I am writing this thread about experiences from my own perspective as a partner of a Cholesteatoma sufferer. I have searched the internet for experiences similar to mine but was unable to find anything. I am hoping that this story may be able to help others understand their loved ones (or themselves) if a similar thing happens (or has happened) to them.
About 11 years ago when my partner was 31 years old, he slowly began to treat me differently. Very gradually, his behaviour towards me changed and he no longer seemed to care about me (or our young children) and his love and kindness slowly became what I can really only describe as hatred. He lost weight and became withdrawn, he didn't come home much as he worked a job that required him to be there for long hours but when he wasn't at work I mostly had no idea where he was. When I did see him, all he would say to me was that his love for me was lost and he wanted to leave.
I became highly stressed about this situation and began to react to his nastiness and other behaviours that were completely out of character by being nasty back - this basically made our home life a living hell. I did not have enough experience to know that all of this was happening because he was suffering from depression. Depression isn't like a broken arm, you cant see it - I had no idea what was happening until much later...
After about 6 months, he slowly started to get back to being his old self, a little while after this he was diagnosed with Cholesteatoma. This was after his GP finally realised that his recurring ear infections needed further investigation by an ENT.
He was finally diagnosed with Cholesteatoma and after the operation to remove it, he needed a subsequent exploratory operation (about 6 months after) to check to see all of the growth had been removed. He had several procedures to insert grommets in the time after this and about 5 years after his initial operation, he had rhinoplasty to correct the structure inside his nasal passages as his Eustachian wasn't functioning properly. Apart from the occasional ear infection, things were pretty good with his ear for a while.
In May last year, I saw glimmers of him being nasty towards me and out of character behaviour but I put it down to him losing his father the previous year and his mother was terminally ill. On our yearly family holiday a few months later, he began to say to me that he wasn't happy, and he wasn't happy with our relationship and he wanted to leave. It was like deja vous, being a bit older and wiser decided to put my energy into researching - to try and find an answer about what was going on. I wanted to know what was causing him to be this way, it was difficult to communicate with him as he became very drained and unresponsive during any conversations. The holiday was one of the saddest times, I booked us in to see a marriage counsellor while we were away to see if anything could be done and it didn't help at all.
After many hours of research I realised that he was suffering from depression. I asked other family members to help me encourage him to go and seek help from a psychologist, which he eventually did do but it did not help. He tried taking an antidepressant but it did not work and made him very sick. He had no energy to talk to me at all, we barely spoke for many weeks. I continued to research depression so I could try to understand what he was going through (and how to care properly for him) and I also researched relationship issues. He continued to say he wanted to leave as soon as he was feeling better from his depression. I continued to care for him during his illness from the antidepressants and his major depression (as diagnosed by the psychologist). As this had been the second time that he had said he wanted to leave, I began to believe him that we needed to go our separate ways. He cried and cried when I told him he was free to leave and we could be friends as we continued to raise our kids. Only one and a half days after this, he had a major meltdown and called me home from work (as he had been at home for quite a while because if his depression related illness), when I arrived he begged me to stay with him and said he did not understand what made him feel that he wanted to leave because he didn't want to as he loved me very much and always would and he didn't understand what had made him act the way that he had.
I agreed to stay with him and 2 months later his ear started leaking a clear fluid - as I had started to rely on (Doctor) Google for answers on just about everything, I Googled his symptoms and I became worried that this clear fluid was spinal fluid. He went to the ENT and it was discovered that the Cholesteatoma disease had returned aggressively and he needed to be rushed into surgery as soon as possible - it was life threatening. The disease had eroded bone and was dangerously close to his brain and required a radical Mastoidectomy and Tympanoplasty. We are very fortunate and grateful to have a wonderful ENT, he did a great job of the operation and recovery time was relatively fast.
Things have been going pretty well for him post op although he will be having a small op for a grommet in 2 weeks time - there is currently an issue with the pressure in his ear.
My intention of sharing this deeply personal story is that hopefully it may help someone. Through my depression research and subsequent Cholesteatoma research I have not seen any formal information about a linkage between the two in the way that was experienced by my partner. I asked the ENT what his thoughts were about suffering depression prior to Cholesteatoma and he said that in his opinion there is a link - anything intracranial can affect the normal functioning of the brain. I also asked about whether anti-depressants may have contributed to his aggressive Cholesteatoma but he seemed to think not.
I don't think this is the end of our story with Cholesteatoma, but if my partner and I are still together in the future I will definitely know what to look out for.