ANA Discussion Forum
General Category => AN Issues => Topic started by: Snoopy on December 05, 2012, 02:57:06 pm
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Well where to begin, around 3 months ago I woke up with horrendous vetigo with grew worse the following day with non stop vomiting, tinnitus and a fullness in my left ear. I called the doctor who came out to see me and he prescribed some anti sickness tablets and told me I had labrinthitis, tablets never helped so the next day I rang again and he then prescribed a different type of tablets which did calm down the sickness. 3 weeks later while the vertigo calmed down to a bouncy head type of feeling, the tinnitus was still there but the fullness had gone.
I went back to the doctors for another sick note as I was speeping pretty much all day and felt still quite dizzy at times, this doctor decided to give me the full works and then concluded I needed to see an ENT. 2 weeks later I was sat with the ENT who did some balance tests and sent me for an immediate audio and earing test (not sure if their the same), he said they were abnormal as I could not hear certain pitches of noise.
Then he mentioned the word tumour but they were 9 times out of 10 benign and ended our conversation with I am booking you in for an MRI scan to see whats going on. I had the MRI scan 1 1/2 weeks ago, whilst sat in the MRI scan waiting room I was reading my notes, this is where I saw the words (accustic neuroma). Now this was not a new word because I had researched my symptoms and google came up with this several times, but because it was so rare I never paid it much attention. I am currently waiting for a letter from the ENT for him to give me the results of last weeks MRI scan.
So over the last 3 months my symptoms are pretty much unchanged, full head feeling, when I walk I struggle to focus on things in the distance as they seem to bounce with the rythym of my walk, a high pitched squeal in my ear and sometime it feel like a motorcycle is riding the wall of death inside my skull. Luckily I have no pain or numbness anywhere, and I think my earing is not to bad although I am saying pardon to people a lot as I cannot hear what they say if they talk fast or not close by. I can say I dont have the very bad vertigo which I had at the beginning, its more of a constant sway when I move.
Some days are better than others, but I need to sleep and nap more than before as a feeling of complete tiredness comes over me, I am back at work and luckily I work two shortish shifts a day so I can nap inbetween to recharge. I have manged to ride my horse again but I am taking each day as it comes, sorry for the essay but its been such a roller coaster 3 months.
Thought I would mention I am from Shropshire England. x
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Hello Snoopy and welcome! Your story does indeed sound familiar as that's how a lot of us come to our diagnosis. I do remember my time waiting for that first MRI to come back was indeed a very stressful time. Please let us know how it goes and from there we can all try to help the best we can. Good luck!
Jay
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Hi Snoopy,
your story sounds familiar, but I hope your MRI is clear. I too am in the UK and I started a thread called treatment in the UK, if you click on my posts you'll be able to cllick on the full thread, as things tend to follow a different pattern in the UK. I chased up my MRI results after a week of waiting, I think I knew it'd be an AN!
If you are joining our club, so to speak, pse message me if you want to discuss more. Hopefully it will be just something else, like labyrinthitis, meniers etc.
Alison
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Thankyou so much for your replies, I suppose I am very lucky that within 12 weeks from the start of my symptoms I am getting somewhere with a diagnosis. I also hope the scans come back clear, and that its something less serious, but if I am honest every bit of research I have done keeps bring me down the AN path.
I am coping very well with it so far, the only thing I am limited in doing it riding my horses and when I have to deal with a stroppy youngster I need lots of help as I cannot stay on my feet when they push and shove me around. Work as been very good with me too and dont mind if I get behind with my work, and obviously I am sleeping much more if I dont nap in the day the wonky head is much worse and the tinnitus gets very loud.
I am 44 and always been healthy and very active with my animals, maybe thats why my family doctor took me seriously when I said there is something very wrong with me as the last time I saw a doctor was when I was a teenager (apart from jabs and the usual lady stuff).
Anyway must shoot off as its very frosty here is England this morning and my husband is taking me to the horses to chuck hay stacks out and fill waters, walking on icy ground holds a whole new sense of fear for me as I just cannot catch myself and stay upright if I slip.
Sue x
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Hi snoopy I'm also in the UK and your symptoms sound familiar but after finding my acoustic neuroma my sister got the same symptoms (exactly the same) and luckily enough she didn't have a tumour hers was menieres desease (not sure of spelling). When the MRI picked up my tumour the hospital phoned me within 2 days so hopefully if they haven't contacted you within 1 1/2 weeks it might not be a tumour. Good luck.
Alison have you had your tumour out yet?
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Hi snoopy I'm also in the UK and your symptoms sound familiar but after finding my acoustic neuroma my sister got the same symptoms (exactly the same) and luckily enough she didn't have a tumour hers was menieres desease (not sure of spelling). When the MRI picked up my tumour the hospital phoned me within 2 days so hopefully if they haven't contacted you within 1 1/2 weeks it might not be a tumour. Good luck.
Alison have you had your tumour out yet?
This is what I am also hoping :)
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Hi Pam,
how are you, is your eye op still lined up for December? Good luck with the op, I hope it helps.
I'm awaiting radiosurgery, (linac and headframe), the neurosurgeon at Bristol said he wouldn't operate on tumours unless they were big. But my treatment has already been cancelled once, in fact it should have been today! I'm just scared it may have grown too big for radio in the meantime. I have another date and am just hoping it won't get cancelled again as my symptoms keep on progressing.
Sue,
let us know how you get on. Balance has been my main bugbear, I walk like a drunk! But lets hope whatever you have is something other than an AN.
Alisonx
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Hi Alison sorry to hear you've had it cancelled. I've also had mine cancelled they changed it from this month to 10th January you get all set and then let down it's a pain in the bum. I can't complain about the NHS though because I've had so much done and cost them a fortune lol. Let me know how you get on please.
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Hi Sue,
I've replied to your PM, but the first one was blank as I pressed the wrong button, DOH! If you don't get it re PM me.
Pam,
Sorry your apt has been cancelled too. Hope January goes ahead. I'll let you know how mine pans out,
Alisonx
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How very frustrating it must be to have your procedures delayed!
Karen
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Here was me thinking no news was good news, I managed to get through to the ENT,s secetary (sp) who told me my MRI results were not even back yet. So either no one has even looked at them or they are sat on a desk somewhere, today was a bad day as well which did not help. I have been quite wobbly today and the tinnitus is roaring, and I have slept pretty much all of my spare time between work.
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I'm sending extra caring thoughts your way immediately!!!!!
Karen
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Hi Snoopy sorry to hear you've not your results I sometimes think these people just do their job and forget we patients are living on our nerves until we hear results. Hopefully you kicked their arse in gear.
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Not sure if I kicked anything into touch lol, I was far too polite and kept apologising for bothering them. Will give them 1 more week and then put my footie boots on, thankfully its the weekend and I can rest up properly. The tinnitus has calmed down since I got home from work, and not so wobbly. My job comprises of 368 children and cleaning up after them lol, and of course they are noisy just as children should be but this can really set off my balance problems and tinnitus.
Over the last few days the tinnitus is louder and changed to a more squealy high pitch buzz instead of the usual high pitch continuous squeal, oh the joys of it all ;D
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That's a lot of noise! Glad to hear some things have calmed down.
Karen
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Hi Sue,
I've replied to your email. Let us all know how you get on.
Thinking of you.
Alisonx
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Snoopy you are in my prayers. If it is an AN you have come to a good place.
I hope riding helps your balance-I always loved horses but haven't ridden in years and now probably couldn't get a leg over(I'm 65.)
Mil in the U.S.
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Thankyou Millie, horses have been a huge part of my life for so long I cannot imagine life without them. My balance is a bit of an hindrance with them especially when handling the young ones but as time as gone by my brain seems to have rewired itself on that score, I am only wobbly if I turn quickly. I have found riding quite easy with the balance issues as the swaying on their backs seems to match my own swaying so it evens itself out, although I do no fast riding (but never really went in for speed anyway) so no difference there.
The tinnitus if ok around the horses even though I am in the countryside there are always natures sounds to take my mind off it, and the sound of there hoove beats on the ground is bliss. I will be getting all my results back and a diagnosis on the 8th of jan, so not much longer to wait and hopefully get answers of why I feel so tired and the other above problems which come from "ear issues". x
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It is heartwarming to read that you can continue working with the horses as before in spite of the an. I think when you are doing something you really love, it spares your mind of some of the symptoms. I also think all the activity may have helped retrain your brain helping with balance and lightheadedness.
I remember reading on this forum that we become more tired than usual because the brain is working harder to process neural signals due to the disruption the an causes.
Rest when you can.