Posted , 5 users are following.
I was diagnosed with cholesteatoma and had my operation nearly three weeks ago. They removed one of my bones as the disease was really big and spreading to the exposed part of my brain.
i have now loud constant ringing in my ear and i can also hear my heartbeat. Has anyone else suffered with this?
Any replies would be helpful, thanks!
0 likes, 8 replies
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jennifer38581 millie96877
Posted
hi, yes I had similar op and had severe titunus for weeks after. it will subside
millie96877 jennifer38581
Posted
hi, that has made me a bit more hopeful as its getting my very down in the dumps thinking its going to be like this forever!
nina88141 millie96877
Posted
I had cholesteatoma in my left and right ear with Tegmen dehiscence on both sides. i got constant ringing as well! The sound of the heartbeat could be from a semicircular canal dehiscence if yours grew that far hence hearing your heartbeat etc. Maybe mention it on your next follow up. I'm constantly off balance and super sensitive to noises at the moment even thou my hearing is not great. Having cholesteatoma has changed my life...i hope i return back to normal!
millie96877 nina88141
Posted
hi, how long ago did you have your operation?
nina88141 millie96877
Posted
it was 5 months ago the last operation
Michelle_86 millie96877
Posted
Hello, sorry to hear you are having a tough time following surgery.
My son has had a total of 8 operations on his ear because of extensive colesteatoma. He was was first diagnosed at age 7 following a year or more of chronic infection, puss from the ear, and chronic pain. His first operation took over 9 hours long and sadly he lost all 3 ossicles bones in the ear, colesteatoma had extended in to the base of the brain with nasty build up of Infection and they had to open the mastoid cavity up large too because of the damage. He woke up with profound deafness in that effected ear.
He then underwent surgery on the ear every year rite up to last year when he had a compete obliteration and blind sac closure to try and control the chronic infection. It has worked and the ear has been infection free but he is profoundly def, complete dead ear so he will never ever hear in that ear again not even with hearing aids. His vestibular balance organ was removed and his balance has been effected terribly but with intense physio he has it under control.
My son has said he sufferes bad with constant tinitis and he also can hear his heart beat too. He finds listening to a low soft sound like the sound of the sea, or soft sounds like that can ease the high pitch sounds he hears. It will get better as you adjust to the changes, it does take a lot of time but try and be patient it will come.
My boy has now been told he has it in the left ear now too and is on the waiting list for surgery for colesteatoma. He may well wake up totally deaf we just don't know. My boy is 14 years old, he is a true inspiration because whatever challenge that is thrown at him he faces and trys his best to carry on. I really hope things get better for you.
My son said his way of coping throughout is that he always thinks of other people in the world that are worse of than him. He said his coping mechanism is no matter how bad life feels and gets there is always someone else worse of than him in the world.
Good luck
nina88141 Michelle_86
Posted
Your son in amazing how he has coped mentally so young! Thats exactly what I say to my mum....it could be a lot worse. Thats also been my coping mechanism. My consultant is very laid back and says no way will it grow back, but im not 100% convinced and don't want him to not check in the future. Do your son have his ears cleaned every 3 months? I'm supposed to have that done for the next 5 years I think to prevent it growing back. If I had the money I would pay for the laser surgery in the future as im terrified of it reaching my brain again and not even realising its back! Its a terrible thing to have amd nobody i speak to have ever heard of it. ive had problems all my life with my ears and im convinced its the eustachian tube not working thst had caused everything. My consultant said i must have had this since I was very young to reach the brain, but I think not as I'm 36 and I doubt it would tske 30 year's to reach the brain
Michelle_86 millie96877
Posted
Hi millie,
Yes my son used to have his right ear suctioned and cleaned with the micro scope to remove keratin and puss on a 2 weekly basis because it got very bad. He now had a blind sac closure so they can jot clean the ear canal any more. Blind sac closure is where they put fat from the stomach and closes the hole to the eat. My son had his done by an international specialist at Ipswich hospital and instead of using fat from stomach he used live cells to close the ear hole so. That he would not have to undergo more surgery as the live cell grows with him as he gets bigger and older.
His first operation we was told it was at the base of the brain and that it was lucky they caught it when they did very very scary stuff. I really do hope u recover quickly and the nasty ringing in your ear settles down for you.
Best wishes
Michelle