- Cholesteatoma
- Interviews
JWilcox's interview
How did all start?
The condition I am talking about is cholesteatoma. This is a type of skin cyst that is located in the middle ear that can erode and destroy vital structures within the temporal bone and even lead to meningitis and death in extreme cases. One can have it for years or even decades without knowing it. It can be painless or not, and it can be caused by a variety of things, among them, eustachian tube dysfunction. It has a greater prevalence in people with perforation eardrums and/or chronic ear infections. I have suffered from ear infections and perforated eardrums all my life (I am 38 years old), so it seems likely that the cyst has been growing inside my ear for some years before I was formally diagnosed in April 2023. Once diagnosed, surgical removal is really the only solution. After that, the cyst may or may not return. Some cholesteatoma sufferers have multiple surgeries throughout the rest of their lives, while others may be successful in having the cyst completely removed and not regrowing ever again.
Do you already have a diagnosis? How long did it take you to get it?
I went to my GP with an ear infection in October 2022. Ear infections are not unusual in my case, and I already knew I had perforations in both eardrums, but this infection lingered and just wouldn't shift. It came and went in both ears for six months, most intense in my right ear. After eight courses of antibiotics with no solution and having been told I had a year to wait for an ENT consultation on the NHS, I paid for private consultations at Nuffield in March 2023. Things moved quicker then. I was diagnosed in April 2023 with cholesteatoma in my right ear. The surgeon said I would need surgery in my right ear very soon to remove the cyst, repair any damage sustained to the middle ear, and patch up the eardrum. He also said I would need surgery on my left ear to patch up my eardrum on that side. No cyst in there, so less urgent. I had my surgery on my right ear (self-funded) on 24 September 2023. As I write, I am a week into recovery. The hope is that the operation removed the cholesteatoma In fairness, the 11-month wait in this case is partly a reflection of the current strains on the NHS. However, it is also true that a typical GP is unlikely to know about cholesteatoma (or at least know much about it). Moreover, it is very difficult to diagnose on inspection alone. One needs a specialist and, crucially, a CT scan.
For what medical specialties have you been treated? What has been the most useful specialty for your?
ENT, otology, otorhinolaryngology
What has been the most useful thing for you so far?
(1) Ciprofloxacin eardrops
(2) Reading up on the condition
(3) Finding a surgeon I trust and can ask questions to
(4) The “Cholesteatoma - The Hidden Disease” Facebook group
What have been your biggest difficulties?
(1) Prolonged ear infections throughout my life
(2) The associated hearing loss, tinnitus, and aches that come with those infections
(3) Most recently, the pain and exhaustion of post-op recovery, but probably more than that, the anxiety of the pre-surgery wait
(4) Perhaps most of all, the knowledge that there is a good chance (could be as high as 60% but data is highly variable) that the cyst will return and that I may need several operations for the remainder of my life
(5) At the more everyday level, having to think twice before swimming, doing water sports, or even the hassle of daily things like wearing ear protectors in the shower and always taking a hat in case it rains.
How has your social and family environment reacted? Have your social or family relationships changed?
You soon find out the value of certain friendships. Some friends step forward, are supportive without being overbearing, try to understand your condition, give you space to let off steam and make practical allowances for your condition. I've been lucky. My family, friends and girlfriend have all been amazing, even if some of them don't fully appreciate the extent of the condition (why would they?). My hearing loss has, to date, been only partial (in one ear, and not a complete 100% loss), but it does add new dynamics to social situations. You find yourself wondering where to sit in a pub to be able to hear, standing on certain sides of people, choosing specific environments where the audio settings are more conducive to your reduced hearing, and so on. In the week after my surgery, I find the noise of traffic or a crowded supermarket pretty much intolerable.
What things have you stopped doing?
(1) Showering without any form of ear protection.
(2) For now, swimming (I hope I can in the future).
(3) For now, vaping/smoking, which are empirically proven to be linked to poor hearing outcomes (as well as the other more obvious negative health consequences).
What do you think about the future?
I am a great believer in stoicism and being measured. Many, many people have it far worse than I. That goes without saying and sounds cliched, but sometimes you can genuinely (if momentarily) forget it. It is a thought everyone should bear in mind when they feel at their lowest. That said, we should also be kind to ourselves, while facing the truth of our diseases. I actually gained a lot from learning as much about my disease as possible (and I'm still learning every day). Treasure the moments in life you really enjoy. Perhaps surprisingly, finding out about my disease has also made me more outward-looking. I have started volunteering at my local library delivering books to people who are unable to come to the library, I have donated more to charities recently in a long time, and am trying to start learning sign language. I think when you are diagnosed with a rare condition, it can reinvigorate you to throw yourself back into the world, for fear of the alternative path of getting lost in yourself and suffering.
So far, which years have been the best years in your life? What have you done during them?
This, for me, doesn't seem strictly relevant to my condition, which has manifested in my case with around 20 ear infections throughout 38 years of life, slight hearing loss and mild tinnitus, all until 2022 when the infection symptoms were more intense and more prolonged than any previous infection and I was eventually diagnosed with cholesteatoma and operated on. I am now one week after that surgery and we will have to see how it goes. Hopefully, the cyst will never return in my right ear. However, I will need at least one further procedure, on my left ear, a tympanoplasty. Still, for what it is worth, the best years of my life were probably the period spent studying, reading, writing, and travelling.
What would you like to do if you didn’t have your condition?
Snorkelling, deep sea diving. It MIGHT end up being possible with my condition after surgery, but it seems likely, and besides, it is probably not worth the risk.
If you had to describe your life in a sentence, what would it be?
Currently ongoing and not unpleasant.
Finally, what advice would you give to a person in a similar situation?
It may be too early to say yet, but I suspect I am quite lucky in some respects. Judging from the size of the cyst from the CT scan, it appears that my surgeon identified the cholesteatoma in its early stages of growth. That is, he has been able to identify and now remove it before it grew large enough to destroy any of the three components of the ossicular chain (the three hearing bones) that enable us to hear sound. I have not spoken to him since the operation (I will see him at the end of October), but his report to my GP suggests that both the taste nerve and the hearing bones were preserved, although one of the hearing bones (the malleus) did sustain some erosion. I won't know if my taste and hearing have been fully restored for a few weeks yet, but fingers crossed.
So, what am I saying? I'm saying if you are someone with a history of ear infections and/or perforations, or with eustachian tube dysfunction, and wonder if you've got cholesteatoma or a similar condition, get a diagnosis as soon as you can. Be firm in your request to see a specialist (e.g. ENT consultant). Cholesteatoma is pretty rare. According to some estimates, around 1 in every 16,000 people in the UK have it (I've seen similar figures for the US). So, that means it might be trial and error before you get a diagnosis or you might have to do your own research. If you have to pay and can afford to, it's worth it. My experience is UK-based and this may vary across the world, but if you can pay for at least one private appointment, if only to get an expert opinion, do so. Once you have a diagnosis or at least an expert opinion, you may be able to get listed for treatment in the state system a lot quicker.
Second, try to learn as much as you can about your condition. Smarter people than I may call this need for knowledge a psychological need for the illusion of control, but I just see it as essential to helping you make informed decisions, planning ahead, and being mentally and practically prepared. I would feel the same about a more serious or indeed life-threatening disease.
Third, join a patient group. The cholesteatoma FB group was a HUGE help to me, both in terms of exchanging advice and stories and in terms of getting the emotional support you get from talking to someone else with the same disease (especially if it is a rare one; a friend of mine who died of myeloma a few years ago said the same about the support group he joined). Your family and friends can sympathise, but they can never KNOW what it is like living with the condition. Sharing that experience is invaluable and should be cherished. And I'm sure that is true no matter the condition. Such groups are really useful for practical titbits too. I did most of my pre-op shopping based on advice from its members (neck pillow, dry shampoo, throat lozenges, painkillers, headband, etc.) and nearly all these items have been essential in my recovery.
