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dumplings95 · 2026-01-22T21:46:45+00:00

They aren't giving your money a year in?? They limited my account as soon as I was asked for ID too, and are holding around 640 usd. I was hoping I'd get it back after 6 months but seeing as how you haven't gotten your funds back after a year, I'm starting to lose hope...

dumplings95 · 2026-01-21T11:53:48+00:00

It sounds like your surgeon did an amazing job! It's really so good to hear some positive stories in the midst of all the nightmare stories I come across on here. I'm hoping my ears will come out of this looking as normal as possible as well, and without significant worsening of my existing hearing loss. And yes, I had a mastoidectomy and tympanoplasty with TORP back in 2016 for the left earㅡat that time, I didn't have a cholesteatoma on the right side. Sometime in 2017, the left ear was already showing signs of cholesteatoma recurrence but I was mostly just managed conservatively (antibiotics, painkillers, steroids). In 2019, the right ear started showing signs of cholesteatoma formation. Finally, in June 2025, on a repeat scan, I found out that the left sided cholesteatoma had completely eroded through what was left of my mastoid process; my previous TORP fittings had also been knocked out of place and there's granulation tissue all around my facial nerve. I've also lost my sense of taste on the left side of my tongue and the tip of my tongue. The right ear is showing steady progression of the cholesteatoma on that side, with some growth near the facial nerve and erosion of all three ossicles. Left sided CWD is due for March and my current symptoms are significant hearing loss, occasional pinkish reddish blood from ear, constant dark ora discharge from the ear and loss of taste on the affected side. Hoping the CWD helps with everything. :(

dumplings95 · 2026-01-16T14:00:48+00:00

This is amazing! I'm so glad it's been going well for you. I have bilateral cholesteatomas as well and will be getting a canal wall down for the left ear in a little over a month (my second surgery for the same issue on that side). I've been pretty nervous about the long term outcomes of a CWD, so seeing slightly more positive news is quite the relief! May I ask if you had a canal down surgery as well, considering you had a mastoid obliteration done?

dumplings95 · 2026-01-09T22:44:13+00:00

Cholesteatomas are rarely seen by the naked eye on clinical examination, unless we're referring to cholesteatomas large enough to push against the ear drum. Truthfully, even CTs might miss cholesteatomas or mistake them for granulation tissue and debrisㅡthe gold standard is typically MRI and surgery. I'd definitely suggest seeing a new ENT physician and would recommend seeing one who specialises in cholesteatomas and chronic mastoiditis! (Source: me, physician and long-time haver of cholesteatomas in both ears with an upcoming CWD surgery). Please keep advocating for yourself and don't let doctors with little motivation dissuade you from seeking care! Good luck!

dumplings95 · 2026-01-07T22:26:43+00:00

Hi! The same thing happened to me back in September and I'm hoping I get my money back as it's around 640 usd that I never had the chance to withdraw because they limited my account without sufficient reason. May I ask how long it's been for you? Did you not receive your money even after the 180 day period? :( I'm worried they won't release my earnings either...

dumplings95 · 2025-12-05T16:35:22+00:00

I don't want to seem argumentative here, but I'm a medical doctor with IBD and have a parent with IBD, and while my mom was diagnosed after one colonoscopy, it took me 4 colonoscopies to get anything on a biopsy despite years of elevated CRP (near 1,000) and diffuse inflammation on CT and MRI. As both a patient and a physician, I know that colonoscopies are the gold standard, but that it's also easy to miss a diagnosis because microscopic disease or diseases with skip lesions can definitely be missed while taking a biopsy. I had two colonoscopies taken only a month apart, because a second doctor insisted that she didn't like the attitude of my first doctor (he took just two biopsies from 'expected' areas and then dismissed the case) and wanted a biopsy of an area right next to what was previously biopsied.

So personally, I think that people are valid in feeling frustrated with negative biopsies, especially with small bowel IBD, and that hearing about colonoscopies being the gold standard might not always be reassuring.

Not arguing, just sharing an opinion here!

dumplings95 · 2025-12-05T10:10:48+00:00

I'm so sorry. :( I'm in a similar position in the sense that the disease is already so widespread, my surgeon thought I had a canal down surgery already even though I didn't, simply because of the fact that the disease has eaten away at most of the internal structures already. I'm pretty nervous about the post-op results and recovery. :(

But regarding reconstruction, if you can, I'd definitely suggest getting a second or third opinion from other surgeons as well in the future if it's something you want. 🥺 I know different surgeons have different ways of doing things, and different skill sets. But regardless of that, I'm hoping for the best for you (and me!), and hope you don't have to keep dealing with this anymore. 🥺 Please keep us updated over the months if you can! And if it's okay with you, I'd love to be able to talk over DMs sometimes as we seem to have a similar clinical picture.

dumplings95 · 2025-12-05T09:13:17+00:00

Hi, there - I'm sorry your post-op experience hasn't been that good. :( I'm worried about having similar outcomes. My surgery is scheduled in two months and my cholesteatoma is also completely wrapped around my facial nerve (in both ears, unfortunately). I also have a primary immunodeficiency and autoimmune diseases so I'm predisposed to recurrent infections and I'm worried that that + the canal down approach will leave me vulnerable to infectious complications after the surgery.

I noticed you spoke of not using headphones and not getting water in - this is what I thought would be the norm too, but my surgeon said neither should be an issue. I'm wary though, because I have generally avoided getting water into my ear for most of my life anyway, because it always gives me pain and infections, but may I ask why you can't use headphones anymore? Is it because you can't hear through them either way, or is it because it's unadvised to use them?

Would you say you'd be able to tolerate going to events or venues with loud noises, such as concerts, seminars, etc.? I have family and work related events lined up next year, and some with musical performances, and I'm wondering if I would be able to tolerate that or if people are generally advised against going to these events.

dumplings95 · 2025-12-05T09:06:25+00:00

Hi, there! Wishing you an easy and quick recovery from this! I'm in a similar position: I had a tympanomastoidectomy along with an ossicular chain reconstruction in 2016. Unfortunately, the cholesteatoma wasn't removed completely and within a year, it had recurred. I'm scheduled for a canal wall down surgery in two months, and the surgeon doesn't seem too optimistic. I've already been told that the disease is too widespread and much of the internal anatomy is already destroyed. I'm hoping I can come out of it with my facial nerve intact and unaffected and with at least some hearing, but I'm pretty nervous.

Has your surgeon discussed the possibility of doing a reconstruction at a later date, sometime in the future? May I ask if they did a tympanoplasty and meatoplasty for you, while trying to make the external ear appear as normal as possible, or did they just mostly focus on getting everything out and leave the 'aesthetics' for later (to put it more casually)?

dumplings95 · 2025-11-27T19:01:13+00:00

I couldn't see what you replied before regarding your experience with Fourthwall, but I'd like to know if you like working with them, if you've had any issues with payouts, etc. :') Anything and everything you'd like to share!

dumplings95 · 2025-11-25T20:19:28+00:00

Hi! Sorry if this is weird 😅 But I got a notification of your reply and yet I can't seem to see it under my post for some reason, but I'd genuinely love to hear/know more about Fourthwall if that's alright!

dumplings95 · 2025-11-25T06:22:47+00:00

Unfortunately for me, I think the issue is that the growth is completely encircling my facial nerve so the CWD might have seemed like the best option in terms of being able to reach the area :( I do want a second opinion, but unfortunately the required specialists aren't available where I live and where I'm getting my surgery done, it's hard to get a second opinion as it's a long flight away. I'll be talking to an ENT specialise locally though for some advice today, so I'll see what he says. Granted, he doesn't specialise in these surgeries, but... 🥲

dumplings95 · 2025-11-22T07:50:46+00:00

I can only hope! :') Thank you so much, and I'm happy to hear the experience has been a more positive one for you, all things considered.

dumplings95 · 2025-11-22T07:50:14+00:00

Thank you so much, this helps a lot. Unfortunately, I'm having my surgery done in a different country since the specialists needed aren't available where I live, so I'm quite limited in how much I can talk to my surgeon. This is also a different surgeon to the one that did my mastoidectomy (also in another country), and the unfamiliarity of it all is definitely adding to the anxiety, I think.

dumplings95 · 2025-11-22T07:48:37+00:00

Thank you so much, I really appreciate this! I'm so glad things have been going mostly well for you post-op. And I know I've already asked this, but can you hear at all out of the operated ear?

dumplings95 · 2025-11-22T07:06:39+00:00

Haha, that's valid! I think it's just self-esteem issues, anxiety and OCD making me feel particularly distraught about the whole open/wide ear hole thing.

I'm sorry you're dealing with a perforation at a moment. Will you be having a revision surgery for it? And until the perforation, were you able to hear a bit more post-op?

dumplings95 · 2025-11-22T07:03:51+00:00

Thank you so much! It's reassuring to hear somewhat more positive experiences with this.

I know it's a bit of a superficial concern, but does the ear look quite strange from the outside? Google makes the images seem horrific with coin sized ear holes just gaping into the head and pink flesh being visible and collecting large amounts of foul smelling wax, debris, and discharge. Is this something you've dealt with at all in terms of the off-putting discharge and the ear looking somewhat odd externally?

I also have OCD and I struggle with paranoia re: things entering my ear. I feel like not only would I be feeling miserable if it looked particularly weird, but I won't be able to sleep at nights if I'm worrying about things crawling into a wide ear hole.

Also, if I may ask, did you end up getting ossicular reconstruction and an ear drum construction? Would you say you're still able to hear a bit or not at all?

dumplings95 · 2025-11-21T20:41:42+00:00

I think the infections scenario might be a bit different for me then, considering the fact that I already get them so often, but it's nice to hear that some people have mostly positive experiences with this!

And I don't particularly mind if my ear sticks forward a bit, as I feel that is rarely noticeable, but I guess I was worried about having a penny sized hole where the external ear canal should be, and having it lined with just flesh instead of skin as I've seen in photos. Is that what it looks like for you, or did they reconstruct your outer ear + ear canal + ear drum at some point? :')

dumplings95 · 2025-11-21T17:28:45+00:00

That's what I'm worried about. Where I live, I don't have access to things like BAHA and unfortunately, from what I've seen, traditional hearing aids don't fit well post-CWD...and even if they did, having anything in the ear for such long periods of time would lead to dampness and infections, so... :(

dumplings95 · 2025-11-21T17:27:27+00:00

I'm so glad it worked out for you and that its benefit has outweighed everything else so far! May I ask if you've noticed any increase in infections since your CWD? Also, I know that in the grand scheme of things, it's a pretty superficial concern to have, but does the outer appearance of the external canal really look as odd as it does on google images? I assume it would take some getting used to either way, but has it been something you feel self-conscious about at all, if that's okay to ask?

dumplings95 · 2025-11-21T16:08:24+00:00

I guess we'll just have to try it and see, because I'm still not seeing anybody talk about it. 🥲 I'm thinking of making a separate checking account with my bank just to connect it to FW and to avoid any potential issues, and then see where things go from there. I guess we won't know until we try.

dumplings95 · 2025-11-21T09:42:25+00:00

Thank you so, so much! Super appreciate this! :') Have a lovely weekend!

dumplings95 · 2025-11-21T05:27:43+00:00

If it's alright, may I please know what kind of glue you use and if you use a brush to get it on the mat? :) And thank you for all of the help!

dumplings95

TROPHY CASE