kingoflondon
New Member
- Joined
- May 27, 2009
- Messages
- 3
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Hi,
I would not normally post on a forum like this, but I feel pretty alone and scared right now, and I don’t really know what else to do but let it out. Perhaps that will help, and perhaps if anyone has any similar experiences or helpful advice then that would be much appreciated! Sorry that my first ever post is such a long one!
For starters I almost feel guilty writing in this forum, as I’m sure many of you have more to complain about than me – I’m not completely deaf for starters. I have had problems with my ears for the past 15 years or so though, and in recent weeks things have taken a turn for the worse.
When I was about 14 I started getting earaches in my right ear. I went to the doctor and he said that I had some polyps that would need removing. After this operation I received a letter saying that while they were operating to remove them, they noticed that I had a cholesteatoma, and that would also need to be removed. It’s not especially major, but was quite worrying at the time. I went ahead and had the operation, but afterwards I continued to have problems with pain and other nasty side effects such as discharge. I continued to see the doctor, but each time he discharged me without giving me a follow up appointment, saying that it looked fine to him, and that I had nothing to worry about. Of course this left my parents thinking that I was making a fuss over nothing, and in time I learned to live with the pain it caused me, and got used to the hearing loss and other problems I was having over the next couple of years. It was a frustrating time as everyone thought that I was exaggerating over nothing.
At age 18/19 I moved away from my parents to attend university in London. I therefore started seeing a new doctor who was located here, and who is a noted professor and expert in ear problems. Upon seeing my ear he immediately saw a big problem and scheduled me in for surgery. I ended up having a radical mastoid exploratory procedure, which is generally something that isn’t done much anymore, as a result of the extent of the disease in my ear. He told me that it is perhaps the worst case of its type that he has ever seen, and that the original operation was a failure, and that I had consistently been misdiagnosed before. I had a large section of my mastoid and ear taken out and was left near totally deaf in my right ear – they say it’s a miracle that I can hear anything at all, but it’s not enough to discern speech or anything like that unless someone were to shout directly in my ear! I also have extremely bad tinnitus and blood rushing noises in this ear.
At the time I considered legal action against the original doctor, but I did not go down this path after discovering that following a bout of alcoholism he had been struck off the medical register and had since died. It would be extremely difficult to prove negligence in this case at any rate.
I have since had another four operations to try and repair and improve my right ear and get it to a stage where it was manageable. It currently causes me some problems, but I am mostly fine.
I graduated from University five years ago now, and have been working in London for a consultancy firm where my tasks include speaking to the press, editing publications, speaking at conferences and other tasks. It is quite a senior role, and I enjoy my job. I never let the problems I have had with my right ear get in the way of my job, and have always been reluctant to tell people about my experiences.
Around two months ago now disaster struck when at a friend’s house for dinner I suddenly started having problems with the hearing in my left ear, which had thus far never given me any serious problems. Sounds were distorted, and my hearing dropped to a very low level. There was also some pain.
I went to see my specialist, and he advised that I should try and leave it for a few weeks to see if it got better by itself, before perhaps trying an air tube, or grommet, in order to try and drain away any fluid that might be causing me problems. He was reluctant to do it initially as sometimes these things can clear up by themselves, and seeing as I was already pretty much deaf in the other ear, he’d rather not take the risk, even though it was small.
Anyhow, after a few weeks it had not improved, and so I went back and had the operation. Although it all looks good, and there is no sign of disease or anything like that, I have not experienced any recovery in my hearing. The doctor says that he thought the hearing would have improved pretty much immediately, and so there may be something else wrong. I am due to go back into hospital next week for more tests.
In the meantime I have been really struggling at work. I cannot hear what people are saying, and I am finding excuses to get out of meetings wherever possible. Every day I go home feeling exhausted from a day spent straining to hear people and focusing on their lip movements to try and discern what they are saying. I get frustrated with people easily, and have taken it out on my family and my girlfriend when they haven’t really done anything wrong. I just feel so frustrated, and it just feels like it’s one thing after another. I see myself as a fit and active person, never taking days off work, and never complaining about being ill, and I hate the thought of people thinking less of me because of all this. It’s really difficult and it’s upsetting just writing this down because I don’t know what else to do.
Anyhow, sorry for the massive moan! If anyone has any wise words then they would be massively appreciated.
I would not normally post on a forum like this, but I feel pretty alone and scared right now, and I don’t really know what else to do but let it out. Perhaps that will help, and perhaps if anyone has any similar experiences or helpful advice then that would be much appreciated! Sorry that my first ever post is such a long one!
For starters I almost feel guilty writing in this forum, as I’m sure many of you have more to complain about than me – I’m not completely deaf for starters. I have had problems with my ears for the past 15 years or so though, and in recent weeks things have taken a turn for the worse.
When I was about 14 I started getting earaches in my right ear. I went to the doctor and he said that I had some polyps that would need removing. After this operation I received a letter saying that while they were operating to remove them, they noticed that I had a cholesteatoma, and that would also need to be removed. It’s not especially major, but was quite worrying at the time. I went ahead and had the operation, but afterwards I continued to have problems with pain and other nasty side effects such as discharge. I continued to see the doctor, but each time he discharged me without giving me a follow up appointment, saying that it looked fine to him, and that I had nothing to worry about. Of course this left my parents thinking that I was making a fuss over nothing, and in time I learned to live with the pain it caused me, and got used to the hearing loss and other problems I was having over the next couple of years. It was a frustrating time as everyone thought that I was exaggerating over nothing.
At age 18/19 I moved away from my parents to attend university in London. I therefore started seeing a new doctor who was located here, and who is a noted professor and expert in ear problems. Upon seeing my ear he immediately saw a big problem and scheduled me in for surgery. I ended up having a radical mastoid exploratory procedure, which is generally something that isn’t done much anymore, as a result of the extent of the disease in my ear. He told me that it is perhaps the worst case of its type that he has ever seen, and that the original operation was a failure, and that I had consistently been misdiagnosed before. I had a large section of my mastoid and ear taken out and was left near totally deaf in my right ear – they say it’s a miracle that I can hear anything at all, but it’s not enough to discern speech or anything like that unless someone were to shout directly in my ear! I also have extremely bad tinnitus and blood rushing noises in this ear.
At the time I considered legal action against the original doctor, but I did not go down this path after discovering that following a bout of alcoholism he had been struck off the medical register and had since died. It would be extremely difficult to prove negligence in this case at any rate.
I have since had another four operations to try and repair and improve my right ear and get it to a stage where it was manageable. It currently causes me some problems, but I am mostly fine.
I graduated from University five years ago now, and have been working in London for a consultancy firm where my tasks include speaking to the press, editing publications, speaking at conferences and other tasks. It is quite a senior role, and I enjoy my job. I never let the problems I have had with my right ear get in the way of my job, and have always been reluctant to tell people about my experiences.
Around two months ago now disaster struck when at a friend’s house for dinner I suddenly started having problems with the hearing in my left ear, which had thus far never given me any serious problems. Sounds were distorted, and my hearing dropped to a very low level. There was also some pain.
I went to see my specialist, and he advised that I should try and leave it for a few weeks to see if it got better by itself, before perhaps trying an air tube, or grommet, in order to try and drain away any fluid that might be causing me problems. He was reluctant to do it initially as sometimes these things can clear up by themselves, and seeing as I was already pretty much deaf in the other ear, he’d rather not take the risk, even though it was small.
Anyhow, after a few weeks it had not improved, and so I went back and had the operation. Although it all looks good, and there is no sign of disease or anything like that, I have not experienced any recovery in my hearing. The doctor says that he thought the hearing would have improved pretty much immediately, and so there may be something else wrong. I am due to go back into hospital next week for more tests.
In the meantime I have been really struggling at work. I cannot hear what people are saying, and I am finding excuses to get out of meetings wherever possible. Every day I go home feeling exhausted from a day spent straining to hear people and focusing on their lip movements to try and discern what they are saying. I get frustrated with people easily, and have taken it out on my family and my girlfriend when they haven’t really done anything wrong. I just feel so frustrated, and it just feels like it’s one thing after another. I see myself as a fit and active person, never taking days off work, and never complaining about being ill, and I hate the thought of people thinking less of me because of all this. It’s really difficult and it’s upsetting just writing this down because I don’t know what else to do.
Anyhow, sorry for the massive moan! If anyone has any wise words then they would be massively appreciated.
I would suggest you to check CI threads under sub-forum. 
to AllDeaf forum. I am sorry that you have a problem with your hearing loss and the trauma you have gone through in surgery. I hope you can talk to Jillio in the Adustment to late onset deafness thread which is on General Chat. It will help you cope with your hearing loss. I hope you have fun reading and posting all the threads here. See you around. 