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St Thomas Lupus Trust
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Bilateral chronic, reoccurring mastoiditis/ear infections/glue ear, PET and lupus (sle). Does anyone have experience of this?

Hi fellow warriors :)

I have just been diagnosed with sle but I think I started with it in my teenage years-i am now 36.

I have bilateral (both sides) chronic, reoccurring mastoiditis (infection of the bones behind each ear). I have had multiple surgeries over the years in an attempt to remedy this. I started life with ‘glue ear’ (aged 2) as a child - have had adenoids out and grommets in and out multiple times-nothing seemed to work and I never ‘grew out of it’ as all the doctors used to say I would. It seems to have just developed into mastoiditis during adulthood.

I also have developed something called Patulous Eustachian Tube (PET). I was about 8 years old when this happened but I now learn (since being diagnosed with Sjögren’s too) that it can be associated with Sjogren’s. PET is when your Eustachian tubes stay open which causes autophony which is when you can hear your own body noises/voice loud inside your head-it’s horrible!

I am getting treatment before both conditions - bioplastique injections into my Eustachian tubes to close them which gets rid of the autophony - has been a lifesaver for me :)

I also have to have surgery on my mastoid bones usually every 2 years or so-the ent surgeon exposes both bones behind my ears and drains, lasers, cleans the bones. Unfortunately each time this is done I lose a bit more hearing due to the damage caused during the procedure and due to the fact that the never ending mastoid bone infection keeps eating away at the bone :( I am on the waiting list to have a hearing aid implanted on my right side. If I don’t have the mastoids cleaned there is a risk of potentially developing meningitis as the mastoids are so close to the lining of the brain-so the stakes are high!!!

My question is can anyone else in this site relate to anything I have described?

If so do you know of any doctors who may have an interest in researching the potential link between recurring mastoiditis/ear infections and lupus? I have found some literature (research journals) online that have looked into a potential link, but it seems pretty inconclusive as far as I can see. Ideally I need someone who has an interest in both ears and immunology-I am aware that that is probably as likely as finding a gold pot at the end of a rainbow, but I thought it worth an ask!!

Ideally I would like to know if there is any medication I may be able to take that may reduce the need to have my ears cut open every couple of years. I’ve had each ear cut open 4 times know and it really is staring to take its toll physically on my ears-logically I don’t see it being viable for doctors to open them up every 2 years or so for the rest of my life-the damage will be immense!

Thank you for reading and I look forward to reading any suggestions and experiences any of you may have.