Joshy patient story
It is New Years Day 2016. Joshy was 10 two days ago. We are counting down to the next operational – 17 days. I think it is operational number 11 although I am losing count. On the surface we look like a normal family, but Joshy has cholesteatoma and is struggling with it. The impact is far and wide on his life, from being relunctant to wash his hair to being nearly 3 years behind in learning to read. The biggest challenge at the moment is his refusal to have surgery. If you thought the idea of surgery was bad enough, try the idea of having a child refusing to have the surgery.
Our journey started back in 2008 when we were eventually referred to ENT following my refusal to have an eight consecutive course of antibiotics prescribed for him by the GP. Joshy wasn’t diagnosed with cholesteatoma for nearly 5 years, despite having continuous smelly ear discharge and reduced hearing. It took years to get Joshy hearing aids, meanwhile he attended speech and language to learn how to speak so that we could understand him. Joshy was unfortunately told that he had glue ear and when he turned 8 he would grow out of it. We attended an ENT appointment just before he was 8 and he was excited to hear how he was progressing. Unfortunately, we got a diagnosis of cholesteatoma.
The conversation with the consultant was a bit surreal. He refused to write down the word ‘cholesteatoma’ in case we went home and googled it. Obviously we insisted and then went straight home to google it! Things moved fast then. We were referred via the NHS for CT scan and would have had an operation date within 2 or 3 months but I had lost all confidence in the NHS so we went private. The operation date was only marginally quicker, but one big advantage of private consultants is that they have the time to explain everything. We have since returned to the NHS as cholesteatoma is slow growing and the slight delay isn’t terribly relevant (given the 5 years the disease was running wild undetected).
Joshy had 2 canal wall up surgeries on both ears, and lost 2 of the 3 hearing bones on both sides. But the c-toma refused to go away. Last September we had our first canal wall down, and in 17 days the other ear gets canal wall down. I absolutely hated signing the consent form for canal wall down. I resisted so much that the surgeon must have been so frustrated! Why would I want to consent to my child having surgery that might mean he can’t have artificial hearing bones, and might impact on his swimming (which he loves). But ultimately we have to get c-toma free, so I had to sign the consent form.
I hate waiting for him to come out of surgery. Sometimes it is a 7 hour wait. Your imagination runs wild. Unfortunately, I had read up all about the possible complications so I was worried sick. Seven hours is a long time to spend waiting. At the moment I am worried in equal measure about how I will persuade him to take his pre-med and what the implications of the surgery will be. What if I can’t get him to take his pre-med and surgery is delayed for 3 or 6 months? But what if I do persuade him to take his pre-med and he has his operation? Horrible!
I created Cholesteatoma UK as a result of the sheer panic I felt having to consent to canal wall down. I didn’t want anyone else to have to go through that without having access to information and support. The website is evolving and will hopefully have even more information to help and support all others on their own cholesteatoma journey. Good luck to you all, and to my Joshy.