Ear surgery - still having some effects years on. Is this normal?

NotToScale · 07-10-2019 11:50am #1

I'd surgery done in the late 1990s to patch up a big perforation in my ear drum. It was a tympanoplasty, a canalplasty and a meteoplasty. I don't know the precise details but they went in though the back of my ear and took a graft from under my scalp.

Anyway I'm just wondering if this is normal years later.

First of all, I've bad tinnitus ever since. It's just never gone away. I can usually ignore it but sometimes it will suddenly shift frequency and I will literally be distracted by it as it's quite loud. It's usually a very high frequency tone about as loud as say a fan running all the time but occasionally I'll get a pure tone that's like a TV station test signal. That'll last for a few seconds and then go away.

2. the operated ear keeps clogging with debris. Every once in a while I'll loose hearing and is due to debris building up deep inside against the ear drum. The ENT suggested drops ofb oil and wax softeners but they just caused me to get external ear infections. I've just found the only way I can manage it is to get micro suction done with an audiologist about twice a year. The ENT didn't see why this was needed but I just get endless ear canal infections if I don't.

3. It's often really itchy. Again I don't know why and the ENT was really unhelpful. It's just constantly irritated inside and I kinda ignore it but it's very annoying at times. I avoid getting water in it and I don't swim.

4. My scalp is still sore if I wear glasses. I get this zinging pain down my scalp and into my neck and my scalp twitches involuntarily in the area.

5. The hearing is somewhat distorted. It'll look reasonable enough on a pure tone audiometry test, although I can't hear some of the tones over the tinnitus, but it's like I'm listening though a bucket of water on that side. The audio levels are lower and it's just not very clear. For example, if I put my finger against my good ear, I wouldn't really make out speech very accurately. I also have to place myself so that people are on my right. In general in noisy environments like bars etc, I can't really follow the conversation..

6. Every once in a while, my left ear just stops hearing entirely for a few seconds. It's weird. There's just a sudden silence and even the tinnitus stops. Then it'll just come back "on" again as if nothing happened. That's been going on since the late 1990s, so I don't think it's anything sinister.

Anyway, I'm not looking for any kind of medical advice on this, I'm just wondering if these are the kind of things you'd expect after that kind of surgery, or if it's worth looking into finding an ENT who might be able to investigate it further?

The audiologist showed me an image of my ear drum and it's definitely a huge graft. The entire drum was a different colour to the other one and not very transparent and you could see they'd definitely worked on the margins around it.

I can't actually get the full details of what was done. The guy had long since retired and when I did an FOI the hospital sent my notes but they were just nursing notes really and info from anesthesiology machines and stuff like that. There was no technical info about the operation which is what I was looking for.

I was just looking for the info because I was going abroad and needed to be able to explain what was done to an ENT in another country but I couldn't get any useful info.

Basically I'm just wondering if my expectations were too high and this is as good as it gets?

the_syco · 07-10-2019 10:25pm

NotToScale wrote: »

2. the operated ear keeps clogging with debris. Every once in a while I'll loose hearing and is due to debris building up deep inside against the ear drum. The ENT suggested drops ofb oil and wax softeners but they just caused me to get external ear infections.

On this; I've two hearing aids. I went through a few different oils, to find the one that doesn't irritate my ear, as one caused my ear to feel even worse! Perhaps try different oils?

Sorry I can't help with anything else.

Perhaps ask the audiologist that you use if they can recommend an ENT, as your current one seems to be useless.

NotToScale · 08-10-2019 12:51am

That's a good tip! Thanks.
Because this only involved my left ear, I never bothered with any kind of hearing aids. It's apparently due to the canalplasty which would have disrupted the skin on my ear canal. So it seems to sort of be less able to slowly move debris along. I actually get almost no wax in that ear, which I think may well be the problem. My right ear is way more normally coated.

I've found the occasional microsuction approach has finally managed to get it under control, so I'm.a bit loathed to put anything in it.

I used a wax softener a few times and ended up needing outpatient treatment for a fungal infection as a result. Apparently it had flushed out the wax (which was keeping the flora if the canal in check) but didn't remove the debris - which seems to be basically tiny amounts of dead skin. So it turned into a really nasty fungal infection. I had to get my ear fairly agressively cleaned out in an ENT department and then filled with anti fungal cream - rinse and repeat each week until it went away. Think it took 4 trips, so I'm really loathed to try anything oil based ever again.

joanmul · 08-10-2019 12:01pm

Would you consider going to a dermatologist. Your operation was done a long time ago and advances have been made in treatment and skin care.

NotToScale · 08-10-2019 7:39pm

I looked into it before, and I couldn't seem to get anyone to refer me without going via an ENT and also the wait times for a private ENT appointment here are insane. Basically, because it was related to an ear canal, they wouldn't see me. It's taking me up to 6 months to get seen privately and if you're on the public lists, you'd probably be waiting a lot longer.

I am thinking I might go over and make enquires next time I'm on the continent as I don't really think I'm going to get any answers in Ireland. Might have more luck elsewhere.

Getting microscution done twice a year isn't exactly a huge deal, but I would like to see if I could figure out some way of avoiding on going issues.

I'm just amazed that all these years later though I still have pains in my scalp. If I put on glasses or wear over-ear headphones it's sore all around the area where they went via the back of my ear. Also sometimes glasses will make the area behind my ear twitch / my face twitch slightly.

What shocked me a bit about the actual operation (as long as go as it was) was that after it had jaw lock and couldn't stand up straight for weeks, my neck wouldn't straighten and I couldn't open my mouth more than about 1cm.

I've read up a lot about tympanoplasty and the kind of effects I had almost sound more like what you'd get with a mastoidectomy, yet I don't think I had one of those, but I can't get access to any of the notes.

I'm sure techniques have moved on, but I am guessing late 90s Ireland meant probably fairly behind the times equipment and so on, even for those days.

I think though I'll just go and get in fully checked out in Belgium. The guy I went to said he couldn't really figure out what had been done without doing a CT and he wanted me to get the notes, which I tried to do and failed.

the_syco · 09-10-2019 12:18am

NotToScale wrote: »

when I did an FOI the hospital sent my notes but they were just nursing notes

Consider getting a solicitor that specialises in the area of hospital malpractice, and see if they have any hints on what you need to ask for, and/or if he can assist you getting the notes. From the above, it's time you took the nuclear option.

NotToScale · 09-10-2019 12:20am

I don't think the hospital actually has notes - they sent me everything they had on file which was really helpful. There was nothing held back. It's just the info they have on file is mostly about nursing and nothing to do with the technicalities of the ENT procedure itself. The consultant would have had them but as I say, long long since retired and practice is shut down. So I don't know if you can pull notes like that from some archive, or if after than length of time they'd just be destroyed.

All I really want to do is get the recurring external ear infection issue sorted out. Other than that, I'm not really bothered and I don't really have any intention of going after someone legally for an operation done that long ago. I don't think there's any negligence involved and I am certainly not looking at it from a legal point of view, just a simple set of queries about solving a problem.

joanmul · 09-10-2019 9:23am

the_syco wrote: »

Consider getting a solicitor that specialises in the area of hospital malpractice, and see if they have any hints on what you need to ask for, and/or if he can assist you getting the notes. From the above, it's time you took the nuclear option.

I agree with that. You might think that they’re giving you everything but legal specialists always seem to discover something else. It’s their job. It sounds to me as though you’ve been too ‘nice’.

NotToScale · 10-10-2019 10:37am

As this stage though you're talking about notes from a long time ago and I'm not looking to pursue some kind of legal action, rather I just wanted to know what was done in more detail, so that I could deal with a new team elsewhere.

It looks to me like detailed notes in the procedure don't exist.

CiDeRmAn · 11-10-2019 11:29am

The pains in the scalp sound like the consequences of some sort of nerve involvement during the entry behind your ear and perhaps during the removal of the graft.
It's not uncommon for their to be short term pain in such a site, the region is often thinner and more sensitive.
But longer term pain, such as you are describing is uncommon.
I wonder, if it is nerve, would some sort of block on that nerve, assuming it's not motor, could alleviate that suffering, a botox type application.

Seems the nerve supply there is the Cervical Plexus, trauma to which would explain some of your symptoms and it appears to be exactly the nerve group in that area.
It supplies the ear and the front and lateral aspects of the neck on that side.

As for the issues with the draining and infections of the region, it's probable that, despite the best efforts of the surgeon the normal function of your ear is going to be compromised, but it is possible you are suffering unduly.

A repeat consultation and perhaps corrective intervention could be required.

NotToScale · 11-10-2019 12:54pm

I’d definitely look at any noninvasive or minimally invasive options but there’s absolutely no way I would go through any kind of major ear surgery again as the experience at the time was just beyond awful.

I’m still really surprised at how much impact it had on me. I was dizzy, couldn’t straighten my neck for months, jaw muscles locked up, tingling in face and neck, my eye brow went droopy for a while, I used to get metallic tastes in my mouth. All of that seemed to be related to nerve involvement and the worst of it went away, but I still have a pain in my scalp and if I wear anything like an in ear headphone my ear and scalp will twitch.

Basically the surgery itself took about 4.5 hours and was followed by three dressing changes under general anesthetic in outpatients. I had a huge big dressing over my that covered of my cheek and right up to about half my scalp on one side - the size of a large over ear headphones. After that there was packing and a wick in it that had to be fed with ear drops and then eventually that was all removed and after that the canal just kept closing up with debris and swelling and continued to do that intermittently for years.

I can at least wear glasses now, as long as they’re not pressing on certain spots. I just wore contacts for most of my teens and twenties.

Basically the inside of my ear feels like it’s slightly “raw” all the time and I’ve a line of pain back from there extending about 3cm into my scalp. I’m just used to it at this stage and don’t notice it that much unless I press on it with headphone or sleep on that side.

Other than that it’s very slowly improved over the long time since the surgery, but for example the doctor in Belgium (GP) I went to pressed the area behind my ear very hard and it was extremely sore. She then though I had a mastoid infection and sent me to an ENT who concluded I absolutely did not have one but couldn’t figure out what exactly has been done and why.

Hence my curiosity and digging for info and notes. He was wondering has some damaged or infected mastoid tissue been removed or something, which was why he was saying without the detailed notes only really a CT could figure out what was done and even then he’d be guessing.

In general though it has slowly but surely improved even if it’s taken 15 years, it’s not as sensitive as it used to be.

The hearing is more distorted than bad but I think that’s as good as it’s likely to get and I’ll just put up with the tinnitus and the odd silence. It’s not getting worse, so I’m just thinking leave well enough alone.

I generally deal with the tinnitus by ignoring it or drowning it out. If I get it really badly I just put on music or leave a fan on at night. It doesn’t wake me up as often as it used to but I works sometimes get woken up by it and have to put on music. I mean I know I’m probably just moaning and I realize that loads of people have tinnitus in the background, which is what I have mostly, but sometimes it’s like just this sudden loud tone that would be maybe as loud as speech.

The only thing I find is that I can’t really concentrate very well without music - I definitely never read for pleasure, as I just get distracted. I just find the tinnitus becomes very much in focus. So for studying I just always listed to music.

But anyway, sorry for the meandering post and I guess I’ll just adapt.

the_syco · 14-10-2019 8:00pm

NotToScale wrote: »

I definitely never read for pleasure

Have you considered audio books? As I suffer from travel sickness, I used to listen to Tom Clancy audio books on the way to work; you'll need to find a speaker you like, as some of the people who read the books are crap!

NotToScale wrote: »

But anyway, sorry for the meandering post and I guess I’ll just adapt.

Funk that. If it's fixable, continue to look into it. If you find out it's unfixable, fair enough, but why just live with it if there's a chance?

NotToScale · 15-10-2019 10:57am

I don't really enjoy audio books. I've tried them and in general I lose interest. I read plenty of academic journals and articles, listen to factual, science and arts podcasts and so on, but I just cannot seem to get into a novel as I just don't have the concentration ability.

As for revisiting the surgery - that's just not happening. The tinnitus is most likely caused by damage to my inner ear and that's not, at least with present day technology, reparable. I would also be extremely unlikely to go through any further ear surgery unless it were totally unavoidable. I certainly wouldn't do anything elective anyway. I can live with the tinnitus and the odd audio drop out. It seems to be entirely unchanged for all that time, so I don't think it's likely to get worse.

As for the nerve block suggestion. At this stage I'm just used to the fact that if I press on my scalp it hurts, so I just ensure that anything I wear in my head - glasses or headphones don't press on those specific area or that they're light enough not to cause an issue.

I'd be a bit wary of blocking a nerve given how complex and they are and how unpredictable some of the outcomes could be. The nerves in that area feed a lot of if sensory stuff and fine muscle control so, I'm just not keen on playing around with them beyond just figuring out ways of avoiding setting them off. It's obviously some kind of neuralgia. It has slowly (and I'm talking over a decade or more) improved. So maybe it will eventually go away.

I improved it quite a lot by doing my own neck exercise plan and even after the op, I used to just stand against a wall and stretch my neck until I could stand up straight. It took me a good few months to be able to straighten my neck back to normal - I probably should have done physio at the time, but it just didn't come up as a suggestion. For some reason it still seems to feel odd down along the muscles from the scalp into my neck and I get the odd tightness but it's not that big a deal, I just massage it out and it seems to go back to normal again.

Ear surgery - still having some effects years on. Is this normal?

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