My Son’s Journey with Ear Infections and Cholesteatoma
- Helen Hindley
- Aug 4
- 3 min read
Updated: Aug 6
As a parent, persistent ear infections can seem like an annoying but manageable part of childhood
WARNING - Post surgery image shared below
As a parent, persistent ear infections can seem like an annoying but manageable part of childhood. For our son, however, they turned out to be something far more complex.
He had a number of recurring infections as a child and poor hearing, which was believed to be glue ear and very well may have been at the time. We tried everything we could: cranial osteopathy to support drainage, periods off dairy (as it can increase mucous and discharge), and balloon therapy (Otovent) to open the Eustachian tubes. On a couple of occasions, his hearing returned to normal, and we were told the glue ear had resolved.
But in January 2024, it was noticeably worse. We paid for a private hearing test and discovered moderate hearing loss in both ears. He had already been discharged from the NHS, so we rejoined the waiting list, with the first available appointment in September. During that time, his hearing deteriorated further, and he had several severe ear infections.
At first, it was assumed that he simply needed grommets, but a particularly heavy discharge from his ear in September raised concern. The hospital consultant, to their credit, took action and referred us to a surgeon at Watford General Hospital. Their care was excellent, and a CT scan was arranged. This is currently the only definitive way to diagnose cholesteatoma. The results confirmed bilateral cholesteatoma, most likely acquired rather than congenital.
We decided to continue under the care of Mr John Hamilton, a highly experienced consultant ENT surgeon based in Gloucester. He has carried out over 2,000 cholesteatoma operations and, where possible, uses lasers during surgery to preserve hearing bones. However, his priority is always complete removal of the cholesteatoma, even if this means sacrificing some hearing. You can read more about Mr Hamilton here.
Our son’s first operation on his left ear took place at the end of February 2025 and lasted 5.5 hours. The second, on his right ear, took place at the end of May 2025 and lasted 6 hours. Recovery is no small thing, particularly for a child. The ear is cut from the top, around the back, and peeled forward. This initially sounded terrifying, but in reality, the process was much easier to manage than expected, especially the second time around.
We made the decision to work with Mr Hamilton because we had high levels of confidence in his approach and felt this was the best option for our son. In the first operation, the hearing bones were saved. In the second, the cholesteatoma had caused so much anatomical disruption that some bones were lost, but a partial reconstruction was performed.
We would like to say a heartfelt thank you to Mr John Hamilton and all the staff at the Royal Gloucester Hospital for their outstanding care and support throughout both surgeries.
Once back home we also had the support of the Human Regenerator, a wellness device using Cold Atmospheric Plasma (CAP). It’s a gentle, non-invasive way of supporting the body, and we used it primarily to help mood, recovery and wound healing. Cold Atmospheric Plasma has been well researched for wound healing support.
Something we haven’t yet mentioned is that since October 2024, once it was understood what our son was really suffering with, he hasn’t been allowed any water in his ears. This has been essential, therefore no swimming or showers, and hair washing has required bath-time plastic covers and a towel over his ear. It’s another reason we believe the post op recovery has been so successful.
Looking ahead, he will need two further operations after December 2025, one on each ear, to check for regrowth and complete any additional reconstruction. These follow-ups are standard in Mr Hamilton’s practice, as scans alone can’t always detect cholesteatoma regrowth.
We also purchased an ADHEAR hearing aid and will share a separate post about our experience with that, including pros, cons, and how it’s helped during this time.
This entire journey has been a rollercoaster. But it’s also shown us the importance of persistence, expert care, and supportive therapies. If you’re a parent navigating something similar, we hope our story offers guidance, reassurance, or even just a little comfort. Please feel free to reach out, as we’re always happy to share what we’ve learned.
Feel free to email us on regenifyhealth@gmail.com to find out about the discount code for your first session or follow us on https://www.instagram.com/regenifyhealth
