So, around 6 years ago I was told I had a cholesteatoma quite deep inside my left ear.
I underwent 3 operations, the first was to look at the severity of it, the second was to remove it and to reconstruct one of the bones that had been eaten away and the third was a double check to make sure it was gone.
But 6 years have passed now and I get quite a lot of pain inside my ear after sleeping on it or going underwater.
Everytime I go to the GP they take a look and tell me that it's a build up of wax that's causing the issue.. I have a very large collection of ear drops in the medicine cupboard 😂
Does anybody know if it's possible that the cholesteatoma has come back?
Or is the discomfort just a side effect of the surgery and is something that I'll just have to deal with forever?
Thanks.
Hi lewis i had 2 surgery and another coming up this Wednesday. Yes this Disease will always come back. I had my 1st surgery about 10 years and the 2nd one 1 year later. Make sure u use ear plugs before u go swing. And try to keep it dry.
Hi! This is to finish my earlier communication. Yes, they often come back because it can be hard to remove it all due to its location and if any is left there is over a 50% chance it will grow back. It is pretty common for people to get yearly MRI / CT scan to check for new growth. If you have chronic ear infections that antibiotics don't seem to really handle, also if the discharge is really foul smelling those are some strong indicators that it may be back. I would get on the phone with the office of the specialist that did your surgery. Two resources I can recommend are a facebook group for Cholesteatoma - just put the term in the facebook search bar and also a website called vestibular.org Good luck!
Yes, c-toma can grow again, especially if all of the cells were not removed during your surgery. My husband had a re-occurance after his first surgery, and it is now exteriorized. Our youngest son also had c-toma. His surgeon was meticulous and kept him on the table for over 4 hours. Our son lost all 3 of the hearing bones and a sizeable portion of the mastoid. He has major hearing loss on that side, but absolutely no regrowth. We were told that he must continue to see an ENT at least yearly to ensure no regrowth. Right now we see our ENT every 6 months.
Hi joe,
When you say always come back does that mean everyone who's suffered with it in the past will definitely get it again?
And thank you I will be sure to keep the effected area dry in future 😊
Hello Carol,
Thanks for answering my question.
Wow that's unfortunate, I hope you're family are well.
The second surgery I underwent was 5 hours long so hopefully he did a good enough job the first time.
Is it hereditary then? Would hate to think that my son could get it as it is a rough time.
Hi Rachel, thanks for your reply.
I've been in touch with my GP who has now referred me to hospital for a checkup.
Thankfully though I haven't had any of the symptoms you have mentioned there so fingers crossed it's just a minor issue.
Thank u for the wishes. And for the reoccurring of this it will happen again. Im now under going a ear canal down surgery. I hope ur son never gets this problem. Best wishes Joe
No, It's not hereditary. That was our first question to our boy's surgeon.
Don had a lot of ear infections as a toddler. We live in Florida and had a pool, so his ear was constantly wet.
Just be watchful over any kind of ear infection, especially if there is a discharge.
Our original ENT assumed he had a perfed eardrum. The eardrum had actually retracted. Our surgeon took one peek and knew it was c-toma. It's been 3 years post op and no regrowth but he had a radical mastoidectomy canal wall down procedure.
My son is 27 years and has been dealing with chlosteatoma since 7 years old. Had been told surgery would fix it to have it come back over and over again. His left ear is totally destroyed. Right is somewhat ok. Had had a total of 6 or 7 surgeries on the left, 4 on the right. Every now n again he still has problems but it will never go away.
Thank you joe, all the best with your upcoming treatment.
Quick update,
Payed a visit to ENT to have both of my ears cleaned and examined.
Seems as though all of the discomfort was coming from build up of wax which was blocking water when it was entering my ear and applying pressure on the ear drum whilst I was sleeping on it.
I will be sure to take the necessary steps to ensure the effected area keeps clean and dry.
As far as any signs of cholestatoma re-growth, both ears look to be in a healthy state besides being rather enflamed after the wax removal, which was extremely uncomfortable😅
I would like to thank every one who's posted their personal experiences and tips. It is much appreciated and I wish you all the best for your and your families treatment in the future.
Thanks all.
Wow, that's a long time to be dealing with it.. all the best to him with his upcoming treatment and thanks for your reply Carrie.
Hi ! Carol im 43 and uder going an ear canal down this Wednesday. How is your son doing and is there any concern i should be worried about . This is going to be my 3rd surgery. I will be in university of miama. Again.
I think you will be shocked at the changes in the technology. It really helps with your recovery time. You may want to borrow a cane if you don't have one as dizziness can be bad for the first couple of days.
The worst part for my son was the ride home. He was a little guy, so I sat in the back seat and held his head up. We live about an hour away from Pensacola, and it was all highway driving.
Definitely make sure that you have the pain meds ready. We were given a script for liquid Lortab and ended up going to a local compounding pharmacy.
My son was back to school within 4 days of the surgery, so recovery is pretty quick.
Almost forgot...button down shirts will be your best friend for quite a while.
Good luck with your surgery. I hope everything goes well for you.
Thank you for the reply. Unfortunately im allergic to pain meds. And i didnt take them the last two times. Pain doesn't bother me as much as most. I was wondering if there was any thing i should be concerned about with the ear canal down. Does he get dizzy at all or does he live a normally life. The doctor telling me there will be a large hole that will permanently stay. And my life will have a lot of changes. Any input would be great. Thanks again for the reply.
He does get dizzy occasionally, but it is not enough to stop him from doing things. His eardrum is intact, so I know that helps.
The ear canal is much larger than his non affected ear. It's not really noticeable unless you stare at it. There was some swelling after the surgery which made his ear protrude for about 6 months.
There have been a few somewhat minor changes to his lifestyle. We no longer let him swim without an earplugs when we go to the beach. He is seen about every 6 months by the ENT. His hearing is definitely gone on the bad side, but his good ear compensates. Due to the erosion of the hearing bones and loss of most of the mastoid, he was not a candidate for prosthetics.
Thank you Carol. And im happy to hear he is still doing what a kid should do. Unfortunately I like to skydive and ride motorcycles. So im thinking that this is coming to an end. But I wont ever give up doing what i love. THANK YOU VERY MUCH FOR SHINNING A LIGHT ON THINGS FOR ME. HOPE ALL STAYS WELL WITH YOUR FAMILY.