Making changes at work. : Hi All, I’m... - Acoustic Neuroma ...

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Making changes at work.

DH32 profile image
DH32
7 Replies

Hi All,

I’m just looking for any of your experience in changing roles at work to accommodate your AN.

I’m on watch and wait with my first year scan results due on Xmas Eve. My symptoms are fairly stable but they have increased slightly over the last 12months. Bit more tingly and pain on the AN side of face, lightheadedness when tired, tinnitus and hearing seem to be the same. Initial scan showed 8x5x5 mm AN.

Anyway - I need to pass a hearing standard for my job. I passed at last medical but I’m worried I’ll fail in the near future which will leave me needing a new role which I don’t really want. I’m about 18db hearing loss away from a failure.

There is an opening on the horizon which is a role more suited to coping with my AN symptoms (no hearing requirements, better shifts for fatigue management etc etc) but I’ll need a promotion to get it and there’s competition for the job.

The complicating factor is if I gain a promotion but not that specific role I might end up in a role that is worse for me than now. It’s all a bit of a gamble and the worry around it all is causing me a lot of anxiety.

My question is - should I be going through all this additional stress when I’m already worried enough about scan results or should I just be focusing on my health? Also if anyone has experience of employers accommodating the needs of those with ANs can you share it please?

Sorry for the long post any advice from those experienced in living with these little joyful lumps is appreciated.

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DH32
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7 Replies
flappers profile image
flappers

As unlikely as it might feel now, I would say you’re really likely to adapt to the symptoms you have, and given the size of your AN, it’s unlikely treatment will be recommended, unless in the very rare event it grows a lot over a short period of time. The key is the results of the second scan, to assess that. Personally, I would put all your focus into really attending to yourself, do the things that help destress you and bring you joy. Go for a role that you would have gone for anyway, if it is something you’d like to do. You will adapt to the gifts of our little squatters, and if you do need treatment way down the line, then it’s likely you’ll benefit being in a role where single sided hearing loss isn’t an issue. I did have treatment as mine went from 12mm to 25mm in a short time, but we really can live peacefully and positively and successfully, as it brains adapt. Personally I think it’sa miracle that mine grew as I have such a massive brain you’d think there would be no room!!!! Remember to breathe, stay hydrated, ( helps the dizzy) eat little and often, high protein, and live you’re very best life. It’ll be okay x Lin

FERNBROOK profile image
FERNBROOK

Totally agree with Flappers. The key is not catastrophising what may turn out to be a situation where observation only is the outcome. Symptoms can be managed. My role was in Pharma sales involving considerable travel, presentation and the usual pressure stress. Before surgery I learnt to accommodate the symptoms and continue in the role. My Company were brilliant providing the right home equipment in the form of extra computer monitors correct seating, foot rest etc alongside time out to cope with fatigue. I am aware not all companies are as sympathetic. It's tempting to attribute every problem to AN and be self limiting. Very often a diagnosis can plateau and require no further intervention other than monitoring which is still active treatment but not as invasive obviously. Hopefully, this will be the case for you. All the best.

Ga131078 profile image
Ga131078

Focus on yourself first and most importantly, secondly it takes time to live with the side effects from the AN, I've been living with mine since 2009, job wise am still doing the same crappy job plus depending on how many side effects ur suffering from will also play heavenly how quick ubre-adapt to ur job, I worked full time 4nites a week after my Op working nights in supermarket now am down to part time 2nites a week just over time it's took a massive toll on my well-being fatigued and tired all the time so that's y I just do 2nites now, also you will beat urself up over stupid things as well, how you finding ur mental health coz that's a big one as well, but as said look after u First and when ur ready to go again then look at how ur job fits in with ur need's....

Peace and Love ✌🏻❤️

DH32 profile image
DH32

Thanks to you all for your replies. My dilemma is that I love my role now but rotating shifts aren’t good for me. As with most of us when I’m tired my symptoms are worse.

I fear being forced to move roles as my hearing drops. My employers know about the AN but as it appears to them to have no effect on me they don’t understand so I don’t think they’ll be forthcoming with reasonable adjustments etc etc. I think I’ll just be moved out to another role (that I probably don’t want to do).

I know it’s all it’s and bits and I’m probably overthinking things but the uncertainty around my health, career, future plans is bothering me at the minute.

Thanks for your kind words and advice - I think I need to look after me first and foremost. 👍

MichRosa profile image
MichRosa

I’d just like to say that once you’re diagnosed with a brain tumour you are, in the eyes of the U.K. government, classed as having a disability so your work will be obliged by law to put into place any reasonable adjustments you feel you need. Do you have a union?

DH32 profile image
DH32

hi, I wasn’t sure over this as I have very minor symptoms and at present can carry on as normal? I do have a union, might be worth speaking to them.

MichRosa profile image
MichRosa

there’s some great info online about work, I think it’s the brain tumour charity. They do suggest telling your workplace about your diagnosis, and probably worth informing them it is classed as a disability. Get them forewarned and protect yourself.

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