What should I expect?

Ears, nose and throat
1

Last week I was diagnosed with a cholesteatoma. I am a 16 year old male, and have NEVER had a problem with my ears. No ear infections. But I started having problems starting January this year. At first we thought it was a ear infection, but now we know it wasn't. I lost my hearing for months in one ear, and then out of nowhere I have some of it back. Current hearing loss is pretty minimal, or maybe I have gotten more used to it. But it is a lot better than my hearing before I think. When j was diagnosed it was after months of meds to clear up my ear as it was inflamed and doc couldn't see eardrum. I just had a CT scan yesterday and I am now awaiting the results.i have a few questions I'd like to ask people who went through my this before.

What should I expect from here on? When should I expect to have surgery? What should I expect with recovery

I'd like to gain a basic understanding on how this will affect me. This summer break from school was suppose to be a great one and I have a lot planned out, but this could change everything. I'm not so worried about surgery itself, just the outcome haha.

2

This is the best explanation I have ever seen... very detailed to say the least. Facebook also has groups that I have found very helpful. Look for 'Cholesteatoma the hidden disease'

http://entkent.com/cholesteatoma-and-mastoid-surgery/

3

Hiya Luke, it's hard to say when to expect surgery, that will probably depend on the results of your CT scan, I waited 3 months for mine. In regards to recovery from what I have read most people have a very quick quite pain free recovery, I unfortunetley didn't but I believe I'm in the minority so wouldn't want you to worry.

I was seen fort nightly whilst I was waiting for my surgery which I welcomed, having the infection drained helped the pain for a little while after.

Don't get disheartened, take each day as it comes and I'm sure you will get to enjoy your summer break. Good luck!

4

Thanks for the quick reply!

So the time until surgery varies. Good to know I guess. I am torn wether id want it during summer, or during school though. I can only see it being a big annoyance if it is done during the school year.

Yup! Have to take things one step at a time. All I can hope is that is goes well and has minimal impact. Thanks!

5

I would get it done this summer. Recovery is different for everyone mine lasted about a month after the first surgery. But my ear looked goofy for several months after that so i always wore a winter hat to cover the gross looking ear. Be ready for a change in hearing. It is really weird at first having such limited hearing in the ear but you adjust. If you want to talk more shoot me a DM. Btw I am 23 and have my first surgery almost 2 years ago.

6

And I did just that! And ohhhhh man what a story it is. So much has changed...

I had the operation July 5th. Checked into hospital at 10am. I walked into the OR at 11am. Surgery lasted 5 hours, and I took another 3 hours just to go home. Long day for my family. Surgery itself went well, but the outcome wasn't what was expected, and it is much worse.

From CT scan and hearing tests we predicted the chokesteatoma wasn't too large, and hadn't done too much damage. During surgery though they were shocked. They removed cholesteatoma that formed a mass the size of a grown man's thumb. Shockingly huge compared to my ear and head. It was in my mastoid, and around my ossicles. It eroded my incus, which is surprising with how good my hearing was before. At least to me it is, but maybe cholesteatoma consucts sound well enough. So they removed my incus as well as a bunch of mastoid bone. And that means I go in for a other surgery in a couple months. Right in the middle of the school year....I am kind of worried about that but I should be fine.

At first I didn't know all this though. First few days home I was thinking once the packing was removed I would have my hearing back. I thought they removed a small cholesteatoma, and left my ossicles intact. Whilst getting my bandages changed though, my mom let something slip. They were waiting to tell me that when my packing was removed, I wouldn't have hearing, and that I'd need a second surgery. My Mom told me this and I was in disbelief. It felt like the divorce talk all over again. I just couldn't believe it. Was kind of mad they didn't tell me earlier, and that they held that back from me.

But anyway. Your comment was dead on, minus the ear looking weird thing. I didn't notice a thing different besides that lobe thingy where they took cartilage from looking different. You can see, and feel, where they cut a circle out. Creeps me out lol. And then of course hearing loss. Missing a ossicle pretty much makes me deaf in the ear. I hear a little though, which is great so I can tell where sounds coming from sometimes. I've gotten used to it now, but I'll like when I get most my hearing back there. 3 other annoyances are the numbness in my ear, taste loss, and the freaking tinnitus. Ear numbness slowly going away, and so is the taste lost, but this tinnitus is gonna be the death of me. I've had trouble sleeping, and it really is screwing with me. Can't get used to it, so I hope I won't have it forever.

Wow, this is a LONG reply. But as of now I am living almost a normal life. I miss swimming a lot, but hopefully I can resume that after my next appointment in a few days.

7

And I can figure out how to DM. I wanted to ask you something....

How are you doing currently? What is your state of hearing? Do you have tinnitus? Do you need a second surgery?

Ever since my surgery I feel bad about everybody who is battling this. There needs to be more awareness for cholesteatomas. I really hope you are doing well.

8

Hi Luke

I hope you are feeling better now and the tinnitus has quietened down! It can be very distressing

I had a cholestoma removed 23yrs ago, in left ear. I went scuba diving in Australia 6 months later, wonderful experience, probably not a good ldea, though fortuantely enough suffered no consequences! As years passed, I noticed my hearing getting worse, little hearing in the ear that had cholestoma, but hearing in my right ear got worse, though no ear infections. Eventually got a hearing aid for right ear. Everything went well. Got used to wearing hearing aid. It was easier to communicate at work and socially, and I was a lot more relaxed.

A year year later I got an ear infection, so could't wear hearing aid. Thus tinnitus got louder as well as not been able to hear drove me to dispair. Then it began to ease. It later emerged I had a cholesoma in my right ear. I had it removed at the end of May and had bad tinnitus but it dose begin 2 ease off. Relaxation, yoga walking are all helpful. Hearing aids block out tinnitus.

I understand what you are going through

Talk to someone be it your mum, dad, GP, councillor. It is OK not B OK!

Just wondering dose anyone suspect that wearing a hearing aid

may compound a cholestoma , baha may be better for health of ear?

Wishing you all the best

Ashling

9

Thanks, Ashling.

Unfortunately the tinnitus hasn't really went down at all. I had my 1-month post-op today, and doc said that it most likely won't get better until I have my hearing reconstruction surgery.

Also, today while examining my ear he noticed my ear canal was scarred, and was closing up. He told me he would have to numb it up right then and there, cut out some tissue, and insert packing to make sure ear canal heals correctly. Was probably the painful thing with this cholesteatoma so far! I also have to do drops for 2 weeks again until packing removed. It just never ends...

Luckily, I have a lot of people around me that are comforting me. People at work, friends, and of course my family's. Makes you feel a ton better when you know people care about you.

I wish you the best as well!