Sorry for my bad english for start.
I'm living in Croatia, Europe and i have done my operation 2 months ago, and when i read the other stories, i think that i had the worst operation and the worst income as possible.
I had strong dizziness and been vomiting for 5 days, not been able to walk normaly for 20 days, and now still have some dizzines when i move head left and right, and i can not run. However, the worst part is that i have lost complete hearing in my left (operated) ear. The doctor said that it is a sensorineural damage and that can not be repaired. He gave me some medicine (Betaserc) and told me that there is i slight posibility that some of the hearing might return.
Before the operation i had normal hearing in my right ear (still do) and about 50-60% hearing in my left ear. Now i'm mad with myself that i even went to have surgery, when my hearing was not so bad.
However, i hear just a little bit when i listen to my phone ringing (but i must hold it very close), and whe i scratch the inside of the ear, i hear scratching noises. But, when i talk and hum, i can hear myself only at the right side. Also, when i breath deep for about 20 seconds, the bad ear starts to ring, and then it stops after 30 seconds.
I'm very troubled with the fact that i could never hear again on my left ear, and even more afraid of possible hearing loss in my good ear. I would not have courage to do the second operation.
I wanted to ask you if there is anyone that had a similar problem and that you gain your hearing back after a longer period of time (3 or 4 months). Some posted here that they couldnt hear anything but they gain their hearing back after a few weeks. I'm wondering if i can yet expect something good to happen.
Thanks very much.
P.S. I also want to mention that i now a man who had the same results as i, so i would think that the percentage of the operation going bad is way over this 1 %. I would advice evryone to not do it if their hearing is above the 50 %. But that's just my case, i know, i read many posts where the operation has resulted very well. You just have to pray that you are not among this 1 %.
The following user gives a hug of support to soecc: SuSo (09-03-2011)
Sorry about your bad results... I would strongly encourage you to seek a second opinion from another doctor. However, it is true that sensorineural hearing loss can occur as a result of the stapedectomy, so I would question your surgeon about this. Were you diagnosed with mixed hearing loss prior to surgery, or was the sensorineural diagnosed only after the procedure? Has the surgeon done the tuning fork test on you post-operation? Please ask a lot of questions of the surgeon, and then go find another qualified doctor to check you out. It is amazing and a little scary that there is so much variation in the skill and knowledge out there, but you need to keep at this until you get the answers you need. GOOD LUCK!
After my surgery, i met and spoke with 2 people, that had the same result as mine. They lost their hearing. So i'm now regreting that i went for surgery and i'm sure that the failures are way more often then this 1 percent..
I had a stapedectomy on my right ear almost 12 months ago. It was done by a very experienced & highly regarded surgeon. I had the exact same outcome as you, total hearing loss including full sensory loss. One of the worst parts for me to cope with is not being able to hear my own voice out of the operated ear when I speak. I tried not to speak for months after my surgery as I had trouble coping with the feeling in my forehead caused by speaking. Immediately after waking up following my surgery, I kept telling the nurses and doctors that I couldn't hear my own voice. They kept telling me not to worry, that it was normal, however I have since been told by several ENT's that not being able to hear your own voice indicates the cochlear nerve has sustained surgical trauma during the operation. So basically they should have known immediately following my surgery that I had gone deaf.
I was re-admitted to hospital several weeks after my surgery with complications.
I also have a perilymphatic fistula (a microscopic leak between the inner & middle ear) from the surgery. Some of the other ongoing complications I have are vertigo, constant & severe tinnitus, pressure in my ear, sensitivity to noise (due to the nerve damage), reduced taste and quite a few other things.
I have attempted to return to work several times since the surgery however I'm still not well enough to work. I personally wouldn't recommend stapes surgery to anyone. I knew there were risks involved however I had no idea of the impact the complications could have on everyday life.
Last edited by Administrator; 01-08-2012 at 11:04 PM.
I'm sorry that your surgery went as bad as mine, i can totally relate to your situation. My case was not exactly the same, after the surgery i was feeling really bad, but i didn't notice that i cannot hear my voice in my left ear, and the next day something happened in this ear, i heard a strange noise and after that i could hear my voice only on my right side. Like you, i asked the doctor (not mine because he went on vacation) and he said that this was normal. A month later, when i came for removal of the packing, my doctor diagnosed sensorineural hearing loss.
Now after 5 months, i'm not feeling as bad as you described, but i'm still not "myself". My head still feals heavy and "drunk", and i have tinitus when i'm in loud places. I also have the ear pressure, sometimes more, sometimes less. I'm working and playing football (with difficulties) but it's not the same life anymore.
I have some questions for you.
Did you ask the doctors about the vertigo and the other complications? What do they say to you? Can it be "repaired" somehow? Maybe the removal of the prosthesis would improve your (or my) condition, because the prosthesis now doesn't have a purpose? (i'm thinking about that)
How is your other ear? What is the possibility of your left ear going bad? (for now i don't have problems with my other ear.)
Have you been thinking about some kind of lawsuit against the hospital?
You're definitely correct about life not being the same anymore, hopefully things will continue to improve for you.
To answer your questions, yes I have asked my surgeon everything you mentioned (although I haven't asked him about the lawsuit, haha). I've also asked the same questions to three other surgeons (one of them is a ENT professor who is a known worldwide for his expertise in stapedectomy surgery). Every surgeon has a different opinion, and that makes the situation even more frustrating, it's hard to know who's right and who's wrong. Anyway, the vertigo will probably continue but doctor isn't sure for how long. All the doctors have spoken about removing the prosthesis although they're hesitent to go back into my ear (to remove the prosthesis) in-case it causes the vertigo to get worse again. It's definitely an option for you if your vertigo has settled, although I personally wouldn't risk it, as there's potential for vertigo to flare up once the ear's re-opened. I would like to have it removed as it causes a bit of 'vibration' in my ear, especially if I'm in a loud environment or someone is standing close to my ear whilst speaking. But if you aren't having those type of issues I wouldn't have further surgery. In regards to the otosclerosis going into my other ear, unfortunately it already has. It started in my right (operated) ear when I was very young & stayed in just one ear for approx 20 years. It then moved into my left ear early last year & that's when I decided to have the right ear operated on (very bad decision!).
I went to enquire about a hearing aid before my surgery but I was too vain to wear one (even though no-one would have been able to see it with my long hair). I now can't believe I put myself through that horrible surgery due to my vanity. I actually started seeing doctors about the surgery 15 years ago & I was so scared to have it I just kept putting it off, now I'm glad I did otherwise this may have happened 15 years ago. I'm guessing you sensory hearing loss is too extreme to be corrected with a hearing aid?? Has your surgeon spoken to you about a cochlear implant, that's an option for both of us but there's no way I'm going to walk around with a little box poking out the back of my head. I may consider it in a few years time when hopefully the implant will be internal rather than external. It's no fun being almost deaf & it's embarrassing when people think you're ignoring them (when in actual fact you just can't hear them). Also, not knowing which direction sound is coming from is frustrating. Are you having problems coping with only hearing your voice out of one ear??
Also, EVERY surgeon i have seen about my problem has said I must never have surgery on my one good ear, as there's a chance the surgical complication could happen to it. If it did, that would mean total deafness in both ears and the only hope of regaining any hearing would be a cochlear implant.
Last edited by Administrator; 01-08-2012 at 11:07 PM.
You are right when you are discribing this as a horrible surgery. Did you hear anything in your bad ear before the surgery? And 20 years ago? My hearing was about 50 % (40-50 db). People should not go to operation as long as they can talk to a phone with bad ear. And the doctors should tell this. I know 2 people who had the same result as me, so i think it is much more then 1 % of this bad results.
Yes, my doctor told me about the cochlear implant but this a solution only if you cannot hear at all because the sound through the implant is different then the normal sound. The hearing aid cannot help me.
At first it was really hard to cope with hearing my voice only on one side, but now i'm getting used to it. Bigger problem for me is the "heavyness" and "drunkness" in my head, and situations when i'm in places where are lot of people or loud music, and then my bad ear feels stuffed and i hear shushing noises. Thats why i think that removal of the prosthesis would help me in these situations, so that noise would go away.
About your left ear, that's the biggest fear for me. Can i ask you how old were you when this started and how old are you now? I'm 36, and i started noticing my problem about 2,3 years ago. For now, my other ear is OK, and the doctor said that i must not think about it, but it is hard. You said that it took 20 years to start in the other ear, which means that it will probably happen to me, sooner or later. How did you notice that? Did you have some other symptoms in the better ear before they diagnosed the otosclerosis? How bad is it? What will you do now? I'm terrified when i'm thinking about that, and honestly i would not know what to do.
And my last question, did you hear something about a doctor in Australia who had success in treating deafness? It was all over the internet a few months ago, so i'm wondering if you have any information about this.
Yes I had about 50% hearing in my ear prior to surgery. The loss was conducive with no sensory involvement. My cochlear was in perfect condition pior, however it now has 100% irreversible damage.
My otosclerosis was contained to my right ear for a very long time. It moved to my left ear last year & the hearing went bad very quickly (I think within about 6 months I could really notice how bad it was). My surgeon told me it's quite common for the disease to stay in only one ear, so you should try to stop worrying about it moving ears, there's a big chance it won't happen & worrying isn't going to help. Also if it does move into your good ear, you'll be able to get a hearing aid to correct it, but make sure you definitely don't let anyone operate on it! I had an appointment with yet another ear surgeon yesterday & he said he recommends for all his patients to try hearing aids prior to surgery (due to the risks involved with stapes surgery).
The main thing I noticed when my otosclerosis started in my good ear was loss of hearing & that the ear felt blocked (like a full feeling in the canal). I initially thought there was fluid in my ear, that's what it felt like but once the specialist did a hearing test, he was able to confirm it was the otosclerosis in both ears.
I haven't heard anything about an Australian doctor curing deafness, I'm sure if it was legitimate then one of the many surgeon I've seen over the last year would have mentioned it to me. The surgeons I go to in Sydney are Australia's leading doctors and one of them was the first surgeon in the world to do a cochlear implant, so he's definitely up-to-date on new procedures.
Soecc, I feel sad that you're stressing about your good ear. Please try and think that even if the otosclerosis does move into that ear in the near future then at least you can get a hearing aid. The hearing aids are so tiny now you can't even see them. There are some out that get inserted deep into the canal and stay there for months without needing to be changed & you honestly can't see them at all. I'm sure your disease won't spread anytime soon, it took 20 years for it to happen to me! Even if yours moves to your good ear in 10 years time, there will be an easy & fool-proof way to fix it by that stage, there are researchers constantly working on ear implants. My surgeon told me that cochlear implants will be a simple little implant inside the ear in the near future, how good will that be!
I have gotten to a point where I realise that worrying about my good ear is not going to stop anything happening to it, so what's the point in worrying. Even if something does happen then it can be fixed with a cochlear implant. My doctor put a trial cochear implant on me so I could hear what it sounds lik, it was amazing, I could hear again out of my deaf ear. The sound wasn't totally natural but it was acceptable. Please try not to worry & please feel free to ask me anything. I can honestly say I know how you feel.
Last edited by Administrator; 01-08-2012 at 11:17 PM.
Just wondering how everything's going with your ears?
I also wanted to let you know that I think the doctor from Australia you heard about in regards to curing deafness was probably Professor Graeme Clark, he developed the Australian prototype of the cochlear implant (in the1970's). I heard on a television show tonight that Professor Clark is currently working on an improved version of the implant & the media is calling it a cure for deafness. So I'm guessing that's what was recently on the internet.
Last edited by Administrator; 01-08-2012 at 11:16 PM.
I'm very sorry that i didn't reply to you but i've been very busy and somehow i forgot. Yes i wanted to explain to you that i didn't mean that this doctor found the cure, but that he's working on that, but i've heard that this doctor was working on some kind of gene therapy that can "wake up" this hair cells in the middle ear, and that this might be a real cure. But these are also good news (about an improved version f the implant).
You are right when you say "don't worry" but it's really hard. Now every little thing that i feel in my good ear, worries me. For example, one day i felt little pain in it. And i can often hear heartbeats in it (my surgeon said that this is not connected with otosclerosis), and it is always on my mind. For now i can hear very good and unless i'm in a noisy environment, i don't have problems comunicating. I hope that it will not move in my good ear.
My operated ear is the same, sometimes i feel pressure and my head is not 100 % yet. I hope that my head calmes down and that i get used to hear only on one side. I'm slowloy getting used to it, but it's not the same any more, you know it. I wiil go next month to my surgeon to talk with him about getting the prosthesis out. I think that the prosthesis might be a reason that my head is a little blury, and that i hear lot of static noise when i'm in a noisy environment. I also can hear the phone ringing when i put the speaker directly on my ear. I have some "traces of hearing" as my surgeon said. I would never go to this operation if i knew what the risks are. I thought that the only thing that i can loose is this 50 % of hearing that i had, but i didn't know that the sensory loss is so bad.
I have a question: What was this "trial implant" that you are talking about? How is it possible that you could hear again? I haven't heard about this trial implants.
About your "good ear", how bad is it now? What will you do? Do you wear hearing aid? If you do, what's the sound like?
Talk to you soon, Soecc.
Last edited by Administrator; 01-08-2012 at 11:16 PM.
I hope you had a great Christmas. Happy New Year to you and your family in Croatia.
How's everything going with your hearing?
I think I know what you're talking about regarding the 'gene therapy', could it possibly be 'stem cell therapy'?? I spoke to my surgeon about it and he said there are trials being done but it's very new at this stage. Apparently it's something to do with the hair cells in the cochlear. I asked my surgeon to keep me in mind once trials start in Australia.
The trial implant I mentioned is actually a 'pretent' cochlear implant. My surgeon has one in his office, he put something on my head and held a very small box against the back of my head and when he spoke into my deaf ear I could actually hear him, it was amazing. I could also hear my own voice when I spoke. He does quite a few cochlear implant surgeries so I'm guessing he has it there so he can give patients an idea of how things will sound if the surgery is successful. Apparently there's also another option of trialing the cochlear implant by wearing a headband type thing with the little box attached to it. Someone in my family knows a lady who wore it for a few weeks whilst she was deciding whether to go ahead with the actual implant surgery. Apparently she was very pleased with it and was planning on having the surgery. She had gone deaf from a stapedectomy, seems there are quite a few of us around!!
To answer your question regarding hearing aids, yes I do now have to wear a hearing aid in my 'good' ear. It's very tiny and pretty much invisible (no-one can see it, thank goodness!!). It's pretty high tech and top of the range but definitely worth the money. I was determined to never get a hearing aid but now I have it I can't believe how different everything in my life is. My good ear got very bad very quickly and I could barely hear anything. I didn't even want to go to the shops by myself as I couldn't hear anything people said to me, it was terrible. Now I have the little hearing aid I feel like I'm part of the world again. I put in in as soon as I wake in the morning & take it out last thing at night. I have it in constantly, every moment that I'm awake I wear it. The sound quality is very good, definitely not 100% natural sounding but pretty good. I can actually hear some things that I people with normal hearing can't even hear, it's wonderful. If only you and I had gone for a hearing aid instead of that horrible surgery!
Have you made any decisions regarding having the prosthesis removed? I know it's a very simple operation but for me I'm worried about further vertigo. I want my removed but I can't risk having it done at the moment.
Take care and talk soon
Last edited by Administrator; 01-08-2012 at 11:10 PM.
I tried to reply last night to your original post but I couldn't get it to work. Anyway sorry about the delay, hope you didn't think I was ignoring you.
I'm sad to read about your complications, it upsets to think about someone is else going through what I've been through. I promise it does get better, it takes a while but eventually you will start to feel better.
You're right when you talk about the drunk feeling in your head, it's not a nice feeling and for me it's been going on for 13 months, although definitely not to the extent that it was initially. My surgery was December 2010. I googled your complication of "glucomia" however I can't find anything that actually explains what it is, what is it exactly????? The ongoing symptoms I have from my complications include total deafness to the operated ear (the surgeons call it a dead ear), vergito, reduced taste, vibration in the operated in from the prosthesis, constant loud roaring/buzzing tinnitus and worst of all is the perilymphatic fistula. I have several other minor things such as everytime I smile or raise my eyebrows I can feel my face pull my ear, the right side of my head is numb but they're pretty minor compared to the main things. One of the surgeons I saw told me the chance of all the complications I had happen is about 1 in 200,000, so sounds similar to your story about being hit by a bus. My vertigo has improved considerably & continues to do so, I initially coudn't my head without everything spinning but it's nothing like that now. I'm sure you will continue to see improvement in yours also, it takes a while but eventually it will get a lot better. What other symptoms do you have?
I know what you mean about looking forward to wearing the hearing aid. For about 5 months after my surgery, I refused to even consider getting a hearing aid, I felt like wearing one was accepting I really had gone deaf (even though I cleary had gone deaf I just couldn't accept it). My dad made me try one of his & I just couldn't believe it, I could actually hear things. That was the day I actually got some of my pre-surgery life back!! The reason I decided to finally have the surgery done was so I could join the Police force, so I found it hard to accept that part of my dream was lost in the surgery also. Anway the hearing aid I have is a Moxi, I can't remember the model but it's the top one in that brand. It cost around $4,500. I spoke to a few surgeons about the aids that transmit sound to the deaf ear but none of the surgeons recommended them. With the one I have, it sort of does sound like I can hear a bit on the deaf side & I have a much better idea which direction sound's coming from (how horrible is it when you have no idea where a sound or voice is coming from....embarrassing). Make sure you shop around for your hearing aid, the prices vary significantly between stores.
In regards to the cochlear implant/baha, I'm honestly not sure which one it was. The sound was quite robotic but very clear & loud. I'm not considering an implant at this stage, my doctor even said I've been through way too much already. Plus, there are sometimes complications with the implant surgery and I'm not prepared to take that risk just now.
When you speak, do you only hear your own voice out of only your good ear? If so, I'm sure you'll agree it's a horrible feeling, it's something I'm still trying to get used to. My voice sounds so flat and muffled but having the hearing aid helps quite a lot with that also. Apparently my cochlear sustained 'irreversible surgical trauma', prior to the operation, it functioned perfectly. Do you have much hearing loss in your good ear?
Talk soon, Aussie Girl
Last edited by Administrator; 01-08-2012 at 11:12 PM.