Bad experience from a cholesteatoma anyone?
Posted , 3 users are following.
Anyone had a cholesteatoma that had grown towards the brain? how long did you take to recover? i had one in my left and had holes in the lining of the brain and the right had eaten into the bone and brain had dropped by a couple of cm's. since all this i feel so unwell even thou its been removed. last op was 5 months ago. ive been off balance since January (its driving me nuts) i have pressure in my head and ears upon getting up which is the most worrying part, its like i haven't got enough blood going to my head. cholesteatoma has completely changed my life, i feel incapacitated by it. ive had a brain scan and waiting for results. i just feel like its damaged something in my head but its finding out what. The hard part is no one can relate to anything as nobody has even heard about when you tell them. my consultant thinks ive had it since i was a child but i dont reckon as im 36 and it would have reached my brain way before now. i belive its the eustachian tube in my ears are not functioning properly and caused the cholesteatoma. Im paranoid it will grow back
0 likes, 5 replies
kamy52095 nina88141
Posted
I truly believe that a neurotologist might be your best bet.
You should explore any possibility to get and see one as soon as possible.
The most unfortunate situation is when there is leackage from the brain happening.
We should not confuse a neurotologist with a neurologist though.
Hope this helps.
ripstone kamy52095
Posted
i had a neurotologist do cholesteatoma surgery on my left ear at Johns Hopkins in 2012 . It's back have to have surgery again this time Ive told them to just canal down and ablate the ear and remove all disease from mastoid as I've given up . im already sensorineurally deaf and it cant be restored so i just want it done for good
kamy52095 ripstone
Posted
So sorry to hear that the nusty ch.is back and also that you are experiencing sensorineurally deafness. I'm sure you explored all avenues prior to make this radical decision.
I've been myself diagnosed with CH.2 months ago.Mine is the result of a poor ET dysfunction. My hearing in that ear is almost 100%, I have no balance issues, no headaches, no eyes problems, never had not even one ear infection (otitis) and yet my ENT specialist who successfuly repaired my eardrum 11 years ago helping me achieve 85% hearing gain on my right ear just diagnosed me wit CH in the left ear. He also told me that the good news is that my mastoid and the internal wall between the internal ear and the mastoid cavity is intact. He opted out for CWU,postauricular approach, reconstruction of the hearing bones affected (if???) and tympanoplasty all in one attempt. What scares me the most is balance loss and diziness post op. Wishing you all the best of luck.
nina88141 kamy52095
Posted
Honestly don't worry about your balance. if your not experience it now yours will last a few days and it wont be bad just a little off balance. wishing you the best of luck!
kamy52095 nina88141
Posted
Thank you so much Nina for encouraging me. I am so mad as my ch.is a result of sinus surgeries going wrong. My physiology of the right side of the nose suffered changed through out 3 surgeries to the point that now it became abnormal. Due to this abnoramality my ET are not working and are getting clogged, both sides. For the time being, though the ch. started developing on my left ear only which is a big surprise to me as I have never had any issues with my left ear. Even now I have no one symptom anybody on this forum or everywhere else is describing. My left ear is very quiet with no discharge at all. My surgeon mentioned me a bunch of possible post-op issues like balance loss, diziness, facial paralyzis, taste issue, etc. I am quite scared and very afraid. I'll ask for an MRI next week hope I can find the extent of it. In your case as mentioned a neutologist could be very helpful. I am located in Canada and I'm hopeful to benefit of an advanced technology. All the best wishes. K