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Acoustic Neuroma Support

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I need a quick diagnosis either way, after advise please.

Knitter67 profile image
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Hi. I had sudden onset tinitus in my right ear in March. After 3 weeks of ignoring it I went to the Dr's. I had drops to clear the wax, which I had to stop after a week due to excruciating pain, and then steroid spray. Because I had continued pain in ear/ right hand side of head, numbness on right side of face, echo/full feeling in ear and tinitus my Dr did an urgent referral to check for AN. That was started in May. Just heard after delays and errors of not looking at my drs expedite letters that the referral was rejected by ENT! They just think I need to check for vertigo and hearing aid. Neither being symptoms apart from maybe slight hearing loss with ALL the other symptoms. I also get tired and wake up at night with pain on my whole right side.

I have just found out my life assurance with critical illness runs out on 31th July 23 and it does cover AN.

I am having a Specsavers hearing test this morning and seeing my Dr who has been amazing. Another Dr just focused on the tinitus and said its probably menopause. I'm 55 and had a full hysterectomy march 22!

I'm going to ask for a referral for an mri but I know it needs to be the right type, so will probably need to see a private consultant too.

I hope its not an acoustic neuroma but if it is please can I get a diagnosis before the 31th July! I'm at Southampton. Any advise please? Thank you.

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Knitter67
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Knitter67 profile image
Knitter67

So my basic specsavers heating test on their ipad says my heating is within normal range.

I am trying to think of everything that my symptoms could be including blocked middle ear or trigeminal neuralgia. I had a very bad episode of TN about 10 years ago and this isn't the same but with my high blood pressure it could just be triggering the feeling of earache, fulness and headaches. Now I'm off to the Dr's to discuss these and the failure of the ENT referral. I'm so sad at the state of the NHS.

flappers profile image
flappers in reply to Knitter67

I’m so sorry you’re having this battle. My only symptom was sudden onset of tinnitus in one ear, my gp got me an urgent mri within a few days and I was called with result two days later ( a 12mm AN) i have no idea how you can get an mri and diagnosis within the time frame however I would contact your insurance and say investigations have started with symptoms there and ask if you would still be covered if you have an mri and diagnosis after 31st July? Have you told your gp the urgency of this? Ask them to note possible AN on your file with referral for mri? You can pay privately ( about 400 I think) however no idea if you can get this within the time frame? Of course you are very unlikely to have one of these but I absolutely understand your worry about this. Good luck! Lin

Knitter67 profile image
Knitter67 in reply to flappers

Thank you. The Dr did mark it urgent but unfortunately it sat in our local hospital for a month before being rejected and passed to another local hospital. My Dr call the consultant and wrote two expedite letters. They say in the wrong place too. I am trying carbamazepine for my trigeminal neuralgia to see if that is the cause and not AN. 3 days on a small dose and the pain and numbness on my right side/ ear has improved but I still have tinnitus and am getting headaches. I won't get this resolved in time so after paying for the insurance for 22 years I hope it is not diagnosed as AN. Plus I don't want AN. Trigeminal neuralgia is bad enough as a ticking time bomb.

flappers profile image
flappers

how are you doing Knitter67? Really hope your symptoms are easing a bit. To try and ease headaches and tinnitus make sure you are very well hydrated, eat healthy protein snacks and keep hydrated ( again!) and try find some good distractions, doing things that relax you and you love to do. And rest. Whatever the cause, stress and worry on top makes everything worse. Headaches are not a direct symptom of ANs but the worry we feel causes tension that does. Massage and breathing and stretching helps with that too. Let us know how you get on x Lin

Knitter67 profile image
Knitter67 in reply to flappers

Thank you. I ended up going to A&E yesterday as I felt terrible. They did bloods and ct scan of head and ear. Ear pain, tinitus, worse head pain, nausea, speech problems. Scans were OK so good. Blood initially showed low sodium but second one was in range. And I had been drinking lots. Today I still have tinnitus in right ear and pain. They have written to Dr's to chase ENT again. My ENT referral has been handled badly. Hopefully I will get an appointment soon but clear scan results may delay it longer. I take enough BP medication, I don't want to be constantly taking pain meds too. The tinitus wouldn't be so bad if I wasn't in pain.

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