Facial lymphedema issue - only oral steroids have helped minimally

Posted by dkeisenga @dkeisenga, 4 days ago

My husband has had facial swelling for almost two years. His forehead, eyelids and under eye area are filled with fluid. The only thing that has helped is oral steroids for a short time. This started immediately after a combine fire where he used a fire extinguisher. Any help would be appreciated!

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Becky, Volunteer Mentor | @becsbuddy | 3 days ago

@dkeisenga. Welcome to Mayo Clinic Connect! I’m glad you found this site and have asked a good question. While we wait for members who have also experienced facial swelling to comment, here is a discussion about the same issue.
https://connect.mayoclinic.org/discussion/facial-swelling-no-diagnosis-after-2-years/
Do the doctors have any ideas of what keeps the swelling after 2 years?

John, Volunteer Mentor | @johnbishop | 3 days ago

@dkeisenga, So sorry to hear your husband has to deal with facial lymphedema. I have it in my legs and can't imagine how difficult it would be for the face and head area. Has your husband tried any physical therapy or exercise that might help with the drainage? Here's a video that shows some exercises to help with the drainage that might be helpful.

dkeisenga | @dkeisenga | 3 days ago

In reply to @becsbuddy "@dkeisenga. Welcome to Mayo Clinic Connect! I’m glad you found this site and have asked a..." + (show)

@becsbuddy. He has gone to about every specialist we can think of. He does lymphatic massage, he is taking accutane and we have ordered a compression mask. We have also ordered a vibration plate hoping that it may offer some help in draining the lymph nodes. His eyes water quite a bit and by the end of the day, he is exhausted from trying to keep them open. Any help would be appreciated!

minnesota10 | @minnesota10 | 3 days ago

Has he had trouble in the past with any chemicals? Fire extinguishers have a number of chemicals in them and I don’t know which one or ones that are in the brand you have. Have they thought about a reaction that his body is having trouble getting rid of.
I know when I was on the farm, the corn root worm insecticide Came out. I never touched the chemical, but I did touch my husband’s clothes. He had no trouble with the chemical, but my throat went shut or almost shut the muscle muscles in my neck became distorted. Had to go into the emergency room and get a shot for the reaction I was having.
This is the reason I’m questioning chemicals
I wish you the very best and figuring this out

dkeisenga | @dkeisenga | 3 days ago

Thank you for your response. We have questioned that same thing, but none of the Dr.'s seem to think that is it. As a farmer, he has been exposed to chemicals and has never had a reaction before.

Becky, Volunteer Mentor | @becsbuddy | 2 days ago

In reply to @dkeisenga "Thank you for your response. We have questioned that same thing, but none of the Dr.'s..." + (show)

@dkeisenga We seem to have hit a wall-with no helpful answers being given. Have you thought about maybe going to Mayo Clinic? It is located in 3 states:Minnesota, Florida and Arizona. You might want to call them to see if they would be helpful.
The web address is http://mayocl.in/1mtmR63. Your doctor may need to help you with all the medical information they may want. You know, at this point, it may be your best option.

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