Cholesteatoma

Posted by genuinekim @genuinekim, Feb 8, 2019

Hello I thought I would add a discussion about cholesteatoma. I posted a bit about my story under introductions, but I wanted to know if there are others with cholesteatoma here.

Hi @genuinekim, welcome to Connect. I'm tagging @funkynotes who has also talked about cholesteatoma.
Kim, has your hearing loss changed since the recurrence and surgery last year? Did or do you also experience balance issues?

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@colleenyoung

Hi @genuinekim, welcome to Connect. I'm tagging @funkynotes who has also talked about cholesteatoma.
Kim, has your hearing loss changed since the recurrence and surgery last year? Did or do you also experience balance issues?

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Yes to both. After my first two surgeries I had a about a 40% loss in my effected ear. My most recent audio test showed a 89% loss. The reoccurrence destroyed a portion of the mastoid bone and left horizontal canal fistula,

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Hey there. I had my first cholesteatoma removed in 1996 in my left ear along with ossicukar chain reconstruction. In 2014 I had a cholesteatoma removed from my right ear, and again in 2016 in my righ ear along with ossicular chain reconstruction. In 2018 had another removal from my left ear. Now last week I had the titanium implant that was put in, in 1997, removed and a cartilage one put in. 4 surgeries in 5 years. I hope I'm done for awhile now.

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@angiee

Hey there. I had my first cholesteatoma removed in 1996 in my left ear along with ossicukar chain reconstruction. In 2014 I had a cholesteatoma removed from my right ear, and again in 2016 in my righ ear along with ossicular chain reconstruction. In 2018 had another removal from my left ear. Now last week I had the titanium implant that was put in, in 1997, removed and a cartilage one put in. 4 surgeries in 5 years. I hope I'm done for awhile now.

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Hi @angiee, welcome to Connect. Wow, 4 surgeries in 5 years. I bet you have seen the last of surgeries for some time. Can you tell me more about the titanium implant that you had done last week? How is the recovery going?

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Hi @colleenyoung ! Fingers crossed that the surgeries are done for now. 🙂 I actually had the titanium implant removed (it was put in, in 1997) and had it replaced with a cartilage prosthesis. Recovery is going good. I've got to remember not to overdo it and listen to my body. I was frustrated that I was too tired and worn out and not able to do anything around the house, BUT then I remembered that it had only been a week since surgery. Lol I sneeze and it's uncomfortable, I laugh or turn my head too quickly to the side and I'm reminded that yep… housework can wait! I am heading back to work today for a few hours. Going to do that a few days this week to get back in the swing of things. (Family owned men's retail store.. where my dad is my "boss" and brother is the manager. ) I was told I can just sit and not wait on customers, but help with other things that need attention asap. So.. off I go. Thanks for asking about recovery!

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@genuinekim

Yes to both. After my first two surgeries I had a about a 40% loss in my effected ear. My most recent audio test showed a 89% loss. The reoccurrence destroyed a portion of the mastoid bone and left horizontal canal fistula,

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Did you have the fistula repaired?

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I had a cholesteatoma removed in 2005 in my left ear due to ear infections and perforations.The Dr claims the air conduction hearing loss in that ear is not the result of the surgery. I still connect the two though because the surgery and hearing loss happened so close together. My ear drum is deformed from T-tubes and surgeries. I've had three doctors give me the same opinion that ossicular chain reconstruction would not give me substantial improvement to warrant the surgery. I would be eligible for a cochlear implant if my word recognition was worse in my "good" ear. I don't have balance issues.

Liked by Juli

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@angiee

Hey there. I had my first cholesteatoma removed in 1996 in my left ear along with ossicukar chain reconstruction. In 2014 I had a cholesteatoma removed from my right ear, and again in 2016 in my righ ear along with ossicular chain reconstruction. In 2018 had another removal from my left ear. Now last week I had the titanium implant that was put in, in 1997, removed and a cartilage one put in. 4 surgeries in 5 years. I hope I'm done for awhile now.

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@angiee I just found you on this site as I was looking for something else. I am stunned by everything you have been through. When we adopted our son Yu Xia at age 6 from an orphanage in China he was deaf in one ear, had cleft lip and palate, and weighed only 25 pounds. He had many surgeries in Boston, one of which was for a rapidly growing cholesteatoma which would have killed him had they not discovered it when doing a mastoid surgery. His last surgery was at Tufts when he was in his early 20’s. Yu Xia is 30 now, and I worry about him constantly as he is pretty much non verbal so we don’t know how he feels. He lives on his own now as well. He refused his hearing aids and FM unit as a teen. He had a full ride to UCONN school of engineering but gave up somewhere along the line, and we were helpless to help him. God knows we tried! It is hard to argue with someone who doesn’t speak. We think he has late onset autism, but he was never diagnosed. Can you tell me if cholesteatoma grows back? I am guessing yes.?? Symptoms? The doctors in Boston had told us they got it all, and they were fantastic. Also, what is this titanium implant for? Thank you so much for wading through this, and thank you in advance for any info. God bless you real well! irene5

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@irene5

@angiee I just found you on this site as I was looking for something else. I am stunned by everything you have been through. When we adopted our son Yu Xia at age 6 from an orphanage in China he was deaf in one ear, had cleft lip and palate, and weighed only 25 pounds. He had many surgeries in Boston, one of which was for a rapidly growing cholesteatoma which would have killed him had they not discovered it when doing a mastoid surgery. His last surgery was at Tufts when he was in his early 20’s. Yu Xia is 30 now, and I worry about him constantly as he is pretty much non verbal so we don’t know how he feels. He lives on his own now as well. He refused his hearing aids and FM unit as a teen. He had a full ride to UCONN school of engineering but gave up somewhere along the line, and we were helpless to help him. God knows we tried! It is hard to argue with someone who doesn’t speak. We think he has late onset autism, but he was never diagnosed. Can you tell me if cholesteatoma grows back? I am guessing yes.?? Symptoms? The doctors in Boston had told us they got it all, and they were fantastic. Also, what is this titanium implant for? Thank you so much for wading through this, and thank you in advance for any info. God bless you real well! irene5

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Hi @irene5, I'm sure you've search the Internet thoroughly. None-the-less, I thought I'd post this article about cholesteatoma from Healthline:
Cholesteatoma: Causes, Symptoms, and Diagnosis https://www.healthline.com/health/cholesteatoma

According to the article, cholesteatomas can return and it is important to catch a regrowing cyst early. I'm also @genuinekim and @judysmayo to get their experiences about recurrence and symptoms they experienced.

Irene, does your son or is your able to tell you when he is not well or is experiencing early symptoms like the ear draining a foul smellng fluid or pressure in the ear?

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@julinguyen

Hi @irene5, I'm sure you've search the Internet thoroughly. None-the-less, I thought I'd post this article about cholesteatoma from Healthline:
Cholesteatoma: Causes, Symptoms, and Diagnosis https://www.healthline.com/health/cholesteatoma

According to the article, cholesteatomas can return and it is important to catch a regrowing cyst early. I'm also @genuinekim and @judysmayo to get their experiences about recurrence and symptoms they experienced.

Irene, does your son or is your able to tell you when he is not well or is experiencing early symptoms like the ear draining a foul smellng fluid or pressure in the ear?

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Thank you Juli. Yu Xia will tell us when he is in pain, but he has no sense of smell. I will check on that. Irene

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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.

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@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

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@bttacampbell

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.

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@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

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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.

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@bttacampbell

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.

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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.

Liked by rt061069

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