and under my right lip corner, and under my right eye. I also have blepharoptosis in the right eye and making my eyelids swell. Also on my cheek bones. Also swollen pancreas, heart walls, easy bruising, painful teeth, etc. Martha Grogan at Mayo Rochester is one of the best in the world at knowing what this is and how to deal with it. Watch her webinar presentations, especially the diagnosis one. oldkarl

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@gnandanpai

@colleenyoung thank you for the tip. As I indicated in my previous message, my case is quite complicated and I do not know at this point which specialist/department I should approach at Mayo. I have been to a dentist, oral surgeon, head & neck, PCP, rheumatologist, allergist, dermatologist and ophthalmologist. I have doctor notes, well-maintained symptoms & history diary, CT scan reports, MRI reports and blood & urine work. I would need someone at Mayo to look at my records prior to making a recommendation of which specialist or group of specialists I need to see. How do I go about this?

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Oh gosh, @gnandanpai, I see that I didn't respond to your question. Apologies.

You pose a valid question. If you don't know what department to start with, how do you apply. Luckily, Mayo Clinic will help guide you through the process. @artscaping can tell you about her experience using the online form. The form has 4 section and the first one asks about your main concern. You do not have to designate which department you'd like to be seen by.

If your request just doesn't fit into the boxes of the form well or you don't like forms, feel free to call Mayo Clinic at the location of your choice (AZ, FL or MN). The schedulers will walk you through the process.

Here's the link again to both the online form and contact phone numbers: http://mayocl.in/1mtmR63

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@colleenyoung

Oh gosh, @gnandanpai, I see that I didn't respond to your question. Apologies.

You pose a valid question. If you don't know what department to start with, how do you apply. Luckily, Mayo Clinic will help guide you through the process. @artscaping can tell you about her experience using the online form. The form has 4 section and the first one asks about your main concern. You do not have to designate which department you'd like to be seen by.

If your request just doesn't fit into the boxes of the form well or you don't like forms, feel free to call Mayo Clinic at the location of your choice (AZ, FL or MN). The schedulers will walk you through the process.

Here's the link again to both the online form and contact phone numbers: http://mayocl.in/1mtmR63

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Good evening @gnandanpai and thank you @colleenyoung for the introduction. Colleen is correct. I have just completed an online application for Mayo Clinic that was quite successful. Of greatest importance was that it didn't take very long to complete and there were no additional documents required. You have a chance and 300 words to tell the admission folks about yourself, your hopes for help from Mayo, and the last section which is called "Wrap up". There you have 300 words to say anything you want to about your desire to be a Mayo patient.

The lines are not all run together like a paper application. There is plenty of room to write and plenty of time to think. You can read your answer back, edit it and change it. The subject areas are specific and easy to understand.

From the information you submit, an admissions staff member, calls you to review, clarify and discuss your situation. Fortunately, I received my acceptance after the interview and went on to be registered for my first appointment.

I think you will find everyone in every department at Mayo to be helpful, kind, and empathetic.
It appears that you are a great organizer of your health records. Should you be able to be accepted and scheduled right away, the information on your application is sufficient to get the wheels moving.

As Colleen has mentioned, the admission team will make a decision about your starting point based on the information you provide. They are quite good at that and I found that I was in a perfect home for my health needs.

Good luck to you. And please let us know the result.
Chris

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@artscaping

Good evening @gnandanpai and thank you @colleenyoung for the introduction. Colleen is correct. I have just completed an online application for Mayo Clinic that was quite successful. Of greatest importance was that it didn't take very long to complete and there were no additional documents required. You have a chance and 300 words to tell the admission folks about yourself, your hopes for help from Mayo, and the last section which is called "Wrap up". There you have 300 words to say anything you want to about your desire to be a Mayo patient.

The lines are not all run together like a paper application. There is plenty of room to write and plenty of time to think. You can read your answer back, edit it and change it. The subject areas are specific and easy to understand.

From the information you submit, an admissions staff member, calls you to review, clarify and discuss your situation. Fortunately, I received my acceptance after the interview and went on to be registered for my first appointment.

I think you will find everyone in every department at Mayo to be helpful, kind, and empathetic.
It appears that you are a great organizer of your health records. Should you be able to be accepted and scheduled right away, the information on your application is sufficient to get the wheels moving.

As Colleen has mentioned, the admission team will make a decision about your starting point based on the information you provide. They are quite good at that and I found that I was in a perfect home for my health needs.

Good luck to you. And please let us know the result.
Chris

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I really appreciate your detailed answer @artscaping I filled out the form yesterday. I selected a time slot for them to call for today, but I did not get a call. Does it mean I have been rejected? I put in as much info as possible in the 300-word limit I had and did my best. My doctors in NY (NYU Langone and Mt Sinai) have given up on my case and so Mayo is my only hope!

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@gnandanpai

I really appreciate your detailed answer @artscaping I filled out the form yesterday. I selected a time slot for them to call for today, but I did not get a call. Does it mean I have been rejected? I put in as much info as possible in the 300-word limit I had and did my best. My doctors in NY (NYU Langone and Mt Sinai) have given up on my case and so Mayo is my only hope!

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Good afternoon @gnandanpai, Great! I think it says a return call can be within 3 days. This now requires positive thinking and patience. I am actually on my way to Mayo this afternoon for another appointment so I will check in this evening.

May you have comfort and ease.
Chris

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@artscaping

Good afternoon @gnandanpai, Great! I think it says a return call can be within 3 days. This now requires positive thinking and patience. I am actually on my way to Mayo this afternoon for another appointment so I will check in this evening.

May you have comfort and ease.
Chris

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Thanks @artscaping You were right. I got a call 3 days later. However, looks like Mayo Clinic does not take my insurance, so I won't be able to be seen there for now. I wish you luck with your journey! Thank you for your help!

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I would add just a little to my previous statement. I have the same symptoms, and have a sort of prelim dX from several labs, including Sequencing.com, Ambry, LivingDNA, and some others. Now that I have a little more knowledge, I can suggest where to look. First, you appear to have a classic case of cutis laxa, probably from your Gelsolin (also called Finnish Amyloidosis or Meretoja's, or some other stuff.) This Gelsolin is often a partner disease to Limb Girdle Muscular Dystrophy R23, or also using labels of FKTN and/or FKRP. NIH at one time carried a paper that mentioned that Gelsolin and LGMDr23 were either identical or different names for the same disease. There are a number of other disorders that fit nicely into this syndrome. A good whole genome sequencing should help immensely. Also, the Methotrexate you are using has kept me alive for 5-6 years. If you take enough of it (my doc says for me to take .80ml, or about 40% of one of those tiny bottles every Monday morning, first thing. ) it slows down the progression of the disease, but does not stop it. My LGMDr23 and GSN are moving along, but are not stopping. My right face areas are puffing out slowly, and my joints in limbs are swelling, but quite slowly. My heart, kidneys, esophagus, brain are all filled with Actin cancer and other stuff now. But at 82, I am getting along rather well, except for the neuromuscular and joint pain. Remember: Gelsolin and FKTN attack the same weak areas of human cells. Gelsolin makes a mess out of the Actin web for GSN protein purposes in the cells, and this opens the cells up for FKTN LGMDr as well. oldkarl

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