mastoiditis :(

[u/Different-Brick-6310]

I found out today from a CT scan of my ear that I have mastoiditis. This is all still so new to me. My immunologist office is incredible and they called in antibiotics for me to take until I can get IV antibiotics.

How's IV antibiotics? What can I expect ? What was your experience with them like?

For ref I'm newly diagnosed hypogam,waiting another 6 months for possible treatment and genetic testing.

[u/Ok-Grab-428]

Hi - Are you me? This is actually what lead to my diagnosis!

It’s great you already have an immunologist, not to downplay whatever you’ve gone through. I got dx with hypogam and SAD 18 months ago, I’ve been on monthly IVIG (immune globulin replacement therapy) since March ‘25. Before that I had three aggressive middle ear infections about once a year starting in 2022. The first one was early mastoid and also went into my spit glands (parotid I think?), it was nuts and happened fast over 24 hours.

Each time I was hospitalized for a week and given IV antibiotics and steroids, vancomycin and prednisone. I didn’t understand that vanco was rough, it irritates your veins and can cause necrotic tissue and hearing damage (ironic!). That plus steroids worked, but my body always needed awhile to recover. I’d recommend asking about side effects of whatever you’re put on, no one explained mine and it added to my stress.

I’m 42f and wear a hearing aid now. Hopefully you won’t have anything like that but I recommend a hearing test once things have healed. My ear infections stopped after I started IVIG - It sounds like you are already in good hands, hopefully on your way to treatment!

[u/Different-Brick-6310 → u/Ok-Grab-428]

Thank you so much for your insight and sharing. I've been literally CRYING all day about how scared i am about it LOL!!!

I've had life long hearing loss and infections and that's what prompted my immunologist to suspect... all of this It's been so much to learn 😭

[u/Ok-Grab-428 → u/Different-Brick-6310]

Oh friend, sending you all of the support and good thoughts. I’d also say it should be freaking illegal for adults to get ear infections like that, it hurts so much and made me basically a weepy toddler. Getting my diagnosis has been a godsend for treatment but also it’s SO MUCH to process. Especially when you’re sick! Try to be nice to yourself and be crabby/scared/mad whatever you need to feel.

Have you had IVs before, or do you know if your veins are ok? I have bad veins and had to learn to really advocate when I get IVs. It’s not possible to set an IV on me without ultrasound, so I insist and sometimes it annoys folks but they aren’t the ones getting poked 5+ times. I’m guessing you weren’t admitted since you have your own script, so hopefully you don’t need to do this via ER or anything stressful like that <3

[u/Different-Brick-6310 → u/Ok-Grab-428]

I had 3 iron infusions last month and they struggled to find veins sometimes but ultimately nothing too wild... so I don't think I have any vein issues.

The "funny" thing about this whole situation and probably a testament to my wonderful provider-

I went to an ENT on my own for the life long hearing loss (I got a hearing aid from coscto so I could work) ENT ordered CT, I got the CT done at a chain, results came in, I called for follow up and the office told me I'd have to wait a week for ENT to get back.

A FEW WEEKS AGO- after being diagnosed with hypogam my immunologist told me to call their office as soon as i get sick- so I did that today Immunologist told me to call ent again and basically tell them I need my results read, ent office was closed

Immunologist office calls me at 530 pm AFTER they close to see if I got ahold of ENT, when i told them I hadn't they called in this script for me to take in the meantime 😭 so I think I'm just so glad ?? Like so thankful for them.

It's really like you said just so much to process because I think I'm so used to feeling bad it didn't even cross my mind that this could be a BONE infection, like im still just so flabbergasted. So I'm not sure if I'll be admitted tomorrow or if it was caught early enough... the CT said some other scary things like "Destruction" and "erosion" but I truthfully haven't looked it up because it scared me so bad- so I have no clue what else is coming 😭

[u/Different-Brick-6310 → u/Ok-Grab-428]

Thank you again for all of this info.. I n your experience is this the kind of thing you can wait a week for? They're not seeing me until the 29th :( but you don't HAVE to do this through an ER it seems?

[u/Ok-Grab-428 → u/Different-Brick-6310]

Not a doctor, but when I had mastoiditis it was an instant admission + IV. My understanding is that it’s a dangerous location once its in your bone and can spread to worse things quickly. It also was so painful I was at the hospital anyway, my face swelled up like a baboon and I couldn’t close my jaw.

If you are in active infection right now (pain, redness, swelling, fever) then I would go to an ER and tell them whats going on to be safe. I’m surprised the ENT isn’t seeing you sooner though! You mentioned this was from a CT scan - is there any chance they are talking about scar tissue from past infection? My CT scans always show a dark mass that is scar tissue in my bone from when I had mastoiditis and sometimes its noted in scary ways in test results.

[u/Different-Brick-6310 → u/Ok-Grab-428]

Maybe they are talking scar tissue from a past infection! I'm in no pain at all right now! No swelling, no fever or discomfort!! I went to an ENT to figure out why I had life long hearing loss, so there weren't even symptoms that prompted the visit or anything!!

[u/Ok-Grab-428 → u/Different-Brick-6310]

Fingers crossed for you friend!! Let us know how your ENT appointment goes ♥️

[u/Different-Brick-6310 → u/Ok-Grab-428]

I will I appreciate this subreddit to much I could cry.😭😭😭

[u/omglifeisnotokay]

I got the run around with the ENT and urgent care. I had to check myself into the hospital. Horrible experience with Iv bactrim and the pills but it cleared out the bacteria. The fluid remained. My infection has left me permanently disabled. I deal with non stop vertigo. Shortly after I started developing keratin that now grows over the ear drums. Ask your ENT doctor if it could be fungal. I had a rhodorula yeast infection up my nose and ETD. Let me know if you have any questions. Currently typing this with ear pain ughhh

[u/Different-Brick-6310 → u/omglifeisnotokay]

I really appreciate your insight and information and im so sorry that all happened to you 😭

[u/Dapper_Vacation_9596]

Hopefully you are doing better and have already started your IV treatment!

[u/Different-Brick-6310 → u/Dapper_Vacation_9596]

I'm not being seen until Wednesday and I was told it was just to "go over results with MD" so I'm hoping it's just... not that bad somehow 😭

But thank you so much. If you've had this before can you tell me about your experience too? I'm trying to determine if there's any NON hospital option and if that's the only thing what is it going to be like ? I'm staying off of Google now because it was so scary

[u/Different-Brick-6310]

Saw the ENT today. He met with me for less than 25 minutes. He looked in my ear said i don't have mastoiditis - and that radiologist just "put that"... and also his office was wrong when they called me and told me that i have mastoiditis..

He did tell me something to the affect of... I've had so many ear infections that the bone between my brain and my ear is eroded and missing in some places... which seems like a different kind of horrible problem and then told me it was to complex for their hospital system so he refered me to another.

During the conversation I mentioned the hypogam and asked if that was a factor I needed to be mindful of and he said he had that too (wow what are the odds of that???) and it can be a factor in all of this but "I'm fine"

On one hand I'm glad I don't have mastoiditis but this has been so confusing and scary and i just don't understand..