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 on: September 22, 2013, 10:39:18 PM 
Started by hawaiibound1 - Last post by Feismom
Update:  Daughter had second surgery in early August to explore Osculatory ear bones...  Dr. went in using new equipment entering under eardrum.  According to doctor, it looked great.  No cholesteatoma and earphones were in good condition.  Daughters hearing loss is about 23% and has never improved after cholesteatoma was removed a year ago.  Blessed that cholesteatoma grew downwards instead of upwards.  Going back in November 2013 for another hearing test.  Hope for some improvement!

 on: September 22, 2013, 01:18:43 PM 
Started by meagan - Last post by meagan
Hi everyone.

I had a CWD radical mastoidectomy about 12 months ago. My ctoma was worse than originally suspected and I lost all my hearing bones, as well as my ear drum. The recovery process was tough at first, but I think my life has pretty much returned to normal (besides some slight dizziness and obviously hearing loss).

About once a month I use my iphone to video tape my ear canal and see what it looks like. This past week I was doing this and noticed a white pearl looking thing in the back of my ear. I immediately thought it was puss and I had an infection so I emailed some pictures to my ENT. He told me it looked like a keratin pearl and made an appointment for me the following day. He takes a look and says it is in fact a keratin pearl and that he should be able to easily remove it. There was nothing easy about it and it was painful and bloody. Apparently my ear drum keeps growing back, and this 'pearl' was growing out of my eardrum, towards the entrance. My dr says we need to monitor it, and I have another appointment 2 months from now.

My question is this. I have yet to find any information on 'keratin pearls' after cholesteatoma surgery. I did find something called a keratoma, and I found an article about how a keratoma and a cholesteatoma are virtually the same except a cholesteatoma means there's bone erosion, and a keratoma means there isn't. So it sounds to me like this is a recurrence, I just caught it early, right? I feel like my dr just doesn't want me to worry so he's not telling me the whole truth.

Does anyone else have a history of keratin pearls? Or keratomas?

Thanks for reading Smiley

 on: September 19, 2013, 04:28:14 PM 
Started by dameyer - Last post by meagan
I had sharp pains as well, much different than what most people here describe. I continued to take vicodin (though less as time went on) for almost 3 weeks post surgery.

In regards to the numbness: I am nearly 12 months post surgery and there are still areas or my ear with some numbness. But it's a million times better than it was. The best way I can describe it is it felt like my ear was a piece of plastic on my head, like it wasn't connected to my body. It still feels like that a little bit, but again, a million times better than it was. Also, the cartilage in my ear hardened after the surgery and became less flexible. That has marginally improved but is still annoying.

Hope you're doing better, you're not alone!

 on: September 19, 2013, 04:09:29 PM 
Started by meagan - Last post by meagan
Sorry I didn't check this sooner!

Just a little update: I remember writing this original post thinking I would always have vertigo, and I'm sure there's someone reading this with the same fear. But I'm happy to say it got better! I no longer have any nystagmus, I don't feel like the world is tilting, I resumed driving on the highway 3-4 months post surgery, and and I even went stand-up paddle boarding (requires soo much balance, never thought I'd be able to do that again) over the summer! Unfortunately, I'm still dizzy, but mostly just when turning my head to my bad side and when I stand up too fast. But I don't think it has a major impact on my life whatsoever.

Shoop- I'm sure you've had therapy already, but for anyone else wondering, my balance and dizzy therapy went like this:

First my therapist advised me that I needed to improve my posture because having a balanced field of vision is important (I hope this makes sense). Try not to tilt your head to one side or up or down too much. I think this helped, but I had terrible posture to begin with.

The other main exercise I did went like this: I would tape a large capital letter E to a blank wall and sit in a chair about 4 feet away facing the wall. I would very slowly turn my head to each side (look to your left, then straight, then to your right) but kept my eyes on the letter E. Moving to my right side (my bad ear side) was really hard and would usually initiate nystagmus. She instructed me to just move even slower if it got too hard and stop if I needed to. I started out doing this 8-10 times each side 3-4 times a day and eventually increased to 20 times each side 3-4 times a day while standing (vs sitting).

Something that I really struggled with was driving or riding in a car. It was overwhelming because trees, cars, etc were moving too fast, so my therapist suggested I look straight ahead at the farthest thing in front of me and focus on that while in a car.

Sadly I was a bad patient and stopped going when I could function relatively normal again. I'm sure there are many more exercises but the E on the wall while turning my head really helped me the most. Also, my main problem was turning my head to my bad side, if your problem is different I'm not sure that exercise would be affective.

Steve-thanks for your reply, your recovery time sounds about the same as mine: 2 months before I was driving. Though I avoided the highway for longer because I couldn't quickly look over my right shoulder when changing lanes without getting dizzy.

Interesting that you mention your dizziness pre-surgery. I specifically remember being dizzy every morning when I first woke up for 3-4 years pre-diagnosis. I had just always assumed it was because I was still tired. I didn't even associate the two until my pre-op appt when my surgeon asked, "have you been experiencing any dizziness?".

Even now nearly 12 months later, I don't think I feel 'normal', especially when turning my head to my bad side, and closing my eyes like you mentioned. I'm hoping my balance will continue to improve like yours has Smiley

 on: September 19, 2013, 01:09:16 AM 
Started by HoneyBuns - Last post by Omynasa7

 on: September 19, 2013, 12:57:08 AM 
Started by aimeee98 - Last post by Omynasa7

 on: September 11, 2013, 06:26:04 AM 
Started by Sloanna - Last post by Sloanna
Hi everyone!

I have just been diagnosed with this nasty little critter after many years of ear not feeling right!I guess I am lucky that after only three visits to the doctors I was refered to an ENT doctor who diagnosed it straight away. I have to go back and have my ear cleaned out in about three weeks time so he can get a better look and then I guess it might be scans etc before referal for surgery.
I have read just about everything I can find about it, sometimes it makes me feel more secure, sometimes scared out of my wits!
The question that is most in my mind at the moment is how long do you have to wait for surgery in England? I'm sure it is different for everyone but a ball park timeframe would be most helpfull.
I have a holiday to New York over New Years Eve planned ( a once in a lifetime event) and I really don't want to miss this. Do you think it's possible they will schedule for before Christmas?
Any help or advice would be most welcome!!

Thank you!  Grin

 on: September 10, 2013, 02:40:50 AM 
Started by elw1229 - Last post by Ozaruz22
I felt something.

 on: September 10, 2013, 02:34:56 AM 
Started by slsawyer - Last post by Ozaruz22
I felt something.

 on: September 08, 2013, 07:25:28 PM 
Started by LauraChesh - Last post by LauraChesh

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