Cholesteatoma: Anyone else want to talk?

Does anyone have any experience with a young child with cholesteatoma? My 3 year old was just diagnosed with one in her left ear and possibly one in her right. I have found a great deal of information on adults having these, but not so much on young children. She doesn't have any other health issues. It was quite a shock for us.

@bttacampbell You may want to reach out to the Hands & Voices organization. They are a parent support organization for children with hearing loss.
http://www.handsandvoices.org/
Tony in Michigan

@bttacampbell My son Yu Xia who we adopted from China when he was six and weighing 25 pounds had a cholesteatoma. He also had cleft lip and palate and is deaf in the that ear. He had it surgically removed in Boston by a top surgeon (Dr Volk)sp who has probably since retired as Yu Xia is 30 now. It was quite large and extensive as it was wrapped around major blood vessels. It was a lengthy surgery. I am happy to say he had a good recovery and has had no recurrence of the cholesteatoma. irene5

https://www.medicalnewstoday.com/articles/cholesteatoma#summary It appears that there is a lot of information on the internet. This article struck me as being quite positive. I hope it helps.

My husband was born deaf with a hard cleft palate and cleft lip with no left nostril. After the multiple surgeries to repair his lip and nostril and cleft palate, they reconstructed his hearing in his left ear.
He was hard of hearing through his early years until a cholesteotoma took his hearing in his left ear and they reconstructed his right ear, primarily his ear drum and one bone that was missing.

Through his teenage years and in into his adult life, he continued to battle cholesteotomas in his left ear with repeated removals and treatments following the Procedure, with steroid ear drops and Cipro ear drops and then Ciprodex when it became available. (CAUTION: do not use this product!)

When he was in his late thirties, his body began to literally fall apart. (He was an electrician by trade, carpenter on the side.) His final cholesteotoma removal was tricky. The tumor in his left ear was huge and extended through the ear canal and into the skull. After the surgery, on our way home from Denver, he began leading cerebrospinal fluid. We had to make an emergency trip back to Denver from out Wyoming home through a January Blizzard for him to have emergency brain surgery and seal the perforation into the brain from the ear canal. They removed all excess tissue in the canal and cauterized it. He has no future chance of reconstruction in that ear. No cholesteotoma again but no hearing except through a hearing aid.

Several years later, we were informed that the pronounced hearing loss that he was experiencing was being caused by the deterioration of the the natural bones in his right ear which were reconstructed from his body when he was a child and allowed him to hear.

His specialist wanted to perform another surgery in his ravaged and scarred right ear. Clean it out, much like what he has done with his left a couple of years earlier, replace the deteriorating human bones with titanium bones and rebuild his tympanic membrane.

He would have a 50/50 chance of hearing normally again but he would hear something hopefully but it was not a guarantee. Doing nothing would definitely cause permanent deafness to result by the end of the year, probably before Christmas.

Our family prepared for the next month by learning basic sign language as our own family sign short cuts which we still use today, and he had the surgery.

He has partial hearing in his right ear which continues to slowly deteriorate as he ages and is completely deaf in his left ear. He needs two hearing aids which the cat destroyed about 2 years ago and we haven’t been to replace due to limited, fixed income.

The years of taking ORAL and OTIC STEROIDS have ravaged his body. In addition, his total surgery count is 39. According to doctors, the trauma of repetitive injury and surgical repair to his body in 55 years has created severely arthritic joints, blown and dislocated joints, replaced and reconstructed joints, and nerve pain that ravages his entire body day and night and prevents him from working a job. Hence, he is and has been disabled for almost fifteen years.

In addition to this scenario, he is my caregiver due to the fact that I developed CRPS, Complex Regional Pain Syndrome, Type 2, otherwise known as Causalgia, the most painful disease known to mankind, seizures, migraines, severe arthritis, and IBD.

My husband, James is my soulmate, my love, and the strongest man I know.

He takes care of me and reminds me together we are strong and without Jesus, we can do nothing.

If we can answer any questions, please shoot them my way.

@faithwalker007 I don’t have a question for you - just a comment. God bless you and your husband real well. When I think of all the similar surgeries in Boston our son Yu Xia has had over the years, I am alerted that he may not be “done” so I am grateful to you for posting this, but at the same time so sorry your husband has dealt with so much. Your name says it all. It’s the only way to walk this life. Thank you again. irene5

Irene,
Please have hope that you and your son may not travel this path. James began it on the Pine Ridge Reservation where his mother could get him care. His first surgeries were done experimentally and at the behest of the Children’s Hospital in St. Paul, Minnesota.
His ear maintenance was not the best because of where he received care but then nobody’s care to this day is on any reservation in the Rocky Mountain Region and South Dakota.
I can offer you hope when my husband had little and by a miracle, met the One who gave him that very thing when he was 9 years old on Easter Sunday.
I also can offer you my biggest weapon from our home in the wilds of Wyoming— prayer. I will be praying for you and your son.

Thank you! You are kind. 😊

Yes. My niece has been diagnosed with this.

I have had cholesteatoma in the same ear twice. I had ear issues my entire life. Infections, burst eardrums, hearing loss. It wasn’t until I was 23 years old and I worked at a medical facility, that I first saw an ENT Dr. I had an ear infection for a month, saw 3 different primary care Dr’s, and all of them said I had a terrible infection. One even said, “It looks like you’ve had this infection for years” and yet, they never referred me to the see an ENT.
Fortunately, a good friend of mine was over that department and got me in. The first Dr. I saw said the cholesteatoma was too extensive so he referred me to the chief of the department. Long story short, after several hours of surgery, it was discovered that the cholesteatoma had deteriorated everything in my ear. A mastoidectomy was done with a CWD. I lost all of my hearing in that ear and can only use a baha implant if I want to regain hearing. My balance has never been the same, I experience nausea on a daily basis, and struggle with communication since having this additional hearing loss. I had a reoccurrence in 2016 and the recovery from that surgery took me almost a year. However, we only get a handful of weeks off and then it’s back to life we go. So that was a major struggle that caused major depression. I am currently dealing with a double ear infection in that same ear. I’ve been on oral antibiotics 3 times in two months and am on two different sets of drops. I’ve been seeing my ENT every week so she can vacuum out the puss and fungus that grew on top of that infection. A culture was done and I’m now waiting on results. I am trying to get in to see my Otolaryngologist who did my last surgery so that I can get scans. However, it is so difficult these days to get through to speciality Doctors so I’m also waiting on a return call from his office. To top it off, they found a retraction in my son’s ear yesterday and suggested he also get scanned for cholesteatoma. So we will see where we go from here.