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 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.

 on: March 28, 2014, 02:48:59 PM 
Started by Marie - Last post by Bilateral
I have had two cholesteatoma's, the first at 17 and my second at 53. When I was 17 they didn't have the technology they do now. In August of 2013 they found another c-toma in my good ear. I also was in fear of being deaf. Before they took the tumor out I had a bone conducting implant put in to my skull. It was a fairly easy procedure and without it I would be deaf. I am so grateful to my surgeon and his support staff of audiologists. So there is hope, even if you lose the middle or inner ear.

 on: February 10, 2014, 04:16:28 AM 
Started by Royt777 - Last post by Royt777
2014 Feb. It's now been while since the operation. All going well. I do get wax build up but otherwise everything is good.

The root cause for my problem is Eustachian Tube Dysfunction. Unfortunately this is still there. I read recently that there are some experiments to use a blow up balloon to expand this, so perhaps in a couple of years I will be able to have that done. Them I am hopeful my hearing will be crystal clear.
But I remain very grateful for the operation and the success my surgeon achieved so far. 

 on: February 08, 2014, 07:23:16 PM 
Started by ammon44 - Last post by ammon44
Unfortunately the 2 surgeries that are commonly done for chol. removal are not that great.  Canal wall up: has a high failure rate.  Canal wall down: high rate of succesful removal but the patient has to return every 6 months to get it cleaned out, they are left with an earhole that can be triple the normal size and many of them can never swim again.

Our son had 3 canal wall ups about 6 months apart but it kept coming back. 
The ENT said his was diagnosed late, about age 5. We finally went to Dr. Gantz at the university of Iowa.  He did a new surgery where the basically do a canal wall down but modify it with a graft so that it heals normally, no bigger earhole or needing to get it cleaned by the ent forever. His hearing was also restored to about 75 perc in that ear. 

My advice would be to call Dr. Gantz office and consider going to him- insurance will pay if you get a referral from your primary care doctor.  If you cant travel that far ask them if one of his ENT's that he trained to do it is closer to you. 

Believe me it is worth going to him!  2 years after his last surgery our son has no recurrence, his hearing is about 65 perc in the bad ear, 100 perc in the other and he swims and does not need it cleaned out. 

 on: January 06, 2014, 01:36:45 AM 
Started by Marie - Last post by Marie
Is there anyone out there that can give me good or bad information on a couple of doctors located in Ohio. One is Dr. John Ryzenman of the Ohio Ear Institute. It sounds like it would be a rather large place but is only one doctor.  The next is the Lippy Group. The doctors there are Dr. Lippy and Dr. Berenholtz. If there are any doctors in Ohio who are experts in cholesteatoma and or repairing the middle ear bones or replacing please let me know who they are. Can middle ear bones be repaired?

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