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
michelle71199 jake88
Posted
Hello,
I'm so grateful for finding this post. It gave me a lot more insight before having my stapedectomy.
I lost most of my hearing around age 31 but was dismissed for having caused it myself by spending time in loud environments (musician, gigs and clubs etc). It wasn't until I was 41 that further tests were done to diagnose otosclerosis, that was summer just gone.
I had my stapedectomy on the 22nd of December, even though booked in as a day patient, they kept me in overnight. I couldn't keep any food down nor did I have any appetite. I pretty much slept for the following 2 days but gradually started to recover.
It's now been over a month since the op and I've not experienced any improvement in my hearing or tinnitus but I am still experiencing being off balance.
At my check-up with the surgeon 3 weeks after the op, they informed me that my middle ear was inflamed so this is affecting my balance and preventing sound from entering my inner ear. I have been prescribed with some Ofloxacin ear drops (although pharmacist gave eye-drops which are okay to use, confirmed by audiologist). A hearing test this week confirmed that there had been no improvement.
Upon reading other's comments, it seems that my situation isn't common and most have healed by now. I still have hope but I would feel more in the dark about what is going on if it weren't for this post.
Thank you.
andrea52696 michelle71199
Posted
Hi Michelle your situation sounds very much like mine...sad to say my op was in October and was also not successful. I now have no hearing in my ear and am still experiencing dizziness daily. I have written to my consultant expressing my concerns but still await a reply. I know it was a gamble to have the op but having had my other ear operated on many years ago with great success I really thought this would work too.
I hope that maybe you will see some improvement over time.
michelle71199 andrea52696
Posted
I'm sorry about your experience, Andrea. What did they say at your last check-up? I am due to see my surgeon again in March. My audiologist told me that it should be rectified if it hasn't worked. From looking at reasons for failure from online searches, the prosthetic may not be correctly positioned.
https://www.utmb.edu/otoref/grnds/stapes-surgery-071121/stapes-surgery-slides-071121.pdf
andrea52696 michelle71199
Posted
Michelle. ..The consultant said that he now thinks the otersclerosis had progressed to my inner ear and if that's the case then the op would not have repaired my hearing. I think they should have determined this before they operated! Also they never mentioned that a side effect would be in balance and I am finding this very difficult to cope with. Where are you based ?
michelle71199 andrea52696
Posted
HI Andrea,
I'm sorry, I didn't get a notification of your reply. I am in London, UK. My surgery is being funded by the NHS.
I had another appointment with my surgeon on Wednesday and he was quite concerned. He is going to "go back in" to see what's going on. He suggested that perhaps the prosthetic might be too long but will have to see. He may end up removing the prosthetic altogether.
My surgeon has been performing the operation for 20 years and has only had 4 patients that it did not work for, those patients developed an infection, I think he said.
You really need to get a second opinion, I think. Why is your consultant guessing instead of actually checking the cause?!
andrea52696 michelle71199
Posted
Hi Michelle, I`m based in Yorkshire and also had my stapedectomy on the NHS. As far as I am aware my consultant has performed many operations and told me that I was his first failure! I have written to him to ask if the operation can be repeated (although, i was so ill following my op in October that I really do not relish repeating it!). He has told me that it is not possible to do the op again because of danger of facial paralysis and loss of taste ( which I already have down the left side of my tongue). After contacting him again to ask what he can do to stop the light headedness I am still experiencing he has made me a further appointment to go see him this Thursday. I will take someone with me this time to ensure I ask all the questions I have and see what the outcome is. Thanks for the link, I will try and read through this before my appointment.
michelle71199 andrea52696
Posted
Good luck with your next appointment.
I know what you mean about post op horror; I felt so regretful afterwards.
Here's another link with similar info.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2639894/
andrea52696 michelle71199
Posted
Hi Michelle. ...do you have any further updates? I have a CT scan booked for the 23rd March to try and find out what has gone wrong. I am still experiencing dizziness on a daily basis!
michelle71199 andrea52696
Posted
That's hopeful-I really hope that they can help you.
Yes, I was given a date for the operation this week. It's set for April 14th.
ehwr58164 andrea52696
Posted
Hi Andrea - I haven't been on the site in a while but was just reading through the thread as it sounds very similar to my experience. I had a laser stapedectomy done in April 2018 and while I have had some hearing improvements, I still have dizziness/light headedness on a regular basis, particularly when I move around. I've always found it a tough symptom to describe but light headedness seems the closest which seems to be what you're experiencing as well. It's become tolerable but still affects my ability to be active etc. I saw the surgeon at least 5 times since and he had no answers for me which was really frustrating and he eventually referred my to another surgeon who I am seeing this May. I did have a CT scan done which according to him revealed nothing wrong with the surgery. When I see the new doctor I will be doing some hearing and dizziness tests which I've had up to this point but no good answers. We'll see if I can get any better answers and I will be sure to pass them on. Goof luck with your CT scan - Evan
andrea52696 ehwr58164
Posted
I hope the new surgeon you see in may will will have some answers for you. It's all very frustrating and as you say it's so hard to explain how you feel....I can be knocked off balance at any time which is worrying especially as I look after my young grand daughters.
I will see if my CT scan reveals anything but I don't hold out much hope .
michelle71199 andrea52696
Posted
Hi Andrea,
What did you find out from your CT scan?
I had my revision surgery on Saturday just gone and it was a very different experience. No nausea this time and I was discharged a few hours after surgery; they must have given me far too much anesthetic last time (I slept and barely ate for 3 days).
I still have the same issues with my balance but I hope this is temporary. I think I can hear a little. I had a small skin graft from my left forearm. I will have stitches taken out tomorrow and see my surgeon for a check-up next week.
andrea52696 michelle71199
Posted
Hi Michelle, how are things with you after your repeat surgery, has the problem been rectified?
I saw my surgeon for results of my CT scan, but not good news.
He says that I now have what he describes as a
dead left ear, that the scan shows a medialized stapes prosthesis with a fluid containing vestibule and inner ear. The scan shows that the prosthesis has protruded into the inner ear which explains my symptoms of in balance and no hearing. What he doesnt say in the letter (which he did say when I asked him why the prosthesis had penetrated my inner ear) is that it is too long. He went on to say that my options are to consider having the prosthesis removed and to plug the stapes foot plate, or basically do nothing and he is certain I will see improvement in time. He said a further operation may potentially make the balance worse and there is little chance that my hearing can be improved. Basically, the op has failed , through whos fault...I dont know? But who`s responsibility is it to measure the prosthesis and get it right??Anyway, I have a doctors appointment to discuss this and I intend to ask for a second opinion.
I hope your outcome is much better.
michelle71199 andrea52696
Posted
Hi Andrea,
Gosh, that's bad news. I think it sounds like they did a bad job and now you have a difficult decision to make.
My report is also not great. My hearing is worse than before my stapedectomy and I still have vertigo. My surgeon doesn't know why I reacted so badly to the operation ie the excessive inflammation pushing the prostetic out of place. Although I had a small amount of hearing at my hearing test a couple of weeks ago, I think it's gone again. My surgeon doesn't know either what's causing my vertigo and suggested it may be some fluid leaking. He said he could inject me with some steroids to fix my balance but this would mean he would have to remove my hearing...but before we discussed my vertigo, which I don't think he was really acknowledging before, he he was talking about a prosthetic with a swivel in it. To be honest, I find him him difficult to understand and I have asked for a 2nd opinion/referral. I do not want my surgeon to do anything else to me. I have been told that I have to use my private medical insurance though (I have this through my work but I don't know how it works). I wish I had a copy of the waiver accepting the risks from having the stepedectomy. I was prepared to maybe lose my hearing but not be left in this state. The person I have asked to be referred to specialises in stapedectomies, vertigo and tinnitus so I will trust whatever he has to say.
I would recommend people undergoing a stapedectomy to have someone who specialises in the procedure rather than someone who does it occasionally.
I cannot mask my tinnitus with my hearing aid on my operated ear because I cannot hear...what bad luck we have had.
stuart31580 andrea52696
Posted
Hi Andrea. Sorry that your operation didn't work. It is not a nice place to be in. I am also based in Yorkshire and had mine done 2 weeks ago. I was expecting a better result when they removed the packing however my ear just feels as though it is blocked and full of water. I occasionally thick it is going to clear but eventually it just returns to the same condition. I was wondering if you had the same problem and it didn't improve over time?
andrea52696 stuart31580
Posted
To be honest I have lived for so long with poor hearing in this ear that you never really appreciate just how bad it is. I was expecting a minor miracle I think. Like you my ear felt blocked but I also had extreme pulsatile tinnitus which I had never experienced before, thankfully that went away after a few weeks. I kept thinking that perhaps I would hear better but imagination I think as the hearing test showed otherwise! Keep up the hope though as many people say it takes time to improve, the ear I had done many years ago is just fine. I hope you see good results
Please post when you have your hearing test results.