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 on: November 12, 2014, 10:23:19 AM 
Started by Bubby6 - Last post by Bubby6
I was just diagnosed with a cholesteatoma in my right ear.  Does anyone have the name/s of a good surgeon in Jacksonville, Florida?  Thanks.

 on: October 15, 2014, 01:50:18 AM 
Started by meleto - Last post by meleto
hi just had surgery last week,four hours my second cholesteatoma,this time had to put a cativty in my ear canal, i guess it was a canal wall down.have to get cleaned out two to four times a year for rest of my life i am 55 years old.ears problems all my life to had lot work done,my question is will i ever be able to swim again?

 on: September 08, 2014, 10:43:01 PM 
Started by ammon44 - Last post by HuffDaddy
After reading this thread we called Dr Gantz about a year ago and we are glad we did. Our 11 year old son had already had the CWU procedure here in Kansas City and the desease grew back. We were looking at having a traditional CWD procedure by the same surgeon who we really liked but my son is a swimmer/triathlete etc, etc. This procedure just did not sound right. Surely there has to be a better way? Anyway we found this post and made a call, drove up to Iowa and had surgery scheduled within maybe 48 hours of reading this post. Everything went well with the big surgery and just 5 days ago we completed the follow up surgery (aprox 7 months later). They found one tiny little dead "pearl" which is what they like to see I guess and put in his titanium middle ear bones. So far so good. He is doing great and we are feeling really good about it. I guess our boy was loaded up with the stuff about as much as they have ever seen. Pretty much every open space possible was packed with the desease. Anyway, we love the Univeristy of Iowa Hospital and we are pretty darn happy we found them. I guess we will always worry about it growing back again some day but I do like the idea that this procedure reduces the likelyhood by removing the negative pressure that was continuing to form pockets and/or retractions in his ear drum. Hopefully my son's eustacian tubes will begin to function better as he grows. So far so good for us! Good luck to anyone reading this as well! I would be glad to answer any questoions about our experience so far.

Scott Huffman 816-210-3658

 on: June 27, 2014, 01:44:09 PM 
Started by CDol - Last post by CDol
I have had ear infections for many years in my left ear with ear tubes twice. I went last week to have clogged ear tube cleaned. The ENT Dr pulled out two long strips of skin and urged me to call an ear specialist ASAP as it is a cholesteatoma. I had a ct scan yesterday which showed no abnormalities. Can a CT scan be negative and still be a c-toma? Thanks!

 on: May 17, 2014, 03:03:48 PM 
Started by salgal - Last post by salgal
Hi! I live near Seattle, WA and have had ear problems my whole life.I have Eustachian tube dysfunction and a deviated septum. I had tubes as a kid and many ear infections as a child and even as an adult....repeated eardrum ruptures. I've always had reduced hearing, but now at 40, I have moderate hearing loss, stuffy/plugged ears, occasional discharge and headaches.

In 2005, I had a parotidectomy a tumor in my spit gland. ENT found it when I was having problems with my ears/sinuses. 3 months of antibiotics and steroids. Saw and allergist. It seemed to mostly resolve itself.

Then 4 years ago, when I went back in for ear/sinus infection again, the same ENT told me I might possibly have a c-toma, but the ct scan came back not showing anything. He was pushing sinus surgery at the time so I just stopped seeing him.

Then during my entire pregnancy in 2012, I couldn't hear a thing. Stuffy/plugged ears and no one could tell me what was going on. Maybe blood volume due to pregnancy. Even after giving birth, I still have the problem. It gets a bit better occasionally, but never completely clears up. I switched ENTs and this one said moderate hearing loss due to my middle ear. Inner ear seems okay. I have a build up of skin on the outside of my ear drum and when she tried to remove it, I had vertigo. Twice, two weeks apart after ear drops to soften it. She stopped suctioning and suspects a c-toma connected to the middle ear bones. Now I'm off for another ct scan. And most likely a referral to a Otologist/surgeon in Seattle at Swedish Medical Center.

I am glad to see this message board. I used one during my parotidectomy too and the feeling of not being alone in this is priceless. Even tho, I don't know any of you.... thank you for being here. This whole thing is very scary.

 on: April 12, 2014, 11:51:08 AM 
Started by mhlyons - Last post by Bilateral
Hello Mary,
My story is similar, 36 years later a tumor grew in my other ear. Is your tumor in your right ear still or did it go to your left? And yes things have changed in 30 plus years. I had a bone anchored implant done before the removal of the second tumor. Thank goodness for technology or I would not hear. Both my surgeries were of the invasive type because there is less chance of it coming back and if it does it can be taken care of in the doctors office. Wish you the best of luck, I know how hard it is to face again after so long.

 on: April 09, 2014, 02:51:17 PM 
Started by mhlyons - Last post by mhlyons
Hi, my name is Mary, 50 years old single parent with a 15 year old still at home.  When I was 17 that is when I had the first one in my right ear. Surgery was done to remove the tumor. They said it was so big it was touching the brain.  A new eardrum was formed out of the cartlidge of my outer right ear.  They were saying I was like one of the first this was done with.  I had to go back in a 2nd time 2 years later because apparently some of the growth was left behind from the first surgery.
I have been falling down a lot and when you are 50 and overweight it really hurts bad.  It seemed I was falling every 2 weeks.  My primary sent me to an ENT and I told him to be careful the ear stunk like something died.  And 3 weeks before that I had woke up to my ear bleeding.  And guess what he found. :'( .  After 30 years I have another one. Next week is CT Scan to see how big it is and see if it is touching the brain so he can decide whether to do invasive or non-invasive surgery.
I am scared.  Oh the part I didn't tell yall was I coded on the first surgery.  Words stay with you a long time.  Another thing that has me bothered is each time your brain is exposed to air, it can kill brain cells.  Hey this 2014 maybe they have come along way since the earlier days.

 on: April 03, 2014, 07:31:23 PM 
Started by Royt777 - Last post by Bilateral
Have you checked into the possibility of a bone anchored implant. It is much less invasive than reconstruction. Plus I don't think one has ever failed. You can research on-line at Oticon Medical. I have had one for 7 months and would be deaf without it, I am amazed how well it works.

 on: April 03, 2014, 02:17:57 AM 
Started by Royt777 - Last post by Jess
I had my surgery about 6 months ago. I was also taken by surprise by the size of my "$$ gap" despite being a private patient. I ended up out of pocket approximately 7k. The other thing that I wasn't fully prepared for was the aesthetic change to my head. My left ear is no longer visable in front on profile and I now have a large hole where my ear canal was (I had a modified radical mastoidectomy) and I can feel where large pieces of bone were removed from the back of my ear. This is not a complaint, just an observation. My hearing also hasn't improved and I'll see the ENT at the nine month mark to gauge my suitability for hearing reconstruction. In my previous appointments I hadn't been able to "pop" my ears, which indicated a lack of airflow behind my ear drum meaning reconstruction wasn't an option. I'm pretty hopeful though, since then I have noticed they are starting to pop again.   

 on: March 30, 2014, 02:27:51 PM 
Started by Bilateral - Last post by Bilateral
Hello all,
I am 53 and just had the removal of a c-toma in my right ear. My left ear was affected at 17 and I was single sided deaf for 36 years. I now have a bone anchored implant that allows me to hear better than I have since I was a teen. I am heartbroken over all the sad stories and how many posts are read but not responded to. So I have decided to check daily for any new members or posts. This is a horrible and terrifying disease but it can be overcome. There is hope.

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