Everyone here has success stories and I know you're trying to feel better about this but I need to share mine, surgery might be a big mistake for you
I’ve been having problems with my left ear since 2011 (4 years), constant ear infections, anti biotics and ENT visits. As a (previous) avid swimmer, I’d taken to using ear plugs as part of my daily regime since late 2012. I’d tried every type of ear plug bar the specially moulded ones, whether I was going for a shower or swim or visit to the steam room, I’d always have some kind of ear plug to block water getting in my ear.
In late 2014, I had a polyp removed from my left ear, a painless procedure done under general anaesthetic. After this, I had a follow up appointment with my ENT who told me I was developing a cholesteatoma and will need to have it removed. At the time, all I was worried about was being able to get back in the water, he assured me that I will be able to swim again, once the ear canal returns to a normal state post-surgery and I have specially designed ear plugs made. He did mention that I will never be able to go diving as the pressure could cause complications in my inner ear.
On Tuesday 30/12/14, I had an appointment to see my ENT specialist to finalise a date for surgery. I had done hours of research on the disease at this stage and was desperate to know if the operation was going to leave my ear canal wall intact, which would allow me to swim again. He told me that the type of surgery depended on how developed the cholesteatoma is and surgery was the only way to find out. I asked him if surgery was the only option, he half-laughed when he told me that the only way surgery is not an option is if I were in my 60s or older as the disease wouldn’t affect my life expectancy, as a man in his early 20s, if the disease is not removed it could meningitis, deafness, facial paralysis and death. He explained the risks of the procedure, which contain the entire list of not having the operation done. He half-laughed again and assured me that the risk of any of the aforementioned were miniscule as part of the surgery but almost certain in later years if the surgery was not done. I didn’t have much of a choice, I had to go through with it.
I had the surgery done on Monday 5/01/15, apart from the polyp removal the year before, I always awake from surgery in severe pain, I told to anaesthesiologist, my ENT and the nurses this and they assured me that it is a relatively painless procedure. I awoke a few hours later in recovery, the pain was beyond anything I had imagined it would be.
I can only remember bits and pieces of the rest of that day. I don’t remember being wheeled back to the ward. I realised there was a large bandage across my head, running from the top of the left side around to the right side of my jaw. I spent that night stuck in a horrible cycle of sleeping for 30 minutes or so then waking up to moan in pain.
On Tuesday 6/01/15, at around 10AM the ENT visited me and told me that I could go home at some point in the day. They checked to see if my face was paralysed and whether or not I had gone deaf in the operated ear. My face moved just fine and I could hear them scratching at my bandage through the inflamed tissue in my head. The ENT then cut the bloody bandage off my head. I was then told that the operation had been a canal wall up procedure and had been successful. I was being discharged with no anti-biotics, the only advice the ENT gave me was to keep my ear dry, I was told to return a week later on Tuesday 13/01/15. I was unbelievably relieved until I saw my face in the bathroom mirror, my left ear looked like it was sliding off my face, it stuck out a lot more and pointed at a different angle to my right ear, I put it down to the inflammation behind my ear, my head was swelling up to an unnerving degree but the doctors and nurses seemed to think it was normal. Hours later, I was given my discharge form and return appointment. The pain was still very intense, almost too blinding to walk with but I was told to take paracetamol and it should die down after a couple of days. I wasted no time in getting out of the hospital when I was told I could leave, I got my things and walked out and tried to forget everything that had happened in there. I was looking forward to going back to work the following Monday 12/01/15. I couldn’t sleep a bit that night, I just kept myself busy by reading but sometimes the pain was so bad all I could do was cradle my head in both hands and stifle moans and tears.
Wednesday 7/01/15, I removed the dressing the ENT had left in my ear this morning. It was so caked with dried blood and pus that it felt like I had taken away part of the inside of my ear when I pulled it out. I felt dizzy for a few hours afterwards and noticed that my ear was filled with dried blood. The ENT never mentioned anything like this happening but he only spent about 5 minutes with me while I was lucid. I remember feeling pain and feeling very cold even with two blankets and jackets on. I spent the majority of this day in bed.
Thursday 8/01/15 was much the same as Wednesday, lots of pain that didn’t seem to be subsiding. At this stage I was on at least 4000mg of paracetamol a day
Friday 9/01/15, I booked another week off work this morning as I clearly wasn’t getting any better. I went to my GP on the off-chance that something was going wrong with my ear. He said it was severely infected, he even brought a colleague in from another patient to have a look, he explained what had happened to me and she gasped when she looked in my ear, she said she'd never seen anything like it. I felt as helpless as a child. My GP gave me painkillers and anti-biotics and told me to contact him if my symptoms get worse, unless it starts to improve then I need to go back to hospital. I spent a few minutes later that day clearing a mess of red debris from my ear until I hit a slow flow of foul smelling discharge, varying in colour from green to red. The position of my ear is still no better than it was the day of the surgery, it points outwards instead of backwards, downwards instead of upwards. It’s taken all semblance of symmetry from my face. I plan on calling the ENT tomorrow as I feel like I’m only getting worse since the surgery.