Employment and Acoustic Neuroma

[craigy290272]

My wife had her AN diagnosed about a year ago. Prior to diagnosis, she was already experiencing tinnitus, hearing loss and vertigo. Whilst the tumour has not changed in the 12 months, the ability for my wife to maintain her current job and well-being has really been impacted. The symptoms have worsened and fatigue is also a considerable impact now.

As a result, we have decided to make changes. However my wife's current employer is not very supportive. We have been trying to reduce role and responsibility, accepting a lower pay grade to help cope with the health impacts.

I really would appreciate to hear from UK sufferers and their experiences of maintaining employment with an AN. what have you done and what support is there?

thanks,

[bypass]

Well, first of all it depends what the symptoms are which are giving her trouble. Hearing loss? Tinnitus? Balance? Headaches? Stress? And so on. We do not all suffer the same issues and even when we do different people will find different ones more troublesome than others and hence the ways of coping will also be different. For example, I coped with reduced hearing on one side by carefully planning where I sat in meetings and conferences, I reduced headaches by keeping very well hydrated. I also decided on Radio Treatment rather than surgery as I felt in my case it would maximise my chances of continuing to work - I was right and worked until normal retirement being promoted twice along the way. My story is here, I hope it might help her. anarchive.org/chris.htm

[Jerrycat13]

My firm who I work for have been very supportive. They even got a nurse to ring me to c if I was fit 4 work.

They have to oblige to help her with her disability. Go to doctor and get her to help.

[faysby]

I agree with everything bypass says. I was diagnosed a year ago and had radiotherapy in August 2019. I work full time. I had 2 weeks off after radiotherapy and worked reduced hours when necessary for the next couple of months.

Hearing aids have really helped my ability to cope with meetings, networking events and so on. My balance got worse about 6 weeks after treatment but has got steadily better - specialist physio advice and exercises and more recently yoga have all helped.

the biggest issue was I found it difficult to concentrate and whilst I would NOT recommend supplements to anyone, as we are all different, I have found acetyl-L-carnitine to be a game changer for me. Do your own research but there is scientific evidence that it helps in conditions like Alzheimer’s so it makes sense to me. Even if it’s a placebo, it works!

Oh and I’ve changed my glasses prescription a few times and have found computer glasses (as opposed to varifocals for everything) really helps.

Really important to try out lots of different things - tumour size, location, and any other health issues (even a cold) make a huge difference.

Good luck.