I thought I would do this to try and help people deal with Cholesteatoma. I'm 18 years old and been diagnosed with this problem half my life so I kinda know a little about dealing with it. I've had half a dozen major surgeries and I still go to hospital every 2 weeks for regular treatment and have been told this might be a lifelong problem. I wake up most morning dizzy and in a considerable amount of pain. Being completely death in the infected ear I think the thing that bothers me most though isn't the hearing loss or the pain it's the tinnitus. With another operation coming up I thought I should try and help someone else if I can. If anyone has any pain, regular bleeding from the ear or even something like ringing in the ear I advise you to go and get it checked straight away, it might not be anything major but It's better to be safe than sorry. Go see a doctor or even speak to one of your parents about it just don't ignore it. If the worse case scenario is Cholesteatoma just know that you never have to deal with it alone, If you ever feel down talk to someone about it. I hope this can help someone.
Hey there Ryan, I was 16 when I had my first surgery due to the same problem, it has started destroying the skull now I have a very thin layer of skull . I am now 44 and understand your pain it has been a lifelong battle .i just seen my specialist Friday as to where now another surgery in now set for Dec. 12.This will make my fifth surgery for this.i like you urge everyone to not to ignore the little signs . Doc says he will be using a bio active glass material to fill in the mastoid cavity, as it is horrible for me to have the regular cleanings I am supposed to have.i too am deaf in the effected ear. I haven't heard of many people having this problem until I really get to checking on it. Good luck in the future
Can I say thank you. My daughter is twenty with cholesteatoma, because she has learning difficutlies, austism and now hearing loss she finds it difficult to explain what she experiences - so thank you for helping me to understand this from a point of view of the patient.
Hi Debrorah
i have just come across this thread and have recently had a radical mastoidectomy after suffering for many years with ear infections and never correctly diagnosed..Just over a year ago it was found i had a brain abcess above my bad ear but they still don't know for sure if it was caused by the ear infection.I am having to go regular for cleaning of my ear as well.I was told that my cholesteatoma was big and it wasn't known how big till they started to operate.Did you find you was still getting sharp pains behind your ear a few months after the op which come on and off with numbness round the corner at times the dr's seem so casual and say its to be expected.I have done a bit of research and it seems alot who have this op and removal of the cholesteatoma end up having another op which i really don't need to think i have to do it again.How has yours started to destroy your skull?i actually had a crainotomy last year when they discovered the brain abcess and i get some weird sensations from both ops
Hi Ryan i have actually sent a reply back to Deborah instead of you but you will see it anyway.Its by chance i found this site.....
My daughter has just had her fourth op. She has been lucky so far, she now has tuille phenomonon which is a huge issue, and now wears ear defenders, but finds the dizziness and sickness really difficult to manage. She has tiny ear canals and tiny eustachian tubes, and we have been told that this will be ongoing. I really stress about this. Her last op has left her without the ability to taste food. -
Hi ryan i too have choleseatoma after having it over 20 + years now, ive just be diagnosed with polps in the same ear, i hate having this, its such an unpleasant smell, i can taste it (sometimes aswell as smell it) I never give people a hug on my left side (as i worry they too can smell it) I feel dizzy, and feel as though my face is going numb on the one side. you are right that people should be aware about any kind of disturbance in there ears and should get them checked out. When i was first diagnosed with cholesteatoma i'd never heard of it before, let alone spell it, but over the years i've got used to it, and should be having another op soon and bioposy on the polps, hopefully i get less discomfort and pain in my ear. Sometimes i feel as though i've been punched in the left side of my face from the pain.
I live in the USA. Had cholesteatoma surgery Nov. 2012 at Johns Hopkins Hospital in Baltimore, Md. by Dr. John Carey supposed to be one of the best in the country.. I was deaf in the left ear from c-toma before surgery. Though the surgery was necessary I wish I never had to have it. Here it is 5 months shy of two years and I still have to endure monthly cleanings and my balance has never returned fully. I hate the disease as it has literally ruined my life. I will see the Dr. June 4, 2014 for yet another cleaning. I can tell my tinnitus though very low and sometimes non existent and my fluid balance disorder is coming from a nerve. I am also left with no sense of taste or smell. I will ask my Dr. this week if he can cut whatever nerve is ruining my life. I can't drive and when walking I must be very careful as my balance sucks. I know the surgery is necessary as without it too much damage and death can occur but if I had it to do over again I am not sure I would go through with it. I don't mean to frighten anyone but be prepared to have some altercations to your lifestyle.
I completley agree. My daughter has had four operations. She has learning difficulties also, so helping her to understand is so difficult. She complains of tinitus, dizziness, echoing etc so often it makes me feel quite helpless. She lost her sense of taste after the last operation. She hates having them, and hates me for making her have them. Obviously she has to. I took sodium valproate for my epilepty and it affected her, in such a way that it has added further complications to cholesteatoma. I find it really useful to read posts such as this, as I need to understand her experience, due to her learning difficulties she finds it difficult to explain to me what she experiences, and I so want to help her.
I fully understand. I am getting better very very slowly but almost two years is a bit much. I will be more than willing to keep you informed. Johns Hopkins is supposed to be the best hospital in the world but I guess there is only so much they can do for this. They keep telling me I am improving. Ya could of fooled me. L:OL.
I have come to believe if by the end of the second operation, a third is looming, then you are in for the long haul. I find it frightening, especially as so little research goes into this area.
I have had 3 and a forth is looming. The forth is because my eardrum keeps blowing. If my ear settles down they will then close the eardrum again. By the way my problem started after a bad cold that turned into glue ear. Unfortunately, ear weakness runs in the family. Both my mother and great grandmother had otosclerosis. My poor great grandma never got past a hearing aid. My mother has prosthetics placed in her ears in the 1970's and her hearing was restored. I am fortunate to live in the state of Maryland. Both the University of Maryland Hospital and Johns Hopkins Hospital do extensive ear medicine/surgery. Baltimore Maryland has a lot of hospitals. Sort of the hospital capital of the USA. The old saying here is, if yor're gonna be sick, do it in Maryland. I have been patient but my patience is running thin as I am sick of being sick.
I know you have government medical plans there. We are fighting against it here but if you can check and ask if any of the ear doctors there trained at Johns Hopkins. Johns Hopkins purposely educates doctors from all countries. They totally want their trained doctors in all countries. Someone over there likely trained at Hopkins. Over here most ear nose and throat doctors are called Otolaryngologists. When you get into serious ear diseases you then go to a neurotologist. That is where I go now. You might google Johns Hopkins Hospital and read up on their advancements. You can also email them and ask if they can refer you to someone over there that they may have trained in neurotology. There is also a Dr. In Switzerland who has made great strides in this field. I will post his name tomorrow. It's on my other computer and I have spoken to him via email. I believe he is in Geneva.
I just remembered his name. He is ENT Institute, dr. Oskar Kujawski, Geneva, Switzerland. One of the big causes of cot a is Eustachian tube dysfunction. Dr. Kujawski has developed a surgery that clears the tube by entering the tube endoscopically through nose. If I don't get better soon I am considering visiting his institute. He did tell me he is training two American doctors to do this surgery. Yesterday would be soon enough for me.
Hey Ryan and all the folks who've responded below. Thanks so much for starting this post and your inputs, replies and most important of all, your experiences. My niece has been diagnosed with C-toma and we're hoping to try Homeopathic treatment before we opt for the surgery. Your postings have given us very important perspectives. I'll keep you posted.
Ripstone, your input on the swiss doc is much appreciated as well. We'll see if is a feasible option for us.
For those of you who are dealing with this and feeling down, all I can say is keep your morales high and have faith in yourself. You'll be just fine......have faith.....and hang in there!
Hi Ryan,
I've just joined this group and am on a very steep learning curve.
I like your positive attitude and admire you for your willingness to help others.
Please keep us posted on your own progress,
Meanwhile, I discovered that it is possible to get a little gadget that helps with tinnitus. When I have more information about it, I'll pass it on. I'm in Australia, and in Summertime the cicadas are very noisy in the trees. My Tinnitus gives me the experience of cicadas all year round, and when it first struck, I found that pretending it was 'only the cicadas' helped me to deal with it.
I have an appointment with the Audiologist next week [for fitting of new hearing aids], and I'll make enquiries about the gadget I saw and pass on the information.
Meanwhile:
Did you hear the joke about the ENT Surgeon and the Dental Nurse?
Neither did I ... I'm deaf.
[laugh or groan at your leisure]
Cheers!
Court Jester
I forgot to mention, I've just been diagnosed with Cholesteatoma, and have joined the Group in search of information whilst I await an appointment with an ENT.
I've been told it could take 12 months just to get in to see him.
So ... meanwhile I'm on a learning curve to discover how to deal with this misleadingly named difficult-to-spell disease.
Hi all
First time for me on any forum site but this site realy helps.
My story.
I had my c-toma removed from my left ear in December 2012 I lost my hearing and balance.
I then had an infection in my inner ear and had to have a radical mastoidectomy in Aug 2013, then had to go to ent every 2 weeks for microsuction.
The infection came back again.
In December 2013 I had a petrosectomy with a dermal fat graft and a blind sac closure, this cleared the lot out filled the inner ear with fat from my stomach and closed the ear off permanently.
in June 2014 I had a BAHA fitted, but it's not that good as I have no cochlea and all the sounds go through my scull to the cochlea in the right ear, hence no sense of sound direction.
The bottom line is.
I have no hearing in my left ear
I dont get any pain and never have
I do keep getting headaches.
I don't suffer with wet ear
I can put my head under water now.
I don't have to go for microsuction any more.
Whilst the operations were unpleasant they have had a positive effect on my health, but I still have very bad balance problems and don't know how to resolve it.
I turned 60 the other day and feel and walk like I'm 80
I hope this is of any use to anyone especially the last operation I had, it made a big difference
Regards to all
hi,
i was just found c toma for my 12 year son and now started hoeopathic treatment for it want to know if anyone in this forum have tried out homeppathich treatment and it could get better
Hi Ryan am new to this forum/group have just had Cholesteatoma surgery 3 weeks ago, 4 hours in surgery had a skin graft on ear drum as skin was growing upwards on ear drum and had gone most of the way round the drum. Ear drum was diseased also which Doc scrapped away and removed excess skin from behind eardrum also.
Had packing removed from inside ear Friday just gone and a hearing test which showed hearing loss of 20% but was told this is to be expected as only just had surgery. Had to ask lots of questions to get answers but hopefully hearing will return to near normal but maybe up to 3 months before this happens. Not alowed to get wet for 3 months no flying and keep cotton wool in ear to infection. Reading other people's stories concerns me a little but hopefully will turn out fine. Have another doctors appointment 4-6 weeks hopefully by then the muffling will have stopped slight ringing in ear but not to bad.