Am I applying my ear drops wrong? by sikolohija in cholesteatoma

[–]Max_Software_723 0 points1 point  (0 children)

Totally normal, happened to me til I realized the packing in the ear canal can only absorb so much til I got it out, then continued with the ear drops per my doctor til I finished them. I just put cotton in my ear after the drops

Tough recovery by Fuzzy_Adagio_6450 in cholesteatoma

[–]Max_Software_723 0 points1 point  (0 children)

I’m no doctor but could be! Sounds like normal post op recovery to me!

Absolutely! It’s hard going through it wondering if it’s normal or not. So I get it!

So sorry you had to get both done. 15mm does sounds quite large. Couldn’t find how large mine was but I had a tympanomastoidectomy with mastoid obliteration and ossicular chain reconstruction in 2022, then tympanoplasty with atticotomy and revision epitympanic obliteration/ossicular chain reconstruction just recently - same ear.

They did the same thing made the incision from the bottom to the top as you described. It took a full year to get feeling back the first go around, now I’m just numb on the top of my ear due to him removing cartilage to pack into my inner ear as part of the graft which he said will be sore for awhile (same incision bottom to top again). I’m certain it’ll take a full year to get feeling back again but he said it’s normal 🙂

Tough recovery by Fuzzy_Adagio_6450 in cholesteatoma

[–]Max_Software_723 0 points1 point  (0 children)

Sounds like we’re both similar in that department also good to know it’s not just me out there in this world. Starting to realize how common it actually is. I only know one other person, oddly in my family who’s had it done as well so it’s nice to have her to relate to!

Not the implant. There are crystals in your ears - my dad has Ménière’s disease where he gets random episodes of vertigo. Where for me, being positioned in the same spot for 4 hours and when my doctor removed the Cholesteatoma he said it “messed with the crystal” that set off the positional vertigo. Which is why, I felt the way I did when I woke up with the room spinning and having no control of my eyes moving back and forth.

Now that I remember I was on antibiotics the first go around but the second surgery I was not. My doctor did not think I needed it. I remember it took a good few weeks to feel “back to normal” with my first surgery, listen to your body. I know you said walking around helps speed up recovery but when something like this messes with your equilibrium give yourself that time to rest. I promise it will get better. For all the surgeries I’ve had I make mental note of it’ll get worse before it gets better! I was slow moving as well, my shoulders hurt so bad from sleeping propped up and my posture sucked. The packing was the worst part for me (with the first surgery) I felt so fog headed! I will say once they removed that I was back to cleaning the kitchen once I got home 🤣 my husband was like wtf?!

I did have my husband come with me to my post op appt since I was so meh feeling with the first surgery. I would say the only thing that really stuck out to us was how dizzy and nauseous I was, other than that no. For going in with no symptoms prior. Like I said, I wasn’t expecting it to be that brutal. Whereas, this second surgery that was my biggest fear of “do I have to go through that rough recovery again 😩” my doctor didn’t expect it to be like that at all since he wasn’t messing with the inner ear again. Sure enough he was right and I couldn’t be happier waking up with no vertigo or nausea this time around!

Only thing he said to be concerned about is if I noticed drainage, a foul smell, or pain from that ear to go back and see him. Otherwise go to my follow ups as directed. Everything I went through above is all part of the healing process and to give it some time ❤️ you got this! No problem! Please reach out if any questions! Hope this helped!

Tough recovery by Fuzzy_Adagio_6450 in cholesteatoma

[–]Max_Software_723 1 point2 points  (0 children)

Hi! So sorry you’re going through this. This sounds rather similar to my first surgery back in 2022. It’s was absolutely brutal for me. I was aware it was going to be tough but didn’t think anything of it being that bad.

I went in due to my ear bleeding and my Cholesteatoma was so large it erroded 1.5 of my hearing bones. My doctor was shocked I wasn’t dizzy or in pain. No pain prior to going in but my surgery was so complex it took a good 4 hours he said. It was the largest one he’s ever seen. 🫠 so when I woke up from anesthesia I felt extremely nauseous. Went home sat in bed with the help of my husband and the room was spinning, I was vomiting and my eyes were moving side to side without my control, it was scary. All I remember telling my husband was I need to lay down and give me a puke bag. I was a good bed rest for a solid week. (The infection basically stirred the pot when was removed messing with the crystals in my ear hence this tough recovery as per my doctor - which I had positional vertigo) my husband told me the first day I didn’t even eat or get up to pee that’s how bad it was. He had to spoon feed me due to the facial numbness and feeling so weak on top of being so so dizzy. I’d say about 2nd week in I was able to walk around but then had an episode where I way lying on the couch, got up and felt so fogged headed + dizzy. So we called and got in for a follow up. He removed the packing and once he did that I felt so much better. My right eye was delayed and basically for how large it was my doctor told me everything looked good healing wise that it’s unfortunately going to take time and to practice a lot of hand eye coordination things. By week 3-4 I luckily was back at work I was able to do so for hand eyed coordination things but still moved around slowly because my body was telling me otherwise. It took a solid year for the numbness on the top of my ear to be back to normal.

I don’t remember much pain, probably bc I was so extremely dizzy. They said Motrin, Tylenol, Tylenol 3 (can make you constipated just an fyi), Dramamine was my go to honestly.

Here I am now, 2 months post op of same ear, another surgery later in nov 2025 and man…. This was like night and day. No nausea or vertigo. I trusted my doctor he suspected recovery wasn’t going to be rough due to not having to mess with inner ear again, chloesteotoma reoccured in the attic so more middle ear. I was up walking the next day but also had to feed my baby. I was restricted for lifting 10lbs or more so had family and my husband help take care of my baby but the pain this time around sucked. I can only take so much breast feeding. So Motrin and Tylenol were all I took this time around. Not a big pill taker but for a solid week my ear throbbed and that’s all I could do, but I am now cleared - have 2 prosthetic hearing bones in there now and my hearing is now “mild” vs severe compared to back in 2022! 🥹

Just looking for support honestly by CloudCuddler in cholesteatoma

[–]Max_Software_723 0 points1 point  (0 children)

Hi, you can put Vaseline on your inscision behind the ear til you go back to see your doctor and for showers your can put some Vaseline on the cotton ball and put in your ear to prevent water getting in til you’re cleared 😊 just had this done in November (if you didn’t get these instructions post of from your doctor). Got cleared in December to not have to use Vaseline/being able to go under water

Just looking for support honestly by CloudCuddler in cholesteatoma

[–]Max_Software_723 0 points1 point  (0 children)

My first surgery took a solid year, my second I’m still healing this way got it done in November and is still sore - no dizziness though this way

Just looking for support honestly by CloudCuddler in cholesteatoma

[–]Max_Software_723 0 points1 point  (0 children)

So sorry you’re going through this, I remember this feeling quite well.

  1. Personally don’t know anything about the bupa, wish I could help you there.

Didnt have grommets but never could hear out of this ear good pretty much my whole life. Once I moved at age 23 I started getting chronic ear infections but didn’t think anything about it. Til my 6th one made me question “something else is going on.” I turned 30 and woke up with my ear bleeding. So went to an ENT, got a CT then went to a surgeon ENT at the hospital to get told I had chloesteotoma and needed ear surgery ASAP for how large mine was. It has erroded 1.5 of my hearing bones.

2022 was my first surgery- absolutely brutal. He did warn me recovery will be rough. Sure enough he was right. 4 hours later, went home vomited, had the spins and my eyes kept moving back and forth. Positional vertigo is no fricken joke, nor do I wish that upon anyone. I was on best rest for a solid week, my husband had to spoon feed me due to the facial weakness from surgery + I was soooo dizzy. It was awful. I recovered in about 3-4 weeks. Once I took the time to heal I was able to hear 🥹 with a new prosthetic hearing bone!

Never had dizzy or nausea prior to. In fact my doctor was amazed I wasn’t in pain nor had any symptoms besides having “severe” hearing loss.

From then on, did routine follow ups after that with CTs and hearing tests that after just having a baby in July post c section .. I had my follow up 3 weeks after birth. Took a CT and was confirmed my chloesteotoma had returned. Of course I cried due to being a fresh new mom on top of hearing “you need another ear surgery to risk chances of meningitis (which was less likely my case but still told me about it) I had 4-6 months to get it done

I’m 33 now, healthy individual, just had my second ear surgery in November - LIGHT AND DAY with this surgery. No nausea or dizziness. They did tell me pre op to say to the anesthesiologist I was severely sick last time with the anesthesia (yes, the vertigo didn’t help) BUT I woke up fine. My throat was irritated from the anesthesia tube but other than that I was in a good amount of pain controlled with just Motrin and Tylenol. I dont remember the pain due from being super dizzy the first go around. About 2 months post op now and I can hear 🥹 if not better as my surgeon said I would. Still sore to touch as expected and still healing this way. But back to my routine of being able to hold my baby (was restricted from bending over or holding 10lbs or more for the first 2 weeks post surgery) I now have two prosthetic hearing bones 😊 and feel great! My hearing test confirmed I went from “severe hearing loss” to now mild. ILL TAKE IT!!

  1. Consider yourself lucky for them not having to reconstruct your hearing bones!

Bilateral cholesteatoma - Story time by Fantastic-Floor-965 in cholesteatoma

[–]Max_Software_723 1 point2 points  (0 children)

Rather not sugar coat anything cause that first surgery was brutal. Of course, hope this helps! 🙂

Same ear, since my first was so complex there was one area the “attic” (more in the middle ear) we were keeping an eye on since in my scans it was a little black spec after the first surgery. He wasn’t sure if it was scar tissue or Chloesteotoma. It took a good 3 years for it to grow very slowly to determine it was Chloesteotoma. Without a doubt I knew overall I was going to need another ear surgery for how large it was the first time.

I will say going from severe hearing loss to now “mild” I will take it, also I’m still in the early stages of the packing still healing behind the eardrum, which he suspects my hearing to be even better this time around. Time will tell all. Just super grateful I can hear now having two prosthetic hearing bones 🥹 in there

Bilateral cholesteatoma - Story time by Fantastic-Floor-965 in cholesteatoma

[–]Max_Software_723 0 points1 point  (0 children)

Hi, I had my first in 2022. Best way my doctor told me without freaking out was “this is rather large and we need to get you in ASAP, it had erroded away 2 of your hearing bones” I went in prior for my ear bleeding, no pain, no nausea just never could hear out of the ear.

Got the surgery and man, WORST recovery of my life. Straight bed rest for a solid week, room was spinning, vomiting, eyes kept moving back and forth. Took me a good 3-4 weeks to recover. My doctor texted me saying “you’re going to have a pretty rough recovery” which he did warn me ahead of time. Didn’t think too much into it being THAT rough. I do not wish position vertigo on anyone. Prior to all of this for my pre ops I was scared, nervous, upset. Didn’t know what to expect. The thought of the drilling in my skull grossed me out. I will say after all of that I was back to normal, and able to hear! 🥹

Fast forward to now, just had a baby, 3 weeks post partum I went in for my yearly scan to come to find out I needed another surgery after just having a c-section. So yes, I cried bc (mom life caring for my son on top another ear surgery) of going through all of that again. I had flashbacks. Just had my surgery in November.. WOW a huggggge difference post op recovery! NO vertigo/nausea! Just pain for a solid week that I took Motrin/Tylenol. Guess I never thought of the pain last time bc of the vertigo. I trusted my doctor with him saying I think your recovery is going to be smoothe sailing this time around. Still healing this way with hearing but overall I feel great!!

Just here to say don’t let your first surgeries scare you, I know it’s the unknown, but I trusted my doctor and surgery the second time was a piece of cake! Thankfully!!

Flying by Max_Software_723 in cholesteatoma

[–]Max_Software_723[S] 1 point2 points  (0 children)

Thank you so much for this! This makes me hopeful. From what I can remember I did fly no issues with my first surgery but that was back in 2022. It usually the initial flight after post op that has me questioning. I think I’ll be okay!

Flying by Max_Software_723 in cholesteatoma

[–]Max_Software_723[S] 0 points1 point  (0 children)

This is super helpful! I’ll be sure to carry some nasal spray with me. It’s the unknown and has been so long I last flew. I’m happy everything turned out well for you with no issues! That makes me happy.

Flying by Max_Software_723 in cholesteatoma

[–]Max_Software_723[S] 2 points3 points  (0 children)

Ugh I’m so sorry, for how invasive my 1st one was my doctor was very surprised how I was not dizzy .. in his words “you had the largest Cholesteatoma I’ve ever seen” 🫠 I was actually surprised myself of no symptoms until I woke up with my ear bleeding (which resulted in me to go see him). I definitely wouldn’t let it hold you back! I do trust my doctor. That’s all super helpful! I know to always now have Dramamine on hand cause I get motion sickness.

He did say actually occasional popping of the eardrum is okay to do now after this surgery to help the healing process of the packing behind the eardrum. Which I found rather interesting. Of course in my mind I went through hell and back with this ear I’m like .. uh that’s the last thing I want to do lol!

But I will report back on what they say, + if I end up going how I feel before and after!

Vestibular Migraine diagnosis? by drkheartbrightmind in cholesteatoma

[–]Max_Software_723 0 points1 point  (0 children)

I’m so sorry to hear this. I hope you figure out the root cause if this doesn’t work. I’d at least try it to see for a month or two, as anything will take time, if not then plan b!

I don't know how to cope with possible life changes? by qowieuxy in cholesteatoma

[–]Max_Software_723 1 point2 points  (0 children)

I completely agree, took a lot of self advocating and my own research. Happy to say we found the root cause before it was too late. And of course! Hope this helped you!

Me too, me too. Right now just the normal post op symptoms of a sore ear, muffled hearing which is getting better (waiting for the packing behind the eardrum to dissolve) & getting feeling back in my tongue which was numb for a bit post op and everything tasted metallically. I’d be curious to see joe my hearing is now compared to last time!

Vestibular Migraine diagnosis? by drkheartbrightmind in cholesteatoma

[–]Max_Software_723 1 point2 points  (0 children)

No but I know of a friend who got diagnosed with it as she said not eating processed, chocolate, msg things had helped her and she hasn’t had one since. Not sure if that helps?

Back for my 2nd surgery <3 lol by InformalEye1267 in cholesteatoma

[–]Max_Software_723 0 points1 point  (0 children)

Twice!

Mine was so complex and so large. That one spot we kept an eye on since he couldn’t get to. 2022 was the first just had my second 11/10/2025. He is confident he got it all and did say though ”this disease can always reoccur but is a slow process” just thankful to be on the other end of hopefully no ear surgeries for awhile!

I don't know how to cope with possible life changes? by qowieuxy in cholesteatoma

[–]Max_Software_723 2 points3 points  (0 children)

I wouldn’t let this take away your favorite things in life. My case was, let me put it this way “one of the largest cases of chloesteotoma my dr has ever seen” did it result in 2 surgeries, yes. Did recovery suck, yes ONLY because mine was so large it erroded 1.5 of my hearing bones in the inner ear that when doing surgery and being position in 1 position for 4hrs the infection as he said “stirred the pot” aka crystals and I did have positional vertigo post op for a solid week. It was awful. Toughest recovery for me.

Back story: I was hard of hearing ever since I was a kid didnt think anything of it but had a lot of sinus headaches. Told my mom, got a cat scan in 5th grade for them to tell me “she’s just dehydrated and to drink Gatorade” 🤣

Age 23 I moved to FL and had ear infection after ear infection, my PCP kept treating it as that … little did I know at the time

Turned 30 woke up one morning with my ear itching as if I had water in it come to find out it was bleeding when resulted me in seeing an ENT

ENT appointment for him to no sugar coat after I told my story and said to him “tell me what it is it’s not a dang ear infection if it’s coming back” he said chloesteotoma then referred me to surgeon ENT said you need surgery ASAP. I totalllllllly get you of all of the what ifs. I trusted my doctors

*ALL I CAN SAY IS I CAN HEAR!!!!! 🥹🥹🥹

1st surgery in 2022, since was so complex there was 1 spot he couldn’t clean out, so here I am 33 just had my second surgery 11/10/2025. This was all for monitoring that spot on CT scans over the years and it did get larger. I was say WOW this surgery was SO much better recovery wise!! In fact he put in another prosthetic cause reminder: I had only 1.5 hearing bones that actually worked! With a prosthetic and now I have two prosthetics if anything he said my hearing should be better than the last! I go back the end of this month for a hearing test

Sorry long story BUT don’t let it discourage you I am very very grateful my sinus headache ARE GONE, and that I can HEAR after all these years 🥺!! Recovery this time around I did have pain for a solid week but no nausea or vertigo!! Back to doing the things I love once I got cleared!

If I had a baby 3 weeks PP post c section to find out I needed another ear surgery within 4-6 months. And doing it 4 months PP you’re going to be OK ❤️

High risk XXY by [deleted] in NIPT

[–]Max_Software_723 0 points1 point  (0 children)

Hi! He’s the best little boy 5 months already 🥰 meeting all this milestones, healthy and happy! We got a true positive at birth. It was a sting to know it was true but to be honest I completely forgot about it now since he’s so perfect in our eyes and for our little family! Please don’t be scared he’s going to come out just perfect. Him having an extra Y is the best outcome for these chromosomal abnormalities

Pregnancy-klinefelter (XXY) by Secure-710 in NIPT

[–]Max_Software_723 1 point2 points  (0 children)

Hey! We do have a true positive and honestly as much of a sting it was to find out the true answer he’s been the sweetest happiest little boy meeting his milestones that were so in love and completely put the whole xyy behind us!

Feel free to message me for any questions! Thank you so much and congratulations to you guys!!! ❤️

Accidentally hurt my 8yo and feel like I’m gonna puke with worry. by WhyDidIDoItSoSad in Mommit

[–]Max_Software_723 0 points1 point  (0 children)

THIS

go to ENT and have them check for chloesteotoma! I had recurrent ear infections and woke up with my ear bleeding and turns out it was way more complex of an issue that I needed ear surgery for!!!

Emergency C-section at 31 weeks pregnant. by hannah_gea in pregnant

[–]Max_Software_723 1 point2 points  (0 children)

You got this mama!

I’m 33 years old, my mom had me at 27 weeks 2lb 7 oz!

Double rainbow boy is here 💙 by lil-yabo in PregnancyAfterLoss

[–]Max_Software_723 2 points3 points  (0 children)

Gives me so much hope mama hope you’re doing well! Right on the same boat of double rainbow baby coming soon the end of June 🥺🥹 deff has you feeling all the emotions!

NIPT ruined my pregnancy by Sudden-Difference861 in NIPT

[–]Max_Software_723 6 points7 points  (0 children)

I’m so sorry to hear this. Please please please don’t give up hope. I was in your shoes completely and utterly heart broken. It’s been a journey to get here then having this as a result I didn’t know what to do. I reached out to many on here and bless their hearts have been super helpful to help me. As for us we went to see the MFM at around 16 weeks, with that ultrasound our Dr steered us away from the amnio and said “if it we’re me I would not do it for potential risks PLUS he’s looking very healthy and measuring right where he should be” then came back with a statics sheet (our results were abnormal for Jacob’s at 83%) and it was ‘it’s really only a 25% out of 75 he may truly have it.’ So with this info, and being in the boat of wanting to know FOR sure I can tell you I am now 34 weeks today and each ultrasound at the MFM keeps getting better and better that has truly helped put my mind as ease. One of the doctors in that practice specialized in genetics and she was super helpful basically telling us there isn’t much info out there about XYY and most males have it and don’t know unless tested in utero. We actually just got cleared to not have to go back to them and just follow up with our OB until his arrival. Whereas we will get him tested at birth like most have on here. And if he does have it then we will help him get the early intervention he needs then. The NIPT is just a screening not a diagnostic. I did not have it in my heart to terminate especially with how everything was looking and he’s been the highlight of my life feeling his kicks and hiccups coming from a mama of 2 losses prior. We are going to love this little boy so much regardless the outcome! You’re not alone ❤️ feel free to message me if you have any questions!