My Ear Appointment

Finally, after many months of waiting, I went today to see the specialist about my hearing problem. He was apologetic about my referral going astray, but I guess it was more the fault of Royal Mail than of him. First of all I had a hearing test which was normal. However, the whooshing pulsatile tinnitus was very mild in my right ear today so it wasn't the best day to see him. On the days when it is very bad I can hardly hear the TV. But it's always the way when you go to the doctors eh? I explained all my symptoms to him. Told him that I start getting light headed and feel like fainting if I lie on my tummy or stretch above my head, and also told him that 3 people (Steve, Jude and Hannah) were able to hear the sound in my right ear by listening with their ear against mine. At this point he got rather excited. Apparently he has only come across that 3 times in his career (and he wasn't a young man). I did explain to him that the whooshing sounds in my ear were not bad today but he had a listen anyway and seemed rather disappointed at not being able to hear anything. I explained that sometimes it can be very loud for maybe two weeks, and then quiet for two weeks. I offered to take his phone number and I'd call him next time it was audible, if he was that keen to hear it, LOL.

Anyway, I tried my best to express that this sound really was audible to others at times and it wasn't in my imagination. Thankfully he believed me, even though it is very rare, and said I had explained my symptoms perfectly and they all fitted (fitted what? I'm not sure).

So then he told me that as we age we get a thickening of the arteries and this can cause noises in the ear. Um, yes, so I turn 30 and all of a sudden I'm old?! But then, considering my age it was rather unusual. Thank goodness for that. So he told me he was referring me for either an MRI scan or a CAT scan of my head and neck. Then he preceded to tell me that it's very rare indeed (just as the noises being audible to others is) but there is a slight possibility that there is an abnormality in the arteries of my neck and head, or possibly a tumour in the eardrum. Nice. But don't worry, he said, because it's very rare... but if others have heard the noise, well, we better be sure. So there you go. I wonder how long I will wait for the MRI/CT scan, and what that will entail. Hopefully the scan appointment will be on a day when the whooshing sounds are bad! lol.

More strange noises

I went to the doctors again, two weeks ago, about this pulsatile tinnitus. She was more concerned this time since I told her that the noise in my ears was getting worse, and was now audible to the outside world. In other words, if Steve puts his ear on my eat he can hear strange noises too. Therefore it is not 'all in my imagination'. Of course, when I was at the doctors the noise was not present, so she couldn't hear it, but she took my word for it.

I still have the constant whooshing sound of my heartbeat, which is present at all times in my right ear. If you remember in my last post I said that I was also getting new noises which would only last a minute or so. But now, this new noise, is present most of the time. This is the noise which can be heard by other people, if they listen to my ear. I know, it sounds bizarre. Jude also heard it, as did my sister Hannah, when they listened to my right ear. This noise is hard to explain. It's also beats in time to my heart beat, but instead of whooshing (the separate whooshing noise is still there) its more of a creaking humming sound. I was happy enough when it only happened on occasions, but now it is there almost constantly. Sometimes the creaking noise goes, but then it comes back suddenly, as if someone just turns on a switch. I thought the whooshing heartbeat noise was driving me insane. But now I've realised that it was quite a pleasant experience in comparison to this new noisy creaking carry-on. Sometimes its loud enough that I can't hear the TV or a conversation. Sometimes I catch myself turning my head to see where the noise is coming from.

So anyway, the doc was a little more concerned about these new noises. She looked at my eardrum. Last time it looked normal. This time it looked 'dull'. She asked if I'd had a cold recently, which I hadn't. Usually a dull ear drum is a sign of a bad sinusy type cold. At least she could see something this time. So she phoned the hospital to see what had happened to my referral. She had written my referral letter in May. Then she wrote a second referral on 1st October when I'd been to see her again, as she felt it was more urgent than before. The hospital claim they didn't receive either referral letter and had no idea that I was waiting for an appointment. This made me crazy! They agreed to give me the first available cancellation. That was two weeks ago, and I still haven't heard anything from them. The annoying thing is that I should have already been seen by now. I'm pretty sure the first appointment will tell me nothing, and will just be to decide whether I need to be seen by a specialist. So I want to get that appointment out of the way.

I'm tempted to pay to be seen privately. If I pay for the first appointment I can re-join the NHS list at the next stage and be treated sooner. But I loathe to pay out good money when I should have already been seen by now. I'll call the doctor again on Monday and get her to chase the hospital again. In the mean time, poor Steve is probably sick of my constant complaining, especially at night time when I long for peace and quiet. I think I might go completely mental. Judging by the number of people who have reached my blog by googling 'pulsatile tinnitus', I am not alone.

The torture of pulsatile tinnutis, and neurofibromatosis.

I was just having a lie down in bed, but the pulsing in my ears is unbearable and I can't stand to be in a quiet place. It is driving me insane. Although I've been referred to a specialist (months ago) I have no sign of an appointment yet. It seems I could be waiting indefinitely. It's really starting to get to me.
And it's getting worse. It started months ago. A faint pulsing sound in my right ear, which would come and go and which I could only hear at night when it was very quiet. I used to almost have to 'listen out for it'. Gradually over the year it's got worse, louder, and into both ears. Last week it had got to the stage where it is a loud gushing heart sound, which I can hear during the day. I can even hear it with the sound of the TV and kids in the room. It is my heart beat, there's no doubt about that. I can hear it get faster when I'm stressed. But the sound is in my ear drum, not my heart, and it's clearly audible, not imagined. The doctor said it was unusual for someone so young to suffer from it, and so she referred me to the specialist. It is different to normal tinnitus, which can happen for no reason. Pulsatile tinnitus is usually caused by an underlying medical condition, and can be caused my small benign tumors in the arteries in the neck. I now have the sound in both ears, although worse in my right. But this week I am also hearing new noises. Electrical noises. They can last for anything between 5 and 30 seconds, these new noises, but they always stop, and once again I am left with the pulsing. It's almost as if my brain is an electrical circuit that is sparking and malfunctioning, in an audible way. My fear is that the electrical noises will become permanent too, and then I shall go mad, for certain.
When this first started I could get to sleep and then the noises would fade and I would have peace. Now I can't get any silence at night. I can't get into a position where the noise in my ears subsides, and to make it worse, the noises have started to wake me up! This is driving me crazy. I feel like I'm going deaf. I can't hear what people are saying on the phone, above the sound of my gushing heart beat. I miss lines in films because my ears decide to play a little electrical tune for a few moments. I can only describe it as torture, and if it gets any louder or becomes a noise other than my heartbeat I shall certainly be committed to an insane asylum.

Still, I should be grateful. There are far worse things that one could suffer from.

Which brings me to Steve. He went to the doctors today and had a gallon of blood taken for testing, poor guy. The doc thinks he may be suffering from an over active thyroid condition, which may or may not be caused by his neurofibromatosis, if a tumour is growing near the thyroid. He will get his tests back next week. She has also tested for a heap of other things. Steve was told that if an NF lump grew in an organ he would be ill. He has been ill, for many weeks. So far his lumps have all been in less serious places, mostly in his arm, in which he has undergone many operations. Maybe this is nothing to do with NF at all, but it's always a worry that a lump may be growing somewhere that could make him ill (his liver was mentioned by the dr). I guess we will know more next week when the results come back. He really needs a few weeks off work, to rest and recuperate. He has paid someone to run his shop this week so that he can have some rest, but we can't afford it, and he will not be able to do that again. I have offered to run the shop for him so that he can be at home, but then he will have to take care of the kids, which may well turn out to be a harder job than running a business! Oh we both need a good MOT and some new parts fitted.

I guess that's enough of a whinge for now. I generally cope well with stress, but worrying about Steve has taken it's toll on me and this afternoon I felt really quite unwell and upset. I just turned to jelly and had to lie down, only to be reminded of that hideous noise from which I can't escape. Writing things down like this is really quite therapeutic, and makes me feel an awful lot better.