Stapedectomy Experience (UK)
Posted , 29 users are following.
Hi everyone,
I've just had a stapedectomy in my right ear and thought I would share my experience with others who may be considering this operation. I'll try and update this every couple of days, but feel free to ask any questions you might have in the meantime. I've really benefitted from reading people's first hand accounts in the lead up to this op so this is my opportunity to try and give something back to this niche stapedectomy community ;-).
Background to Stapedectomy: Since Dec 2016 I started to notice that I was losing hearing in my right ear. At first it was only minor (20% loss) but by early 2018 I was classified as severly deaf in that ear at around 85-90% loss. The severe hearing loss had a big impact on my social life, my ability to carry out simple tasks (i.e. riding my bike) as well as my work (meetings became a struggle). All of this coincided with a 10 year relationship break up in 2017, which when combined with my hearing problems, made me the social equiavalent of Gollum from Lord of the Rings. Something had to be done...
Getting Diagnosed: Getting the diagnosis for Otosclerosis in my right ear took a bit of time. Initially I thought it was wax build up and went to see a Dr in Romania while visiting my then girlfriends parents. They couldn't find any wax and recommended an MRI to check it wasn't anything sinister. Returning to the UK I got an appointment with the ENT department who undertook a series of checks and concluded I had Eustachian Tube Dysfunction. Cue several months of steam baths, decongestants, anti-hystamines none of which were effective in improving my hearing. I also had a CT scan which confirmed that there were no tumours present (these tumours are often harmless even if found). Returning to ENT after 6 months ready to demand grommets for my ears I was put through a hearing test again. This confirmed I was now severly deaf in my right ear, but also that my Eustachian Tubes were functioning normally. Hmmm? What had happened?
It turns out that the machine that they would have used to check the pressure in my middle ear canal wasn't working during my original appointment and therefore they were unable to discount ETD. Annoying.
My crude understanding of how they diagnosed my Otosclerosis is as follows. Ear drum was working fine, my auditory nerve was picking up sound fine (checked through bone conductivity tests if I remember correct) and my middle ear pressure was also good. By process of elimination they were pretty sure it was my a mechanical problem with my 3 ear bones, in particular the stapes.
Why did I opt for the Op? At the time I was given the option of hearing aids (hmm); a Bone anchored hearing aid (i.e. a hearing aid implanted into your skull) or a Stapedectomy. My personal reasons for going for the op were 1. my hearing was so bad in the affected ear that I felt the risk of losing my hearing totally through the op would not have resulted in a much worse situation to the one I was already in. 2. The success rate was for the op appeared to be good and could be undertaken as a day case 3. The op offered the potential to hear completely normally again. The other two options would have provided more artificial hearing benefits. 4. Probably an element of vanity about not wanting to wear hearing aids of have an implant
Day of the op: So I was quite nervous about the prospect of a general anaesthetic (GA). I woke up on the day of my surgery Tues 8th and had to skip my coffee and breakfast as per the rules. The order of play went a bit like this....
1. Seen by nurse who checked vitals
2. Seen by anaesthesist
3. Seen by surgeon
4. Dress in funny clothes and excellent socks
5. Go into the operating theatre, have a small freak out about how many people are there just for you, get a mask over your face and then passing out.
In all seriousness I am a fairly anxious person, but the NHS staff were amazing and knowing what was coming each step of the way really helped quash any mystery about the process. Essentially GA is extremely safe unless you are a 120 year old man being rushed into A&E with half an arm and a penchant for long mid-morning snoozes.
Waking up and Day 1: The surgery took 2 hours for me, although 45-60mins is more common (i have a small ear canal apparently!). and you'll generally be put under for about 4 hours in total.
Waking up you will have a nurse checking your vitals and handing you some water to sip. Everyone has a different post GA experience (inc. hysterical laughing, crying and memory loss) but for me I was just moderately dizzy and very lethargic. I got wheeled into a recovery room for about an hour an ate everything they had on offer. The first trip to the toilet was difficult as was putting on my clothes due to being so off balance.
I was given some paracetemol and Ibuprofen for the pain (at this point there was none) as well as some cotton balls to replace periodically over the next few days. I was told my follow-up appointment would be in 2 weeks where the packing in my ear would be removed.
At this point many people talk about being able to hear straight away. I can't say this was my experience, but I largely think this is due to the packing which is fairly tight in your ear. However, I did notice that scratching my ear lobe lightly produced a much louder sound than prior to the surgery which helped to give me some piece of mind that something has worked.
Day 1 returning from surgery: Dizzy and tired. Dizzyness comes more from leaning head forward, leaning head backwards or going up and down stairs. This is a very common side effect of the surgery so I'm not worried at this point. I have to move in a more considered way but I don't think I'm at risk of falling over from this feeling of being off balance. There is some pain in the affected ear but it's not too bad. Had a big meal, watched some TV and then feel asleep on my back.
Day 2: Just as dizzy as yesterday, cotton swab has a small amount of blood on it, ear pain definitely worse and can hear my heart beat/blood rushing sensation in my ear. None of this is unbearable and I still manage to talk to my sister on Facebook and listen to Adam Buxton's podcast. It's fairly embarrassing but one piece of advice I would give is get some 'stool softners' and or laxatives. A side effect of GA and pain medicine is constipation. Combine straining with a traumatised ear op and you have a fairly tricky pain balancing act while hovering over the toilet. Heed my words!
Day 3: Bad night of sleeping waking up in pain. Think I'm trying to do to much to soon. No change in hearing, but I'm really not expecting anything until the packing is out. Felling generally a bit deflated after the GA and not being able to do anything active...I am not an indoors person. Had a dizzy walked to the shops looking like a drunkard.
Day 4: slightly better sleep. Still some pain but I've only taken one ibuprofen today so it could definitely be worse. Still some minor bleeding on cotton swab. Ear continuing to make weird farting and squelching noises. I'm pretty relaxed that my ear is in recovery mode so I'm not expecting any miracles at this point. You'll read on other forums that some other people are already back to work at this point. This still feels some way off for me, but from what I've read about this procedure I can say for sure that everyone has very different recovery experience and associated timescales. Life can't be too bad as I've managed to write this post. Will update more over the coming days...
1 like, 149 replies
daniel85607 jake88
Posted
HI, AFTER WAITING AND WAITING I FINALLY HAVE MY PRE ASSESSMENT FOR MY FIRST EAR TOMORROW, ANY ADVICE AND HOW LONG DID YOU WAIT FOR THR PROCEDURE AFTER THE PRE ASSESSMENT
gaz2k1 jake88
Posted
Good to read all this, had mine done 12 days ago. Was a day case, no issues and up and about the day after. Worked from home for a few days. Packing got taken out after 6 days by surgeon and can notice my hearing has increased slight already. As the days went on got even better, still don't think its at 100% but to me 100% better than it was. Surgeon was fab, conducted around 150 of these and said only 2 have failed for him but explained why (mine conducted on NHS) Sometimes my ear feels blocked and like it needs to drain but nothing coming out, i know its still early days so assume i just need to let it heal. Some times voices and music sound lightly robotic, this comes and goes. Slightly disorienting but manageable not sure if this will pass or i just need to adjust? Don't know full change yet as have my first post op hearing test and check up end of August. I have tinnitus in this ear before the op, still have it currently at around the same level.
andrea52902 jake88
Posted
this has been a great thread thanks so much for sharing your stories! i had my Spatedectomy (left ear) 3 days ago. so far taste is fine but still feeling a bit drowzy, off balance and have the throbbing in my ear ( it got worse after i slept on my right side a few nights ago). was wondering, has/did anyone else experience a weird 'jolting' of the room when yawning or burping? its as though everything spins a bit on a vertical axis everytime i do either or even when i stretch sometimes?
thanks!
davina79217 andrea52902
Posted
Hello its was a year past in june since my op . My dizziness was quite bad fir the first 9 or do days but it did settle. i also had some inner ear pain in occasions but it was like a stabbing pain and only lasted seconds but it also died down. I had my balance test a couple weeks ago and it all went well . They said there was no issues and i shld be okay to get the other ear done so im just waiting in word from my consultant. If they asked me at the time of my last op to do the other ear id have ran a mile i hated the side effects but now i know it was worth it. Hope you have a good recovery and hope ure ear is as good as mine is now almost 100%
andrea52696 davina79217
Posted
So glad everything has gone well for you and good luck with the second op.
Unfortunately, my op has been a complete failure 😦
One year on, I have lost all hearing in the operated ear and still have unpleasant unbalance daily.
I have been for a second opinion in the last few weeks but nothing can be done to restore the hearing, I could risk having the prosthetic removed to see if my balance will improve , but there is a chance that things could become worse. So I have decided to draw a line under it and just get on with living.
On the plus side I have had cataracts removed in both eyes this year and they went really well, am now almost glasses free after having worn them for the past 50 years 😃
davina79217 jake88
Posted
thats a shame about ure hearing, but good nees on the eyes one of 2 is not bad
michelle71199 jake88
Posted
Oh no, Andrea, that's awful.
I'm still half deaf with vertigo from my stapedectomies and revision surgery. I don't have time to get a second opinion due to work and parenting commitments right now but I'm expecting this is probably it.
There is an otosclerosis community FB page which is quite helpful.
Have you tried vestibular physio exercises? Someone on the forum said that they really worked for her. I haven't had the capacity to try yet, working fulltime and looking after 2 young children or sleeping when not working.
If all else fails, I'm going to look in to a bone anchored hearing aid.
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jason042929 jake88
Posted
Hi everyone I had my operation yesterday morning. I Left the hospital and got into a taxi and headed home. MY ear started to bleed on the way home and was bleeding for approx 9 hours. I called the hospital and was told that was normal and just to put cotton wool into it. I have woken up on day 2 and yet again it has started to bleed but not as bad as day1. I have been reading through this forum and i have found it so helpful but have noticed no one has mentioned about getting a lot of bleeding so a little worried
davina79217 jason042929
Posted
Aw Jason thats awful.I never had anything like that at all. All id say id if ure concerned just keep calling them.
michelle71199 jason042929
Posted
I didn't have that from either of my ops. If you are on Facebook, there is an Otosclerrosis community closed group you could join-they have a number of professionals who can advise.
deepu04 jake88
Posted
Hello,
one year back i had my stapedectomy surgery to my left year, it was very successfully done. and now i had stapedectomy surgery for my another ear 6 days back. After surgery doctor said surgery has done well. But still i have the same hearing level. Please can anyone tell me with your experiences, the hearing level will increases or not???Hello, i had stapedectomy surgery for my another ear 6 days back. After surgery doctor said surgery has done well. But still i have the same hearing level. Please can anyone tell me with your experiences, the hearing level will increases or not???
denis23546 jake88
Posted
Hi all,
As everyone else has already said, thanks to everyone who posts here, it's such an invaluable resource.
I had my stapedectomy four weeks ago. The op seemed to go fine and the surgeon was happy enough. I certainly couldn't hear anything all through the 2 weeks that I had the packing in. When he took it out, he also said that he wouldn't have expected me to hear anything with the packing (it would have been good if he'd told me at the start). Since the packing came out, my hearing seemed to improve gradually for a week or so. I found if I put music on my phone near my ear, I could hear it, but it was very distorted, like an old transistor radio, and slightly after I hear it in my good ear--which is very weird. Then about 5 or 6 days ago, it went right back to the start and I could hear hardly anything. Very gradually, it's starting getting better again, but I have to have it quite loud to hear the music, and it's still a fraction of a second late and the pitch isn't right.
When people speak (or I speak), it's quite loud but distorted so I can't make out the words, plus it's like someone playing the kazoo loudly inside my ear (or the Clangers). This makes it difficult to concentrate on what people are saying.
I also notice that if I brush my ear with my fingers, I can hear a noise right by the ear hole (which is loud as I would expect), but there's no noise if I brush the lobe or the outside of the ear.
What's obvious from this group is that each of you have a different experience, but I'm hoping that someone might have had something similar and be able to tell me if this will get better?
My tinnitus is worse than before (one of my real hopes was that it would improve, but now sometimes it's so bad I can't sleep) and my hearing is much worse than before. Having the op just before the coronavirus lock down was obviously bad timing, the hospital is now busy with people in much worse situations than me, so no check-up or hearing test or reassurance for at least 6 months.
So at the moment I'm wishing that I'd never had the op 😦
Best wishes to you all and especially to all of you for whom it hasn't worked!