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Hearing Disorders Message Board


Hearing Disorders Board Index


Ok Guys, here's my story. Share yours with us if you feel comfortable doing so.

My hearing started getting bad when I was 18. I joined the Navy and during boot camp they almost sent me home because of my hearing. I never noticed that I was having hearing issues and pretty much just ignored it until many years later.

I went to the audiologist at age 26 and he told me - "your bone is hardening and doesn't wiggle like it should, it's partially hereditary and very common. Your hearing isn't too bad, just get hearing aids." At that time both ears were affected but the left one was a lot worse than the right. I asked if there was any surgery that could be done to correct it, he said [B]"no, just get hearing aids".[/B] I was young and dumb and took him at his word that there was no surgery available. I was also too worried about appearances and refused to wear hearing aids so I just said "huh?" alot to everyone.

At age 27, I had my first child. I weighed 93 lbs before I got pregnant...and I gained 65 lbs during the pregnancy. I lost all the weight in about 3 months and was back at 93 lbs - That is when my hearing went downhill extremely fast in the left ear. The doc said that gaining all that weight changed the bone structure of my entire body - including my facial and inner ear bones. Then loosing it so fast changed the bone structure AGAIN... which really messed up the "bones ability to wiggle" to make sound.

I gave in and got a hearing aid for the left ear because I really couldn't hear much at that point out of that ear. I could still hear ok in the right one, not perfect, but ok enough to function.

At age 29 I had my second child. Same story - 93lbs before, gained 56 this time, lost it in 3 months...and lost the hearing in the right ear in the process.

I was going to loose the hearing in both ears regardless - all the quick weight gain and loss just accelerated it about 10 years is what the doc said.

So, a hearing aid for the right ear was now a necessity. Every time I went for hearing tests, then went to get new hearing aids over the last 13 years..no one - I mean NO ONE, has ever said that it could be corrected with surgery. I asked the first 5 years of going to the ear docs and was always told "just wear hearing aids". I finally quit asking and decided that this was how life was going to be and I would just have to live with it.

If divorce is EVER a good thing, it was for me. I had to get on my own health insurance. I also got a bf. He did some research and found out in September 06 that there was indeed a surgery to fix it and I now had a health insurance company/doctors that wouldn't lie to me. It was then that I realized that it was because my insurance during all those years was Kaiser Permenante [B]HMO[/B]..and they just didn't want to pay for it and had trained their docs NOT to tell people that there was a surgery to fix it:mad:

So, here I am now at 42 years old, feeling stupid that I never checked things out on my own and I just took the doc's word about no surgery being available. I am also very excited about the future. The last 5 months have been a whirlwind of excitement/hope for me. :blob_fire
I went to a couple of specialists in Dallas, went through many many hearing tests, etc. and decided to get it done, the left one first because its 90db. I'm on the road to recovery on the left ear and already excited about having the right one done. The right ear is 60db.

I'm really excited about joining the world again because I had really withdrawn from everyone the past few years. I avoided social functions of all types because I knew it would be more of a hassle than anything to even try to have conversation and I would only get bummed/upset/depressed, whatever you want to call it, if I did go. I haven't watched TV in almost 2 years because it just frustrates me. Again, my bf finally got me hooked on the "captioning" on the tv so I wouldn't get frustrated and i've been able to watch movies reading the words the last few months. He has been such a blessing to me.

Now for current stuff.
A little pain in the ear today but nothing unbearable. The "heartbeat or pulse" sound rattling my head yesterday lasted about 7 hours and thankfully has not started again yet today. Still no taste issues. I did get really dizzy this morning getting out of bed and almost fell but I caught myself. It was so good yesterday not being dizzy all day that I forgot to be careful. I won't make that same mistake again. I'm hearing a little out of the ear but it's still really muffled sounding. Packing is still in there and the cotton ball too. Ear is still draining but not too much.

Yes, I was given the same restrictions that Andy was given. No flying, elevators, lifting, nose blowing, sneezing or anything else that creates "internal pressure" on the ears for 3 months. No water in the ear for a month. My doc even said that it's possible to do the right ear as early as March. We'll see. I've read stories where some people still have side effects for up to 6 months. When all mine are gone...we'll start over again.

Andy - just spend lots of time laying on the ground rolling around and playing with your wonderful son. The months will pass quick enough and you will be able to toss him in the air before you know it - and be able to hear him giggle!

I will ask you both tell everyone you know that wears hearing aids that there are different surgeries available. They may choose not to go that route, but make sure they know it's an option. I just wish someone, anyone would have told me years ago. There is a lady at my work in the same situation - for 10 years - and no one had told her either. She goes in Feb to my doc to start the process.

I'm so happy that however you both found out about the surgery possibility that at least you DID find out.

Dwalt - is your hearing loss a recent thing or an issue you have dealt with for years also? Andy has been dealing with it for 6 years, I'm going on 24 years.

I know i'm prolly make my posts too long, but i'm just so excited about many things these days that I want to tell the world. I feel like i've been given a second chance at a near normal life and my children will no longer feel like they have to speak for me, be embarrased for me or explain that I can't hear every time we go somewhere. The burden will be lifted off their shoulders.:)

More later,

-Carol-
Carol,
The fact that your doctor did not tell you of the surgery option makes me angry. Your doctor should have at least mentioned that the option exists - especially since you asked for other options. The insurance may have chosen to refuse to cover it, but at least you should have been informed of it. That's a pretty poor doctor in my book, and it may be a case for malpractice.

Your hearing loss was much worse than mine. Although there is some mild loss in my left ear at certain frequencies possibly due to listening to very loud music when I was younger, my right ear hearing loss is hereditary according to doctors.

I can only imagine how difficult your situation must have been like when you felt you had to avoid doing things due to frustration.
I am very happy for you, and it sounds like you have a great bf.

As far as restrictions, I was not told to avoid elevators, or at least I don't remember. That would be a tough one if I worked in a high rise.
The only other limitation that I forgot to mention from my previous post was that I can never go scuba diving. I'm sure that goes the same for both of you.
One of the reasons I held off on the surgery was because I thought I might want to try this some day. Well, I have so many interests, and I realized that scuba diving just doesn't appeal to me, and I would rather have my hearing back without the use of hearing aids.
I think I'm more of the type that likes lying on the beach and watching the waves, rather than being under them :cool:

Now, like dwalt, I am just hoping for improvments in clarity, and a reduction of ringing over the next few months.

Andy
Hi all!

OK - yesterday was my first day back at work. The first 30 minutes or so drove me nuts, then I got used to the noise and was ok after that. I did get completely worn out and crashed hard when I got home. My ear "shut" around 6pm and didn't open back up until this morning. I don't know if I was just so tired that my body shut down or what. I was worried, of course, but I knew it was just a "bump in the road" and it would open back up when it felt like it.

Noeli,

Hi, welcome to the Healthboards!

I think the variation in the reports from some people hearing a lot immediately and some not is the degree of hearing loss they had before the surgery. In my case I was 90db. In other words, I was deaf in that ear and heard nothing before, so now I am hearing even though I still have packing, swelling, and lots of healing time left. Remember, I had no where to go but UP. My ear still "opens" and "shuts" when it feels like it. Sometimes I can hear and sometimes not, but the "opens" are getting more frequent.

I agree with Andy and Dwalt - It does take 4 weeks to 6 months for hearing to completely stabilize. My doc told me that and I have ready many posts that support that time frame. Some from people back in 2002 forward that were wonderful and kept posting for about a year on their progress. It was around the 5 month mark for most of them to say things finally leveled off and changes stopped occuring. Here is the link if you would like to check out the older posts.

[url]http://www.healthboards.com/boards/showthread.php?t=58124[/url]

It's great reading, there are 37 pages of posts and yes, I read the entire thing. Zip2play was the cheerleader of the group and keep talking about all the "bumps" in the road of recovery. (The story of the sizzling hot dogs is also in there).

What was your hearing in that ear before your surgery? Were they trying to close the gap by 10% (in which case you will not see much difference very soon) or were they trying for 90% like in my case (so any little change was very drastic)?

Please keep us posted of your progress and I wish you well. Like your doc said - please do not get worried. It's waaaaaay to soon for that.


Dwalt - It's good to hear from you. I have been wondering if your hearing was still steadily improving. I hope your hearing test goes well and that the ringing does go away.

Andy - It's good to hear that your hearing is also still improving daily. Do you have any ringing or any other crazy things going on in the ear anymore? I also want to say a special thanks to you for your "cheering" me and others on to the "hearing world". That was very sweet and made me laugh.

Rah, Rah, Rah - let none of us get discouraged!

More later,

-Carol-
Hi everyone,

First of all, boy am I glad I found this board after days of googling!!! I'm 23 years old and have suffered hearing loss in both ears since I was 19. The loss was so gradual that I finally noticed its impact when I realised I couldn't catch clearly what my lecturer was saying in class. I can no longer hear someone if he/she doesn't face me when speaking and most of friends pointed out that my speaking voice is getting softer. I got really depressed (esp when people look at you funny when you answer their questions wrongly or when you keep asking them to repeat what they're saying) and this started to affect my self-esteem. It was then that my family encouraged me to seek medical advice.

Last month, I visited an ENT specialist and he told me that I have moderate hearing loss equally in both ears and from the pattern of my loss, he confirmed I have ostosclerosis. After crying buckets over this revelation :D , I heeded my doc's strong advice and underwent the stapedectomy procedure last Mon (Jan 29th) on my right ear.

-----

I went through the surgery under general anaesthesia and woke up feeling like crap! I had moderate pain but was extremely dizzy and nausea (esp when I tried to turn my head) and and the right part of my tongue felt numb. For the first three days, I was dizzy from the pain meds and I can't talk well (my jaw feels tight) and I can't chew my food w/o feeling discomfort in my ear. Finally on the fourth day, I woke up in the morning with no ear pain and dizziness. Yay!

However one problem that I have is my constant burping and belching since the op. Each time I burp, I can feel something moving in my ear (no pain) but it feels pretty scary. I'm scared my eardrum or the piston will move!

Today is the 8th day after op. I just had an appointment with my doc today and he told me everything looks fine. Pfft, I didn't get to ask him my burping problem since he was so fast! :-(

So far, I can't really hear much with my operated ear (right ear). If I close my left ear, I can only hear the radio or tv when the volume is turned up really high and it has this weird muffled echo and hollow sound. Yikes! Doc told me the packing would be removed next wk and I really hope my right ear will not worsen!

So that's it. So far I'm only on my sinus medication, braving the crackling, ringing and sometimes the sound of my heartbeat in my operated ear. In the mean time, I'm really glad I've found other people in this board who've had similar experiences as mine. At least I won't drive myself crazy over all this worrying alone. Hehe... Goodday everyone!

Jazz
I am a 42 year old female. I was diagnosed with otosclerosis in both ears last November. I went to have my hearing checked since it was becoming harder to hear certain voices in conversation.

I had my first stapedectomy yesterday morning on my left ear. Post Op - a lot of spinning and nausea. :dizzy: It subsided as the day went on. 3 prescriptions - one for nausea/dizziness, Tylenol with Codeine for pain and an antibiotic ear drop to start in 10 days. I didn't use the Tylenol w/ codeine since the pain wasn't that severe. Also, I took the nausea meds today as a precaution. A little oozing of the ear overnight, so I replaced the cotton that the doc had placed. Last night I used my cell phone and noticed tones/sounds that it makes during dialing that I had never heard before! That was the best!:D
I feel great today. A little light headed and slight ear oozing. Also, a sore throat from the breathing tube used in surgery and a loss of taste and sensation on the left side of my tongue and my ear feels like its packed. (no outer ear incision as others have had) Ordinary things sound really, really loud! But a small price to pay to be on my way to hearing normally again.
So far, I can't wait to get the right one done!
Today is Thursday and my surgery was Monday. Today is good. Much better than expected. No set backs so far. Still have: loss of most taste sensation on left side of tongue, fullness and throbbing sound in operated ear, slight tipsy feeling if I move my head too fast. Not sleeping great since I keep waking up to keep off of the operated ear. That's about it.
I drove today . . . to me, much easier than walking! Keep in mind, I am not taking any prescriptions so I don't have any chemical impairments. My approach to healing has been that I have to get back in the swing of as many normal activities as possible for my body to adjust to the equilibrium issues. I am not in any severe pain, or suffering from any nausea. I take my daily multiple vitamin and an Olive Leaf supplement, maybe an extra strength Tylenol if the throbbing pain gets bad at night.
I do notice that some postings have had horrible nausea and/or pain issues for weeks. I hope things get better for you. I consider myself fortunate. If the taste never returns completely on the left side, I still can't complain. Hearing is a more important sense for me.
I do have help - my husband says he'll wash my hair for me :) . I wish I had short hair for the time being, which would make it much easier.

I read through all the posts and really do appreciate the time people took to write down their experiences. My own story is not far off - started losing my hearing in my right ear about 6 years ago. I didn't notice it until one day I switched the phone from my right ear to my left - utterly shocked at the difference. I had thought my phones were defective and bought one with volume controls!

At the time, I asked my doctor for a hearing test and they did some basic test and didn't do a thing. It took another year for me to go to an ENT and at the time I still had a decent amount of hearing in the ear. They mentioned surgery, but the hearing loss was more of an inconvenience at the time and surgery seemed to radical (this in hindsight only).

Since then the hearing deteriorated until I was considered deaf in the ear(don't know the db) and surgery finally seemed like the answer. Also, I had never had tinnitus, but late in the fall the ringing started and then the whooshing and heart beat sounds - they continued non-stop until the surgery two days ago and seem to be letting up, though I'm aware I may just be "overhearing" for the sounds and it could be temporary. I'm keeping my fingers crossed the ringing will disappear. I could handle the hearing loss much better than the tinnitus.

So, now two days after surgery - still dizzy, though getting used to walking the boat (as that is how it feels) and no taste issues...yet. I do get the occasional loud and annoying noise, plus a lot of vibrations. Did anyone else feel like their head was vibrating all the time? I had to shut my heater off today because the vibration was driving me crazy.

More later on my progress..

-Monica
Hello all!

I thought I would give my report, as everyone else's has been very helpful.

I had a stapedectomy on my right ear on 2/28/07, I am now 18 days post-op.

I had a hard time deciding weather or not to do the surgery, because my situation seems different from the norm. I first had "noticed" hearing loss in my ear around age 10. We had hearing tests at school, and they notified my parents about the outcome. I went to the doctor and they said when I was older I could have surgery and we left it at that. Throughout my life the only time it affected me was if someone tried to whisper in that ear, and I could not put the phone to my ear.
In the last several years, it has bothered me more because at work if I had the phone to my left ear, and someone in the office was trying to get my attention, I could not hear them. So, when I went to the doctor, he said that it was unusual to have it that early, but from what he could tell is that it was otosclerosis.

So, I decided to have the surgery. He gave me the option of local or general anethesia. He said he prefered to do local, because I would be able to tell him if I was feeling dizzy or had any nausea. I am the biggest chicken when it comes to all of this, so I made a deal with him. I said I would do local, as long as if I started freaking out, he would put me under! Let me tell you, I am so glad I did local....I did really well.

The surgery actually took longer as my facial nerve was over the bone, so he had to be extra careful, but all went well and I was on my way home within 1/2 hour after surgery! I had no dizziness or nausea. I actually felt really well!

Day 2 and 3 I did have a little dizziness and I tired pretty easy but that was it. I had it done on a Wednesday and went back to work on Monday, but only stayed a couple hours. Then went back full-time on Tuesday.

At my post-op visit, I was so scared, because I read the report about getting the packing out...however, I was fortunate enough to have a Doctor that does a gel antibiotic packing that does not have to be removed!!!

Anyway, here is where I am now. For the last week, I sound like I have a cold because of the fluid. I can hear myself breathe and talk out of my ear, which is annoying, but the Doc says it will go away (at night when I lay down it does go away...now just waiting for the day time.)
It is funny how I have read the other posts and sooo relate. The first time I drove my SUV, I thought there was something wrong as it was so loud and the same with the toilet...again....LOUD!! My boyfriend is adjusting as I am always telling him...Quit talking so LOUD!! Again, the Doc said it just takes time to adjust. Anybody out there have an approximate timeline for when it does ??

Anyway, hope this helps anyone with any questions they may have. I am fortunate enought to only have otosclorsis in 1 ear, but I would definately do it all over again.

Good luck !!
Hi Everyone!

I'm back home from my surgery yesterday and still a bit loopy, so please excuse any typos!

I got there about 9 AM, was prepped and ready by 10 and surgery started about 10:45. They gave me drugs to relax me before putting me out. I have a clear memory of being wheeled into the OR, then asking if people fart when they're under (LMAO!). I remember seeing the guys in front of me giggling and the people behind me laughing. That's all I remember though. I'll have to find out if I really asked that or if it was a dream.

Next I remember a nurse telling me to wake up but to hold still (apparantly I was moving my head from side to side in an attempt to come to). I just wanted to stay asleep! Then I noticed immediately how much my ear hurt! It felt like someone had been jamming an ice pick in it. So they gave me some painkillers and that helped. My ear is no longer hurting (and I'm pretty sure those pain killers are out of my system for now). My throat hurts like I have bronchitis (from the tube) and the outside of my toungue is numb. yesterday I thought it was from the local anesthetic that was used where I have stitches but today, my tongue is till numb. Small price to pay though!

I think this may have worked but only time will tell. While i was laying in my private room (i had to stay overnight) I could hear papers being shuffled and footsteps. I thought they were in my room at the table by my side but when I looked for the sound, it was out in the nurses station! So I think I was hearing! I'm not having that now but I beleive I'm all full of fluid and gunk (the cotton ball on the outside was soaked through with blood and had to be changed), plus the packing and my tinnitus is now out of control. It's pretty loud (keeping me from sleeping). So, time will tell.

One thing I really struggled with was peeing! I just could not pee no matter how bad I had to go. My doctor was wanting me to stay laying down and they were trying with a bed pan. It just wasn't happening that way! I thought it was all in my head but they finally agreed that I could try the toilet but they wheeled my bed to the bathroom and had people on both sides of me walk me in there (not a fun experience for a modest person!). They left the water running, left me alone (but I had to keep my head tilted up) and I stayed there for 20 minutes trying. I prayed, I meditaded, I tried my best to relax. I got a few trickles at best. It was the most bizarre thing, my body wanted to go, I wanted to go but it just wasn't working. So I had that experience a few more times (one again last night and once again this morning) then I was discharged. I just did a quick googl search and apparantly an inability to urinate can be a side affect to general anesthesia. NOT A fun one! I'm getting my other ear done in about 4 more months...I think that time I will insist on a catheter (but not until I'm out).

I haven't experienced any nausea but I was being given medicatin intravenously before I even came to. I have experienced some mild dizziness since I've been home but nothing I can't handle.

I'm on antibiotics, antihistamines (i have bad seasonal allergies), stool softeners, anti nausea meds. I have tylenol here but I haven't taken it. I will take the tylenol pm tonight so that I can sleep through this stinking tinnitus. Hey, were your ears bruised?? They must have really had to ram that equipment in, because aside from the tiny stitches/swelling where they took the graft from, my ear is bruised.

All in all I was pleased with the staff.

My dr. is paranoide about the graft taking and wont let me sit up (i'm breaking the rules right now). Last night I was admonished for sitting up in bed (my back was aching).

Seems like your doctors have been more lenient??!

Even though my tinnitus is louder, I already had it. I can only go up from here, right?? I have a 70 db loss in both ears.
Hi everyone. I had my stapedectomy a week ago (friday march 16th). Believe it or not, this is my fourth operation. And I have to say, I wish something like this forum had existed when I went through this the first time in 1990 (or even before my recent operation). It's wonderful that this forum exists. I read back to all of the older closed threads on this topic and I want to thank everyone for the work they've done here!!

Unlike many of you, my hearing loss is not related to osteoporosis, but to a bicycle accident I had as a child (it fractured my stapes). So, my hearing loss in my left ear was pretty total (but all conductive). The first operation I had was in 1990, which was before the lasers (I was awake for the operation and as many of you have pointed out, it was just awful). They put in a high tech superglue to adhere the stapes and it worked great. I could hear again. However, something slipped (the glue) and my hearing went from 100% to 80%. The doctor decided to open me up again, but instead of putting in more glue, he took out the stapes !!! Why? oh Why? Jerk, and put in a prosthetic, which didn't hold. This was 1991. I then had a third operation, 1992, with another physician, and he put in another prosthetic and it also blew out -- this time about two weeks after surgery (a bus was going by and it got really loud and then . . . nothing).

I was not looking forward to this operation, assuming, incorrectly, that nothing could be done (I thought maybe the last one broke something). I had the surgery last week and I was put completely under (I prefer this now and will never go back to being awake). It took about an hour and a half. There was some recovery time afterwards and I went home that night a few hours after surgery. I had the same symptoms most of you have had: nausea, tiredness, loud sounds (everything is loud to me because I am used to hearing nothing out of that ear), blood (seems to have slowed in recent days), some of the sound of your heartbeat stuff, but not very much. Mostly I am just taking it easy and have been very low key. I went back to work Tuesday of this week and it has been slow. I am also worried getting groceries and carrying my computer/book bags. I don't want to lift too much. Mostly just taking it easy and slowly coming back. BTW: I did not get most of your extensive post-op instructions (I think my dr. thought I just knew all of this because I had been through it before, but all I got was no water in the ear, no strenuous activity for 2 weeks, return to normal acitivity in 24 hours). I asked and the doctor said the prosthetic from 1992 (the last operation I had) was simply in the wrong place and wasn't helping me. He also said he, my current physician, removed another bone that wasn't helping me. It sounded like there are two prostheses in there now.

I don't go back to the doctor until a week from Monday. Looking forward to hearing what he has to say. Having been through this before, some of it (the experience) is coming back to me in memories, and some of it I am having to get from you guys on here. I am TERRIFIED I will do something and it will break (again) and I won't be able to hear again. There's nothing worse than suddenly being able to hear and then suddenly not being able to hear. But reading all of your reports and such . . . I really want to believe that this is going to work. I'm trying not to get my hopes up, but it's hard not to.

Well, just wanted to say hi and tell you my story. I'll check back and post updates when I know something. -- Rob
Hi There!

I do get a vibrating feelig around loud noises (and I still have packing!)..I would characterize it more in my forehead...not really in my ear. Maybe I'm just weird!

I bet you'll be fine!

Here's my update. (today is post op 13 for me).

On friday (post op day 9) I went for my post op appt. He tried to remove the packing but it's really stuck in there (man that vaccuum is LOUD!). He was only able to get about half out and didn't want to force it and risk damaging the ear drum. So he left it in and sent me home with some ear drops to use for a week. I got back this friday (which will be post op 16) and he'll try to remove the rest.

He did the tuning fork and I was hearing everything that he did with the tuning fork on my operated ear but couldn't hear it in my unoperated ear ( i have a 65db loss in my unoperated ear still so I'll be getting surgery in that one as well). I took that as a great sign! I even still have packing in! :blob_fire

I can sort of hear out of my operated ear but it's muffled. I attribute that to the packing. I have been able to use it to use the phone though but I just have to focus on hearing, it doesn't come as easily as if I use my unoperated ear. I am back to normal activity now. driving, back to my old self (which is sooooo great!). My husband is thankful too...he's learned to appreciate all I do...he he.

I have no more dizziness/buzziness or leaning feelings. My tongue is still being funky. Feels almost numb most of the time but when I eat something salty, it tastes super sweet on that side. I did have one night where my teeth on that side felt/tasted extremely metalic and I was having an overabundance of saliva. that actually kept me from a good night's sleep. Hasn't happened since though.

As far as my ear goes, other than everything sounding muffled, it's popping a lot. The heartbeat tinnitus is there but very quiet (quieter than pre op). I have to think about it to hear it. I do still have the high pitch sound but I think once the packing is out I'll notice that less too.

Saturday was one of my daughter's birthday. I have a large family so there were about 20 people here (in addition to our 7). I was utterly exhausted after about an hour. Mentally exhausted. It's almost like I'm not used to hearing so much sound (albeit muffled) and my brain gets tired...anyone else experience that?

So that's all for me for now. I'll post again after my appt on friday.
Hello to all:

I have been away for 6-8 weeks now but just wanted to give you all a couple of updates. My surgery was Dec. 18th so I am now about 4 months removed from surgery. I am a 56 year old male. My operated ear, right, had definite hearing loss but my left ear is fine. Before surgery, I had tinnitus in my right ear along with the hearing loss.

Surgery went well and I went thru many of the same things each of you experienced. Packing was removed at about 9 days and that was such a great feeling. Hearing has continued to improve... tinnitus is still with me, but not as bad as before.

I definitely had the sweet taste starting about 3-5 weeks after surgery. At this point, it is almost gone. (How yucky to be eating salty popcorn and get a sweet taste as a reward!)...

I recently had a very bad sinus infection and took amox as an antibiotic. I believe my ear had alot of fluid in it at that time. The infection is all gone now but I still have times when my ear opens and closes.

My doctor told me that the healing process would take up to 6 months. At this point I am about 2/3 of the way there. My right ear hears very nicely most of the time now but still with some opening and closing.

I am not sure if this brief account helps any of you to see that there are better hearing days ahead for you. I hope so. I'll post again since so many of you are walking the same path I am now on.

Dwalt
Hey everyone! I go for my stapedectomy on Wednesday. I am really scared because I have never had any surgery before, even oral surgery.

Here's my story. I am 27 years old. I started noticing my hearing loss about three years ago. Like all other problems I have I just sucked it up and dealth with it, all the while complaining about it. I first noticed the hearing loss when I was on the phone. I switched from my right ear (referred to now as my "good ear") to my left ear and the volume decreased significantly. I asked whoever I was talking to if they did something with the phone and they hadn't. Then I started to notice while watching TV, or talking on the phone. My boyfriend (now my husband) would get so mad at me when I asked him to repeat things because I didn't hear them. He would say things like, "If you have a hearing problem, do something about it or adjust."

So about a year ago I did something about it. I made an appointment at a hearing clinic and the result was that there was definitely hearing loss, but she could not tell why. She referred me to an ENT doctor, who redid some of the tests and confirmed that he was pretty sure that it was otosclerosis. But he was about 90 years old and no longer does the surgery, so I was referred to ANOTHER doctor where they went through the options and drawbacks with me. They wanted to make sure I was choosing the surgery for reasons other than financial (they are covered by provincial government here, hearing aids are not), but once they were sure, they told me I would be contacted in a few months about a surgery date.

And so here I am. Scared whitless! After reading all that you have posted about side effects, I am really worried. I am a substitute teacher and was really hoping that I would only be off for a week, as I don't get paid if I am not working. No benefits for a sub!

I will keep you posted on my side effects, but I have some questions for everyone out there.

First, were you able to do things that first day, like read or watch movies or anything? I am not the type to sit in bed all day.

Also, I am really concerned about the dizziness. How long for each of you to recover from that?

Has anyone had to have their surgery redone?
I had my right ear "fixed" about 15 years ago. At that time the prosthesis used was of a ferrous material which means I cannot have an MRI. As is normally the case, the worst ear was the first in line for surgery. I was evaluated two years later for the same surgery on the left ear. My ENT said I had too much neurosensory loss in what HAD been my "good ear" to warrant the surgery. I have been funtional w/o hearing aids since, but functioning below normal and with volume up to an uncomfortable level for my family. As I approached 65 I decided it was time to be reevaluated. I had the left ear operated on May 30. I had my first post-op visit today. The surgery was "successful" and the healing is progressing nicely. That said, I cannot and do not expect the same level of hearing as in the right ear. Also, I had to have the ear canal "siphoned" gently to remove some "ichy" stuff that had accumulated. Mildly worried about infection, the doctor ordered ear drops to be used twice daily and an oral antibiotic. There are risks in having the surgery. Weigh them carefully. I not only had it done, I had it done twice....years apart. The methods used today are different. The new prosthesis is of non-ferrous metal. I had three small stitches to close a small incision above my ear this time. No incision last time. Taste is messed up but I can still identify the foods that I am eating. Imagine how your tongue feels after eating very cold ice cream. That is kind of what it is like. In addition, my mouth is dry. I had a bit of light headedness yesterday but not enough to make me nauseated. I have only vomited twice, the first day and the second day. The most difficult part of recovery is just taking it easy. I want to work in my garden, pick up my grandkids, etc. I don't mind that the vacuum cleaner is too heavy for me to pick up!
I had a stapedectomy on my left ear nearly 3 months ago.

Overall things went well - my air/bone conduction gap (the difference in hearing between listening with headphones and hearing with bone conduction) has been pretty much closed in the operated ear. I have a mixed loss – the otosclerosis (hardening/fusing of the bones) seems to have been cured but the sensaurial loss is, as expected, still there.

My hearing is much better in the operated ear. My loss has gone down from around 50db to about 20-30db. I can now get by without a hearing aid in the operated ear – which was my main hope. I can also get by without a hearing aid in either ear which is really useful in those situations where I may not be wearing a hearing aid e.g. by the pool or in bed.

I have moderate tinnitus and that has not been changed by the operation.

One thing that strikes me reading this forum is the range of experiences that people have of this operation. I wonder how much of this is down to the different procedures used by different doctors around the world. (I am in England.) I also wonder how much the experience of the doctor makes – the surgeon that did my op had done around 250 stapedectomy ops but not all surgeons are going that experienced. Some will have done many more than that.

For me the operation was done under general anaesthetic using a laser to remove the affected bones.

The prosthesis that replaced the bones in the ear was made out of titanium. I had heard that some surgeons still use stainless steel! Putting anything that is sensitive to magnets in your head seems like a very bad idea to me e.g. you could then not have an MRI scan.

I stayed in the hospital one night after the operation and then went home the following morning. Generally I felt OK but tired for a few days after the operation. I did not feel any pain so I took no painkillers. I was not given any antibiotic drops.

In the hospital I went to they also have surgeons doing the operation under a local anaesthetic. The idea of using a local anesthetic is so they can test the hearing of the operated ear while the operation is in progress so that they can check it is working before closing up!

I had no dizziness after the op and according to my surgeon I should not have expected any. (This seems to contrast with some peoples experience on these boards.) When I asked about avoiding any pressure changes, e.g. flying, sneezing, he said that the operated was just as strong as a normal ear so I didn’t need to worry about these.

About 5 days after the op I started to get really dizzy and started to feel motion sick. I went and saw the surgeon and he took the packing out of my ear. This was a few days earlier than would normally be the case. He suggested that the pressure of the packing as it swelled with blood and pressed up against the eardrum was the cause of the dizziness. The dizziness subsided within a few hours of the packing being removed but it took about 2 weeks for my balance to return to anything near normal.

Even now, nearly 3 months later my balance hasn’t entirely returned to normal. Generally it is OK but sometimes I get a distinct feeling that the world is moving even when I can see that it is not. Also if my ear pops it can feel like the world suddenly tilts and then goes back to normal. My general feeling though is that my balance is continuing to get better but it is a slow process. My tightrope walking dreams will probably have to be put on hold :-)

Once the packing was removed everything sounded incredibly loud (traffic/trains were painfully loud) and also very flat. Over the next couple of weeks I adjusted to my new hearing. The world started to sound less overpoweringly loud and much more normal, i.e. less flat. Now I can get by without a hearing aid but because of my high frequency loss I sometime use my hearing aid when watching TV. (I had my hearing aid reprogrammed once I had had my hearing test after the op.)

Good luck to everyone else who has had or is considering this operation,

Gary
[QUOTE=kadida1;3143351]I just wanted to keep this topic going


Teresea[/QUOTE]

[SIZE="3"][FONT="Lucida Console"]It is good to keep the topic going. I too like to read what other patients are experiencing. My second surgery was 5/30 of this year. My packing was completely gone/dissolved by the time I went for my 2nd post op. My binaural hearing is much better not only because the hearing in my left ear is better, but also because I can hear from both sides of my head. This gives me the ability to discern direction sounds come from but also allows me to hear more natural sounds since my left and right ears don't have the same frequency hearing range. When I sing, my tone seems more normal. Taste has not returned to normal but it is not awful. I love food and beverages with lots of flavor. I am hoping to return to being able to fully enjoy them again. Note: losing a little in the taste department is an acceptable trade off if it never returns to normal. I wish that all types of hearing loss could be restored by surgery like this and empathize with those who would not benefit or who chose the surgery and found it less successful[/FONT][/SIZE]
Hi All!!

I am new to posting here, but I have been reading this forum for a week. I do have some questions for the veterans.

Background first: I starting losing hearing in my left ear around 12 years ago. About 7 years ago I went to an ENT and I was told nothing could be done. I went to an ENT, again, about 6 weeks ago. At that time they told me I had maximum conductive hearing loss in the left ear and I needed a CT scan to see what was causing it. The result of my scan showed Otosclerosis, bilaterally, although my hearing in the right ear is near normal. I had a Stapedectomy on July 31st. I am on the 14th day post-op. I never really had any vertigo after the day of the surgery, but my tongue has been numb since, but it sounds like taste should come back but it will be awhile.

I can hear from the operated ear, but it is not as loud as the un-operated ear. Load sounds are painful, but that seems to be getting better. But I am still missing some sounds my other ear can hear quite clearly. Is this normal? As the weeks progress, did anyone’s hearing become better, more sensitive? I have read a lot about the popping and hearing stabilizing, but not much on sound getting louder.


Thanks. I hope everyone is doing well.

Mos
[QUOTE=mos123;3153111]Hi All!!

I am new to posting here, but I have been reading this forum for a week. I do have some questions for the veterans.

Background first: I starting losing hearing in my left ear around 12 years ago. About 7 years ago I went to an ENT and I was told nothing could be done. I went to an ENT, again, about 6 weeks ago. At that time they told me I had maximum conductive hearing loss in the left ear and I needed a CT scan to see what was causing it. The result of my scan showed Otosclerosis, bilaterally, although my hearing in the right ear is near normal. I had a Stapedectomy on July 31st. I am on the 14th day post-op. I never really had any vertigo after the day of the surgery, but my tongue has been numb since, but it sounds like taste should come back but it will be awhile.

I can hear from the operated ear, but it is not as loud as the un-operated ear. Load sounds are painful, but that seems to be getting better. But I am still missing some sounds my other ear can hear quite clearly. Is this normal? As the weeks progress, did anyone’s hearing become better, more sensitive? I have read a lot about the popping and hearing stabilizing, but not much on sound getting louder.


Thanks. I hope everyone is doing well.

Mos[/QUOTE]

Mos,

There probably is packing in your year which would stop you from hearing very low frequency sounds.I had packing in for around 10 days and after the doctor took it off I could hear sounds in more detail.
Hi all,

OK …here are the results of the latest hearing test.

The goal of the surgery is to “close the air-bone gap”, which means trying to get the “air numbers” to match up as close as possible to the “bone numbers”. Mine are a lot better than they were, but there is still room for improvement. The doc said that the hearing would continue to improve the next 3 months.

Normal hearing is anywhere between 0 and 20 decibels.


“Bone” = the best that can be expected by each frequency for ME. Most of my hearing loss is from Otosclerosis but I do also have some loss due to nerve damage and that portion of loss cannot be restored.


Hearing Test August 29th, 2007, - [B]Left ear- 6 months post op[/B]
..............dB..............dB........ ..........dB
Hz....air (Oct 2006)......air (today) .....bone
250........75...............40.......... ........15
500........85...............65.......... ........15
1000......65...............25........... .......20
2000......75...............40........... .......10
4000......50...............20........... .......15

[COLOR="Red"][B]SRT – 30 is now instead of 65[/B][/COLOR]


Hearing Test August 29th, 2007- [B]Right ear – 3 months post op[/B]
..............dB..............dB........ ..........dB
Hz....air (Oct 2006)......air (today).......bone
250........50...............20.......... .........5
500........54...............15........... ........25
1000......54...............30............ .......25
2000......40...............20….......... .......35
4000......35...............35............ .......15
[B][COLOR="red"]SRT – 20 is now instead of 45[/COLOR][/B]

SRT = Speech Recognition Threshold

Long story short - I CAN HEAR!

More later,

-Carol-
Report for Day 6:
My hearing returned last night, Day 5. Very weird, and amazing too. Suddenly I realized I was hearing in stereo. Today, as others have reported, the ear was very sensitive and everything was LOUD: the clicking of my keyboard, the ruffling of papers, the flushing of the toilet! But tonight it was wonderful to hear the subtle notes of birdsong and to talk on the phone using my left ear -- something I've been unable to do for 2 years!

Later this afternoon, my hearing acuity diminished somewhat. It was a bit disconcerting but I'd read in this forum to expect that, so I'm just going with the flow and thankful for what I do have.

My first appointment with my surgeon was today. He explained that I had a condition he'd not seen in more than 10 years of surgery. The middle bone, the incus, was severely atrophied and was the cause of my hearing loss; the stapes was fine. He removed the stapes and the diseased incus, and connected a prosthesis directly to the malleus and footplate. It'll be touch and go as to how well this works in the long run. It's possible I will lose some of the hearing I've regained. But, for the time being, I'm thrilled, and can also return to my usual level of exercise (except still no water in the ear for 3-4 wks).

I echo Tim's comment that it takes courage to go through with this procedure; it definitely does, and yes, it's worth it.

Best to all,

Marmot
Hi, all!

I learned about the possibility of a stapedectomy about a month ago and I have been excited about it. I went to my first consultation appointment yesterday. I think I will actually have the stapedotomy instead -- the stapes isn't actually removed, just bypassed. I have yet to make the appointment for the surgery. I am still trying to decide. Like others have said, the thought of intubation makes me apprehensive. For such a short surgery, it is a good trade off I guess.

Carol -- I'd love to know what doctor you went to. There can't be too many in Dallas!

The literature that I was given does point out that there are risks to the surgery. Like 1 in 150 may not have an improvement or may even lose hearing. Is that common information for everyone? I have also noticed cautions in the thread about flying and such, but I haven't gotten to that point of the consultation yet. I guess.

The thing I like most about this thread is reading the common experiences. Like being able to sleep on my good ear -- right ear -- when I want to sleep and my husband wants to watch TV. That will be an odd adjustment.

A little about me. I can remember being in first grade and failing my hearing test. My parents were simply told to watch it. I investigated a hearing aid about 5 years ago, but the doctor said my conductive hearing loss wouldn't really improve with a hearing aid, so I didn't do anything about it.

About two months ago, my allergies really started to act up and the congestion settled in my good inner ear. I went for a few days relying on the hearing in my bad left ear and it really frightened me. I couldn't hear a blooming thing!! So I called the ENT. She wasn't even bothered by the congestion, but the whole office got really excited about my hearing test results. They encouraged me to find out more about the surgery. And told me to take over the counter decongestants. (By the way, saline spray in each nostril really gets rid of the congestion without any meds for me.)

I am in my late 30s and my paternal grandmother has otosclerosis.

I'll keep you posted on my journey. I'm glad I found this thread!
Hi everyone, thanks for posting your experiences with this surgery. I was diagnosed with otosclerosis this summer, but the probelem that led me to the audiologist was the tinitus in my left ear. My hearing loss is about 70% in the low frequencies and 25% in the high frequencies, and the doctor says the tinitus may be linked.

Has anyone who has had this procedure reduced their tinitus through it? That ear, my left ear, also always feels "full" and often "itchy" if that makes any sense. Has anyone else had this problem?

I'm 27 years old, and thinking about getting the surgery. Cheers.
Hi everyone!

It has been awhile, but I thought I would check in.

Arlanthe,

I had the procedure done 10 weeks ago, and it has reduced the ringing in my ears a little. It is hard to say if it will do the same for you. For the most part, Dr.s’ hesitate to say that it will help. Sometimes it will and sometimes it won’t. I have read that some people’s ringing went away after the surgery. I think that is a coin toss.

From the amount of loss you are experiencing, you might consider the procedure seriously. Again that is a personal choice, and depends on how the loss is affecting you day to day. My hearing loss was affecting my work. It was too hard for me to hear people speak in client business meetings and I was missing key points. I need to do something.

Good luck with whatever decision you make!

My update:

As I said I am 10 weeks out from my surgery. Things are going well. The ear still opens and closes, but it is getting better. I still have times when sounds are too loud. I had my initial post-op hearing test today. The operation was a complete success. The air-bone gap is completely closed across all frequencies.

For me, having the procedure was a no brainer. I had maximum conductive loss in my left ear, so the tiny risk of a failed procedure wouldn’t set me back too far. It now hears as well as my un-operated ear. This has truly been amazing. I can again hear in stereo and can tell where sound is coming from. Music is once again a joy and I can hear my children (still torn on this one). Just kidding…;)

The Dr. wants to see me once a year to monitor my right ear. I have evidence of otosclerosis in that ear. I will drop in and see how folks are doing.

Good luck everyone!!!

I really do believe this surgery is a miracle. It has helped so many people. I want to thank Cab for starting this thread. It has helped so many people through uncertain times. I know it helped me, and if I ever need to have the other ear done I will again rely on the encouragement if offers. I will continue to post on the progress of my current procedure, until I can no longer tell I had anything done.

Cheers!

Mos
Annie,
I had my first stapedectomy in 1998, I had surgery within one year of diagnosis on my left side. My hearing on left side is still within normal range across all frequencies . Used hearing aid at that time for about a year but got tired of it.
I had my second surgery about 17 days ago. I had moderate hearing loss. I walk 4-5 miles almost daily. My only problem is mild lightheadedness when I walk about half a mile. It is getting better day by day. I have self absorbing antibiotic ointment gel placed in the ear, had some ear fullness which is much improved now, my first appointment is in mid december. I noticed improvement immediately after surgery, but it got worse on day 3, 4 and 5 due to fluid in middle ear and liquefaction of the ointment. I did have ringing, and severe fullness which are much improved now. It does get better when they remove the pack as you will be able to hear some. Initially you notice improvement in low frequencies later in high frequencies . I still have have tinnitus but It does not bother me.
Since hearing on my left side is normal small improvement has made lot of difference.
The doctor who did my surgery has done thousands of them, he did not give me an option of hearing aid.
LAXMI





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