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Acoustic Neuroma Support

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A 9 month roller coaster.

johnwalter profile image
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Back in February 2017 I woke up one morning and found I was deaf in one ear. I went straight to the doctor which led to an audiology appointment and then an MRI. Alongside this other symptoms developed particularly pain in the teeth and jaw and poor balance. I was treated with steroids and painkillers. At the end of March an AN was confirmed. I quickly linked into a support group and became aware that my pain symptoms were unusual, my GP also felt there was something other than a slow growing AN going on. I tried going back to work as a music teacher but after two lessons with support I realised it was not going to work and I started the process of retiring 3 years early.

The pain came back in another month long bout of illness. A check up with my hearing therapist uncovered I was now totally deaf in the right ear. She wrote letters and prompted another MRI and meeting with consultant. The result of this was that the tumour was growing rapidly and an operation was scheduled mainly because of concerns about the speed of growth. After a fairly stable month balance symptoms increased rapidly and I had a couple of weeks being very unwell. Surgery was postponed and then another MRI was scheduled at short notice.

Straight after the scan I went in to see the consultant and he shared his amazement with us. The AN had shrunk! In 20 years he has only see 3 similar occurrences and his best explanation is that a cyst developed alongside the tumour and this caused a lot of damage as it grew rapidly. The cyst then burst and was reabsorbed.

So I am back on watch and wait with a very small tumour and no need for intervention. Just need to get my hearing aids sorted out and do the vestibular rehabilitation exercises . I am back at work in a very part time admin job, I am buying a van and converting it to a campervan and playing as much music as I possibly can. I am glad all this prompted me to retire as a teacher because I was no longer getting the same pleasure and satisfaction from the job as I had in the past.

I have always had a very positive outlook on live and although I have been through some very dark moments I am now sure I can adapt and enjoy life from this newly imposed perspective.

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johnwalter
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anan88 profile image
anan88

Well what a turn-up for the books, as they say, and well done! How marvellous! And it sounds is though a cyst bursting could actually be behind it all. Now you mention all that, stuff falls into place a bit with mine AN. It was cystic, 3 cms, the symptoms came on fairly quickly, and I felt very ill quite suddenly (metallic taste, quivery eyes, lips, weird smells, tinnitus, balance dreadful, headaches, sickness, shooting pains etc.). So I had surgery quickly after diagnosis and then Gamma. Maybe I should have just asked the surgeon to lance it and stitch me back up!!!

I'm so glad you have taken the opportunity to change your life for the better. Go for it, and congratulations! Yeehah!

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