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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.


2 Replies

Blimey O Reilly, you have been through the mill, Serser. A chestful of medals there. Wish I could offer some concrete help, but it's something I know nothing about at all :( . Do you have confidence that the infectious agent(s) are being well characterised and properly eradicated each time? Would the professional body for ENT surgeons be worth contacting to see if they have a list of special interests? entuk.org/about-us

Hope things improve for you x

1 like

Hi Whisperit,

Thank you-I’m up for contacting anyone who might be able to help! So I will drop the professional body a line.

Earlier this year I tried contacting all the research centres of excellence around the country that specialise in ears, but I didn’t get much back :( I’m on a few lists just in case anyone decides to do a study in the future.

I’ve posted this same post in another group and a member on there suggested getting in touch with a Graham Hughes (I think!) who specialises in autoimmune diseases, but I think he’s retired now. I’m going to give it a shot anyway-nothing to lose! Again it’s that same old same old where the rheumatologist thinks only like a rheumatologist and and ent specialist only thinks like and ent specialist-never once thinking of communicating with each other or pondering the possibility that the reoccurrence of mastoiditis could be due to me having lupus for all these years.

Normally most people only require one mastoidectomy. I just can’t help but think that mine happens again and again, could it be due to the fact that I have lupus as well as mastoiditis too?? Could it be Lupus that is almost preventing it from getting better and making it reoccurring time and again?

It’s a bit chicken and egg-what came first the lupus or ear problems. But I think I started as a child with glue ear that was innocent enough, but when I got to my teens and developed lupus, that’s when it’s developed from glue ear to mastoiditis and refuses to go away! I do feel that lupus by its very nature tends to home in on your weaker points-mine of which have always been my ears.

My ent surgeon did admit that I am unusual with my ears for it to reoccur so many times. My most recent ops on them were in December 2017 for the right ear and March 2018 for the left. I can already feel that the infection is still there, but I know I’ve got about 18 months grace before I need to start asking for an

Op to cut them open again - it’s pretty grim!

Of course they could be 2 separate things and me trying to link them might be futile as there is no link. But at present I don’t feel that anyone us even trying to contemplate even the mere suggestion as they are all too busy doing their niche things and never deviating or contemplating possibilities-frustrating!

Anyway, thank you for responding to me :)


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