Cholesteatoma Information and Stories, Ear Infection Surgery Information, and Otitis Media Surgery Information

We've collected stories from people over the years who have suffered from a cholesteatoma, cyst in the inner ear, and other ear problems such as sensorineural hearing loss, otosclerosis, and reconstuction of the bones of the inner ear. Cholesteatoma can be a rough condition, with a long recovery period, and we hope that the stories we've collected will offer some encouragement while you are recovering. Take your time, and feel free to bookmark this page as we do add more stories as the come int. To view the stories, please click the drop down, then click on an individual story:

The webmaster, having experienced a cholesteatoma himself and undergone two surgeries to remove it, created this resource for others. Please leave a comment or criticism below if have you have moment. Thank you and good luck in your recovery!

Also, check out the: Cholesteatoma Message Boards. It's a good resource to get feedback from others dealing with cholesteatoma.

And as always, this is site is just for reference, it's not medical advice.

Talk to your doctor, primary or otherwise, to get medical advice.




Laura Fairbrother Walpole
hi there.i found out I had c-toma in march this year and I'm booked in for surgery on mon 26th sept(this wil be my 2nd attempt as I'm so scared and clueless).i don't know what to expect and that's why I'm strugglin...help.laura.x.
Sep 19, 2011

Jan Fairbrother Boreham
I actually feel happier for you after reading those stories.Medical science is amazing....you'll be fine! You've had two babies...you can cope with anything! xxxxxxxxxxxxxx
Sep 20, 2011

Thomas Spann
My daughter just went in for her second ear surgery to reconstruct the delicate bones that were partially destroyed by a cholesteatoma. The fist surgery 6 months ago was to remove the growth and move the remaining bones out of the way until a second reconstructive surgery could be scheduled. It was hard on my 10 year old little girl and she was not looking forward to another operation. We as parents and Christians, have been praying along with others for her.

This week when the specialist went in to look around with an endoscope to view the scope of the remaining growth and to reconstruct...
Sep 22, 2011

Monique Hordijk Thanks for sharing this information and your personal experience. I am in the Netherlands and my husband is due to undergo surgery for cholesteatoma. Knowing now what causes his complaints (very bad hearing, headaches, nausea, extreme vertigo) makes it more plausible but still uncomfortable. We'll see whats up next... Kind regards, Monique Hordijk Like · Reply · Sep 27, 2011 1:19am
Melissa Hill Morrison · Mount Miguel High my son, one of my youngest twins, was just diognost with this when he got ear tubes put in and the saw it after makeing the cut for the tubes, he is set for sergery on the 25 of october 2011. hes only 5 and has been thru so much already. I'm so worried. Like · Reply · Sep 27, 2011 10:01am
Jam Russell · Dry liner at Everywhere & Anywhere I have had c-toma reaccurance for the last 10 years , I have had 9 operations all lasting betweeb 6-9 hours , I waited 18 months from my scan to my first op , I was back and fourth from my gp for 11 months being told I had a ear infection , I have had my malleus removed leaving me deaf , I can no longer have scans due to over exposure to radiation , my doctor isn't very good , I need a good doctor and hospital or even some cash to go private , this has completly ruined my life due to imcompetant doctors and surgeons , any body go to QA portsmouth? don't! run away.... u wont get the treatment needed! Like · Reply · 1 · Oct 25, 2011 6:37am
Mo Colman · Thwing I have had the opp myself 2 years ago but left me with tinitus an vertigo, small price to pay considering the outcome if it is left to grow, my sympatheys to all those who have to under go the opp but get it done don't leave it to grow. Like · Reply · 6 · Nov 22, 2011 11:35am Conlin Roser · Works at Self My 7 yr. old son had a c-toma removed and will go back next year for surgery to install a prosthetic to restore his hearing. His doctor has been very kind and honest with us about his chances; he may get some, all, or none of his hearing back. If anyone has experience in this area am curious as to your thoughts. Like · Reply · Nov 24, 2011 10:17pm SianElizabeth Fowler I had surgery 20 years ago and then again 2 years later. First I ahd an upper radical mastoidectamy , later a full mastoidectamy. My hearing is rubbish in that ear, but It hasn't really held me back. I make people walk next to me on " my good side!" I have to have a T- tube in my ear drum which is replaced every two years and have been seeing my ENT consultant ever since. If I don't have the tubes in the fluid builds back up (so I have to have this done to maintain a healthy middle ear or the vertigo and pain begins again). I wouldn't worry about the surgery. AT the end of the day there is really no choice-and the specialists know exactly what they are doing :-) Like · Reply · 2 · Nov 29, 2011 1:10pm Barry Patrick I myself have had 4 ops on my left ear, and one on my right, all but one in the left ear to remove Cholesteatoma. Not pleasant, but it had to be done. I did the wrong thing, and let things run and run and run and run. What happened was that the Cholesteatoma eventually entangled and attacked my facial nerve on the left side of my face, developing Facial Nerve Palsy. It has similar symptoms to Bells Palsy, but unlike Bells Palsy, which is usually caused by a virus, and temporary, Facial Nerve Palsy is caused by a bacterial infection, and damage can be long lasting, even permanent. I eventu...See More Like · Reply · 4 · Nov 29, 2011 2:48pm James Auger · Southern Connecticut State University I had this surgery once when I was three years old and a few more surgerys when I was 6..i lost 30 decibles of hearing in my left ear andi have biyearly check ups and was always told to advise staying away from water my whole life besides showering with a ear plug and head band due to my enlarged earhole..im happy to hear I'm not the only one going through this..through my life I always thought I was the only one..my heart goes out to anyone who has to go through this or knows someone that does. Like · Reply · 5 · Dec 1, 2011 2:49pm Kim K Wostell Carr My daughter at the age of 8 had to have her first C-Toma surgery. The Dr. at that time was shocked that with the intense damage and the reconstruction that was done that She did not have some sort of Paralysis. God does still perform miracles! She was also told she Would have little or no Hearring in the ear which she had only lost 10% of for a while. However over the next 12 years she would be fine with regular visits to her ENT. She started expiencing the symptoms again but no earache just vertigo and a headache which we thought and was told wa sinus issues and probems with another recent ja...See More Like · Reply · 2 · Dec 1, 2011 10:01pm Jenna Roberts · Dental Assistant at Dynamic Dental Orthodontics and Implants I'm 17 and have endured four surgeries for a cholesteatoma. The first surgery at age 5, when they finally determined it was a cholesteatoma; the second at age 5, to remove the tumor; third at age 6, to rebuild my ear drum; and the last at age 10 to attempt reconstruction again. I am 90% deaf on the right side, but that is a small price compared to the size and strength of the tumor. Like · Reply · 1 · Dec 11, 2011 9:35am Kerry Anonsen · School of Hard Knocks, The University of Life On Friday, I will be having my 3rd surgery. I've already had 2 5 years apart in the right ear. now, I have one in my left ear. I am hoping that it goes well. Like · Reply · Dec 13, 2011 8:45am June Simmons · Works at Retired I am scheduled for my third surgery in Jan. 2012. Infection began after suffering a ruptured ear drum due to water in the inner ear from a swimming pool..did not know there was a hole in my eardrum before I swam. The first surgery was in 2003.. the cholesteatoma burst and nine months later grew again....had yearly check ups and found the infection and tumor back again...for some reason the new eardrums did not attach both times. Have had 3 different doctors who are considered specialists..hoping for a successful surgery this time. I have tinnitus and only 15% hearing after first two surgeries. I have never had pain or a discharge which makes me question if it is really affected again? Like · Reply · 1 · Dec 15, 2011 3:28pm June Simmons · Works at Retired June Z Simmons. Like · Reply · Dec 15, 2011 3:30pm June Simmons · Works at Retired I would appreciate any comments or advice on my posting..... Like · Reply · Dec 15, 2011 3:34pm Michelle Easby · Care Home Services Manager at Boots UK Hi. My daughter who is 6 has just been diagnosed with this after 2 years of infections. Never heard of this disease and don't really know what to expect. HELP..... Like · Reply · Dec 23, 2011 1:09pm Andrea Mansell Tindle I just found out I have C-toma, have had ear problems my whole life and never had heard of this happening. Going in for surgery the 17th on my left ear. Just lost 50% of my hearing in my left ear after a recent ear infection, it was fine before. But CT scan shows damage to my ear bones already. Rreading all of the stories really scares me. Has anyone ever had it successfully removed and hearing restored? Like · Reply · 1 · Jan 3, 2012 12:10pm Seth Kristoff First and foremost, I want to appreciate the administrator of this for sharing his story about the Cholesteatoma experience. It helps us a lot who are suffering the same case on how to deal with it. Like Andrea Mansell, I really wanted also to read successfull stories about this case because I was also diagnosed with cholesteatoma on my left ear last January 12, 2012. I was advised to undergo on surgery immediately but refused to have it here in Oman due to my personal reason rather I decided to go back home in my home country to have a second opinion and if the surgical operation is th...See More Like · Reply · Jan 15, 2012 4:58am Larissa Mialkovsky · Brisbane, Queensland, Australia Hi I am due to have my first Cholesteatoma operation on January 31st..so in 2 weeks! I was just wondering if anyone could help rest my nerves and tell me what to expect post op? Is it very painful & what side affects will I most likely experience? Like · Reply · Jan 16, 2012 9:24pm Karen Barrand · Ottawa, Ontario I'm waiting for my ct scan. I've always had ear infections but this one wouldn't quit and my ear was bleeding. I've discovered I have diabetes too which is probably why my ear got so bad so quick... I hope I don't have to wait too long Like · Reply · Feb 1, 2012 7:44pm Joshua DuBose · Corvallis High School (Montana) I was diagnosed with a Cholesteatoma a few years back and had it removed by one of the best Outilaryngologists (however u spell it...lol) in the field. His name is Dr. Peter G. Von Doersten, located in Missoula, Montana. I was doing follow up appointments with him making sure things were going alright, but unfortunately I don't have insurance anymore. I moved to utah and have been hoping to get employment insurance, but it won't kick in for another half a year. I'm starting to get massive ear aches now that extend from my ear clear to my jaw. It hurts like heck but I'm not sure what to do at the present moment. Since I already had a mastoidectomy and the cyst removed, I'm hoping to be able to do the rest through natural remedies. Tumors suck! lol Like · Reply · Feb 2, 2012 10:44am David Ward I have been through a mess with Cholesteatoma myself. 5 years of surgeries after being told it was nothing all my childhood as well. I lost two of my three bones, most of my hearing (miracle I have any at all I know), and the taste in the right half of my mouth... Now I have a two year old son. This morning there was wax out the right side of his ear, and not his left. Probably nothing, but it makes me seriously worry. Mine is the rarer birth defect that is inherited. My uncle, and several others in my family have had the defect which causes it. Now I need to know... how early can you be ch...See More Like · Reply · Feb 12, 2012 7:38am Angie Larkey King · Physician assistant at Saint Francis Hospital My Dad(age 60) has a large c-toma dx on CT and hammer, anvil are gone and also deterioration of bone is significant. He will see another doctor at UAB named Dr. Pappas Jr that was recommended by our ENT to perform his mastoidectomy. Anyone know him or any advice before his surgical consultation? Like · Reply · Feb 18, 2012 12:57am Tonia Lee · Melbourne, Victoria, Australia have just had my ct scan for my second c-toma. right ear. have been researching the condition. my first was in 2006 resulting in a radical mastoidectomy, some rebuild of the hearing bones, I experienced short term loss of sensation to right side of my face, I have odd nerve sensations between right side of my tongue abd right ear still 6 yrs later, significant hearing loss (thankfully not completly), I am waiting to have my second op, am depressed about this and scared my balance will be compromised from the second op. I'm a horseperson, I only just purchased a new riding horse, no balance, no horse riding. I'm also scared of more hearing loss and facial nerve damage. Like · Reply · Feb 27, 2012 7:17am Dorshan Stevens Millhouse My husband is currently in the process of being diagnosed with this. We have a CT this Friday. My concern is finding a doctor experienced with completing many of these surgeries. Anyone have recommendations for doctors in North Carolina... Raleigh/Fayetteville areas? I want to ensure the best care and highest success rate. Like · Reply · 1 · Feb 28, 2012 8:09am Victoria Barr · California State University, Northridge I am 21 years old and have been battling the c-toma in my left ear since I was 7. I have had eight different surgeries to remove these reoccurring pests. Long story short I went through all the hassles of facial paralyzation to getting meningitis twice. The first viral the second bacterial. Just three years ago I had to get a complete eradication of my left ear. A few days ago I was prescribed medicine for a middle ear infection and my hearing has been affected. I'm praying that this hasn't moved into my other ear. Any suggestions or thoughts on my situation? Like · Reply · Mar 1, 2012 8:41am Franchesca Callejo · Attorney-At-Law at Self-Employed My son was recently diagnosed with this and surgery has been proposed in about two months. He had tubes in his ears from infancy through middle school and has a retracted ear drum (only his right ear is affected) with partial hearing loss and used a hearing aid for a number of years (he's in his mid twenties). Has anyone explored homeopathic treatment to reduce the scar tissue/tumor growth? Like · Reply · 1 · Mar 18, 2012 12:47pm Filip Maliarik Hello, today I ve come back from surgery operation of cholesteatoma. It all begin in november, when I stopped to hear, I went to my ORl doc and she said that I have otitis media (golden staphylococus and enterobacter) so I ve started to take antibiotics (cyprofloxacin and amoxycilin) after 2 weeks the infection was gone. What was gone too was my ability to hear. So she sent me to specialist in hospital whom diagnosed me cholestatoma. He put me on waiting list. I took 3 months to get my surgery done, meanwhile I ve occasional outflow from my ear. It was smelly yellof/light brown fluid. On surge...See More Like · Reply · Mar 21, 2012 4:34am Grant Closson Currentlu waiting for surgery in my left ear to remove C toma. Did not have any symptoms prior to losing a considerable amount of blood from my ear one day. Ct scan revealed the c toma had eroded away my bones of hearing almost completely. I was glad to happen upon this site and read of others experiencing this misfortune. Sorry about our luck people.Grant Like · Reply · Apr 2, 2012 8:55am Barry Patrick Well, since I last wrote, my left ear started discharging again, and last weekend, my ear started becoming painful, and ended up with a mastoid type infection. I have been in considerable pain, but I am to go back to the E.N.T. outpatients unit at the Royal Victoria Hospital in Belfast tomorrow morning. Deep down, I am expecting the diagnosis to be Cholesteatoma. It is frustrating, deeply frustrating, as I honestly had believed I had seen the last of it, and until I got itching at the back of my left ear at the end of February/beginning of March, had no symptoms since October 2008. At the moment, I don't know if I will be admitted to the RVH tomorrow, and put on IV antibiotics, as has been the case in the past, or if I will be sent home and given oral antibiotics and told to come back. Either way, they will have to get worst of this infection at the back of the ear cleared before they will even begin to consider surgery. I’ll let you know what they say. Like · Reply · Apr 4, 2012 1:09pm Christine Newland My first experience with c-toma was over 15 yrs ago leading into my freshmen yr of high school. I had the common symptoms of chronic ear infections, tubes, bad smelling discharge, dizziness, and hearing loss. I had a HORRIBLE experience with Dr.Wong in Lancaster CA. He performed a horrific surgery leaving my ear canal exposed. After my parents found the House Ear Clinic I was then treated by Dr Luxford. AMAZING results! Dr Luxford determined I needed my first surgery redone in my right ear. It was also his determination that the surgery performed by the first Dr did not rid me of the c-toma a...See More Like · Reply · 5 · Apr 18, 2012 9:27pm Amy Jones does anyone know a great specialist in nc? I had a c-toma iin my L ear which left me deaf in that ear and now I have one in R ear. I am scared to lose my hearing in my "good" ear. Like · Reply · Apr 26, 2012 4:43pm Misty Partridge · Works at Car Freshener My 10 year old son had a congenital c -toma he has had 15 surgeries and lost hearing in right ear I feel so helpless the c -toma crushed the bones in his ear adheared to his skull and facial nerve I cannot find anyone who has dealt with this for so long I don't know what to do Like · Reply · Apr 27, 2012 10:43am Melanie Worthington Hi All, Just wanted to share my story having had surgery over 8 years ago now and *touch wood* been lucky enough to not have had any since. Up until that point I had never heard of the word. I was 32 when I had surgery which lasted 5 hours and led to removal of all the bones and ear drum. I have a cavity there now and an extremely wide ear canal but it was necessary because the Cholesteatoma was extremely large and very aggressive. It had destroyed everything. I think I was lucky really. Apart from a rather wide ear hole, dizziness when cold air gets in, tinnitus which I have had forever anyw...See More Like · Reply · 1 · May 5, 2012 10:25am Darren Whelan · St columbas comprehensive glenties Just found out a month ago I have a c-toma not really sure how to take it.I met with my surgeon today and have been told it will be an aggressive surgery lasting up to 7 hours as it is very deep rooted. any advise would be much appreciated as I am freaking out what's all this about bi-annual visits? I work as a hairdresser running my own salon and fear if I lose my balance may not be able to work again. Like · Reply · Jun 12, 2012 5:02pm Asyong Llamas · Branding & Communications at Atcharap I'm from the Philippines and was recently diagnosed of cholesteatoma. Scheduled for CT scan this Monday in preparation for a "little complicated" surgery accdg to my EENT from Makati Medical Center. I am currently employed in a call center so I have to temporarily wear a hearing aid to assist me with my job. I worry so much about the operation. I pray I'll get my hearing back to normal as soon as possible. I have so much difficulty hearing. Now, I've realized when my doctor diagnosed me of cholesteatoma, I have diagnosed myself with FATIH! Your prayers are highly appreciated. Like · Reply · Jul 3, 2012 1:48am Phoebe Christian · Mint Hill, North Carolina I have had hearing loss in my right ear my entire life. Last summer, my right ear was always hurting, draining blood and had a bad odor. After I was referred to a specialist and had my CT scan, I was also diagnosed with a c- toma. I was told that he will widen my ear canal that is very narrow, clean my ear well, and then remove tissue above my ear and reconstruct. I haven't been back since. I am so scared! Now my ear is hurting again, and I can't dare go through another cleaning and so I am coming to you! My Dr. is Dr. Silver of Charlotte NC and I just need encouragement! Like · Reply · 2 · Jul 23, 2012 5:48am Jennifer Philippiadis · Nursing Attendant at Essendon Maternity Hospital Did you have operation. .bless you. Reply · Aug 29, 2015 3:37am Seth Kristoff Hi everyone, Last January, I was diagnosed with cholesteatoma in my left ear. Like everyone , I also wanted to read some success stories about mastoidectory operations as I mentioned a couple of months ago here in this site. For the benefit of everybody and for future references for those individual who are still in denial about the symptoms or still not decided yet to undergo on operation because of fear or whatever, I want to share with you, the successful mastoidectomy operations on me. Last March 15, 2012, I had mastoidectomy operation thru the leadership of Dr. Josefino Hernandez - C...See More Like · Reply · 3 · Jul 24, 2012 6:19am Brandon Hammerstrom · Graduate Assistant Athletic Trainer at University of Iowa I was diagnosed with a cholesteatoma in my right ear when I was in 5th grade (2005). I had always had persistent ear infections and had multiple tubes in my ear the years prior. My regular ENT spotted something behind the ear drum when I was in 4th grade and referred me to a specialist in Boston. His name is Dr. Dennis S Poe. He was very friendly with me as I was young and scared. He explained to me what was going on and that I would need surgery to remove the cyst and then I would need a reconstructive surgery 1-2 years after because the cyst had eroded the three bones. I went through about a...See More Like · Reply · Sep 9, 2012 4:22pm Veronica Anderson · Las Vegas, Nevada Thank you Jeff that has created this site. I have an 15 yr old daughter that has FINALLY gotten diagnosed with this. She's been seen by ENT for almost 10 yrs now and not one has been able to tell me she has this disease. She's had to surgerys for tubes and one surgery for the holes in her eardrum that the tubes had left her ugh!!!. Now here we are in Claifornia at Loma Linda seeing our ,hopefully last specialist for this un awaking surgery. She is due to have surgery in Dec ,but the doc did mentioned she has a very ,very bad case and will prob need to have an canal wall down. I feel so badly for her and I feel guilty I had not found a good doc until now. But reading u alls stories has made me feel some what confy. Once again thanks to u all. God Bless, Like · Reply · 2 · Sep 16, 2012 9:53pm Janelle Vigil Camacho · Division Secretary at RTD-Regional Transportation District I've had 4 surgeries for C-toma in my left ear, the first time was when I was 12 years old and my most recent was at age 36. I realized one day when I was in 6th grade that I couldn't hear out of my left ear so I told my mother who said she'd take me to the doctor because it was probably a build up of wax deep down. At the appointment, the doctor informed us that there seemed to be no activity in the middle ear and that he wanted to do exploratory surgery. Once the surgery was performed, a large c-toma was found, which had built up so much it did destroy the middle ear completely. I remember ...See More Like · Reply · Sep 24, 2012 7:38pm Kimberlee Dawn Bozsum Fister I just had the surgery two weeks ago.i can t seem to find out if the back of my ear should be draining alot where they cut it open.now I have a rash going down the side of my neck.called dr. but no one has called back of corse. Like · Reply · 1 · Nov 5, 2012 9:17am Laura Antonia It happend by me 8 times. Last time in 2002. This was de 10 ear surgery on one ear. My proffesor before this surgery always told my parents that it was to meany surgerys. But there was no choiche every time. In 2002 de surgery went so wrong that i now have brain damage. I cant walk any more because i just fell down. When i do to much it look i have eplisepue but littlr bit diferent. My proffersor went al over the world to tell my story to other dokters and also how to treat people like me. My englisch is not zo good so difficult to tell every thing en to tell exchactly wat happend in 15 years...See More Like · Reply · Dec 7, 2012 3:05pm Laura Antonia Ps see more on www.groofies.com were i tell about my life. Like · Reply · Dec 7, 2012 3:06pm Kimberlee Dawn Bozsum Fister Soon it will be time for the 2 nd. Part of the surgery.march 5 th. I go to set up the second part.not looking forward to the pain part again.i hope that some of the pain that I still have daliy goes away after the 2 nd. One. I would also love to be able to talk on a phone without haveing it on speaker.i m not sure how people who can t hear get by.its so scary.i go to bed every night thinking someone could come in and kill my whole family and I would not hear a thing Like · Reply · Feb 3, 2013 7:07am Marie Blalock · Pickerington, Ohio I would like to talk to Roland or anyone who has had a ct scan that didn' Like · Reply · Nov 14, 2013 8:56pm Marie Blalock · Pickerington, Ohio Sorry for typo error. I would like to talk to Roland or anyone who has had a ct scan that didn't show cholesteatomas. I had a ct scan that showed nothing but am still suspicious that something is in my ear. It just feels that way. How likely is it that I could have something or a c-toma in my ear and it not show at all. I have all the symptoms except a foul smelling drainage from ear. I have been reading posts and know that if I have this the sooner its out the better. Can your hearing be saved if its found in time? What can I do to positively rule this out or find it if its there. Someone help me and tell me about ct scans and what I should do next. Ent has looked in my ear and it looks normal. Apparently that doesn't rule it out either. Like · Reply · Nov 15, 2013 2:00am Claire Roco · Shift Manager at McDonald's I had this surgery twice when I was little. The doctor said more than likely it'll come back. Well behold my ear is getting the symptoms and is telling me I have a skin infection in my ear . She can't see enough to tell if it's anymore more . I told her I havnt felt anything like this sincet last surgery which I was 5 years old and now I'm 21 . It worries me Like · Reply · Jul 5, 2014 11:53am kathrynmarshall After my 5-year-old son had a cholesteatoma removed two months ago, there were several issues that I would like to share. 1) Follow-ups are critical in the first few years post-surgery, and maybe for life. The surgeon mentioned that it takes just a few viable cells left over to cause reoccurrence post-surgery. Also, if not congenital, then if the conditions that caused the growth persist, then I would think lifetime check-ups would be important. My son’s might be congenital, but I will be paranoid about this forever. The surgeon plans on doing an MRI down the road to look for regrowth. H...See More Like · Reply · 2 · Jul 9, 2014 7:44am Scott Ploetz · Appleton, Wisconsin In the last eight years I have gone through two surgeries. The first time they removed a large aggressive growth and they reconstructed by ear bones. Things were great for exactly 2 years, went in due to my ear suddenly draining blood and by titanium ear bones floating out of my head. They did a MRI and found the C-toma came back again and was larger than ever. They did a different type of surgery widening the ear canal and this time they left the reconstruction out to make sure it would not come back. They did not want to do the reconstruction unless I can remain 2 years without an infec...See More Like · Reply · Nov 2, 2014 4:53pm Bernie Carroll · Mount Carmel College, Sandy Bay I have just found out that I have cholesteatoma in my left ear yet again...I have had it 4 times in my right ear and now this is the third time for the left. As an infant I had constant ear infections and pain and was diagnosed when I hit my teens, by this time it had destroyed those three little bones. There was a need to have numerous other operations on both ears as a result of this rotten disease. I am deaf on the right side and only have some hearing on the left so I am most upset at the prospect of further loss in this ear. I have had a lifetime of ear infections and pain and class cholesteatoma as a CURSE. Like · Reply · Nov 11, 2014 1:51pm Patricia Trevino I had surgery in 2001 to remove Cholesteatoma. I'm getting the symptoms back again and have to have testing done. I have the right sided facial numbess real bad and have read you can have facial paralysis. Just curious if anyone has facial paralysis and did it get better? Like · Reply · Mar 4, 2015 11:04pm Tess Horn My oldest son was diagnosed at age 3 with c-tomas. He underwent 6 surgeries by age 10. He is now 26 & is having symptoms again after 16 years clean & clear. People often think he is silly or just a complaining because they think is as simple as needing ear tubes or something. They don't seem to be able to understand it can be serious. As a result he lost 50% hearing in his ear but still has his chochlea & bone conductivity. I hate to see him going through all this again as an adult. His original Dr. Ellen Friedman at Texas Childrens Hospial -Houston is now 65 & he now lives in Colorado. Anyone have any idea how to find a GOOD surgeon? Like · Reply · Aug 30, 2015 8:36pm Marc Breau · W.a.losier I am getting a surgery friday the 29th of july 2016 to remove a cholesteatoma and fix my ear drum, it my 3rd surgery in the same ear my question is it is normal that think alway come back every 10 years or so. and I know the last surgery was more painful then the first one it is because the skin it more ridgid after multiple surgery. thank-you for your reponse at my two question I have.... Like · Reply · Jul 25, 2016 8:42am Michele Pearlstein Ruddy · Rider University I just recently was diagnosed with C-toma and scheduled for surgery in 2 weeks. It seems that everyone on this message feed has had symptoms, such as ear infections and dizziness. I have none of these except for hearing loss that lasted 1 week and was relieved after an ENT doctor removed wax and pus from my ear. It was at this time that he noticed the infection and sent me to have a cat scan done. Maybe I am fortunate that the C-toma was caught early before it got big enough to cause serious problems. I almost opted out of surgery because I felt no pain at all. But, after reading these posts, I realize that if I don't get surgery then problems will occur. Has anyone else been diagnosed with C-toma without symptoms? Like · Reply · Aug 10, 2016 7:14pm

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