Acoustic neuroma and employment

[Weebettywilson]

Hi I'm looking for some advice and guidance from you all, having been sent to the ED three weeks ago with suspected stroke then after an MRI i was told I had a AN. My employer put me on sick leave instantly and my gp told me I'd be unable to return to work with my symptoms which are dizzyness and facial numbness until I have been seen by the specialist. Im having anxiety and fear I may loose my job waiting on my referral, thank you.

[edthecat140]

Can I ask a few questions? Does the dizziness prevent you from doing your job? I would get a different medical doctor and get "permission" to return to work. Your general practitioner should not be preventing you from going to work unless you can't do your job safely with the dizziness. The facial numbness, while disturbing should not be an issue. Also, is FMLA an option.? Margie

[Weebettywilson in reply to edthecat140]

Thank you edthecat140 for your reply. I have spoke with my gp and been given a clearer indication of what will follow, thankfully. I will be given another scan in 6 months and in the meantime hoping to get back to work with medication to manage my symptoms much better outlook. Hope you are well.

[edthecat140 in reply to Weebettywilson]

I am too am dizzy with my AN and I sometimes struggle at work but I work night shift and it is quiet from 10pm on. I do some vestibular balance/training exercises that I found on Youtube to help with the dizziness. Perhaps that would help you as well. I glad you have a plan to return to work. Let me know how things go for you. Stay safe, Margie

[Tabbycat]

Hello weebettywilson

This must be such a difficult and worrying time for you.

I remember when I was first told I might have an AN by the ENT consultant at my local hospital all I heard were the words 'brain tumour'. I was numb at first and then terrified. I had to wait for 4 months to see the skull base team in Leeds and that was back before Covid - 19. I was still working then, teaching one to one in a primary school, and there was no suggestion that I should not continue. However, at that point my symptons were quite mild - single side loss of hearing and feeling quite tired some days.

I agree with edthecat you need to get a second opinion. Acoustic Neuromas are quite rare and most people have never heard of them. My GP told me I was the first patient she had had with one and had to do some research so she could help me. And the same thing happened when I went to see the audiologist - she had written a paper about the condition, but I was her first real AN patient.

I don't know whereabouts you are, but if it's the UK there's an organisation called BANA (British Acoustic Neuroma Association) whose website is full of reliable information and support. I found them to be a real godsend when I was first coming to terms with having an AN.

Stay safe,

Tabby

[Weebettywilson in reply to Tabbycat]

Thank you Tabby at for your reply it's comforting to know that others can relate to my situation. I've spoken with my gp yesterday and been given a more positive outlook so I am able to return to my employment which I'm thankful for. Hope you are well.

[Tabbycat in reply to Weebettywilson]

That's great news! What kind of work do you do? Whereabouts are you?

Stay safe and well,

Tabby

[Weebettywilson in reply to Tabbycat]

Hi Tabby at I'm a support worker living in Ayrshire,whereabouts are you?

[Tabbycat in reply to Weebettywilson]

Good morning Weebetty,

I guessed from your name that there might be a Scottish connection! I'm in North Yorkshire and I'm a retired primary school teacher. How's the weather in Ayrshire? We've got bright blue skies and wall to wall sunshine here, but it was quite cold first thing - such a shame that we can't go out for the day and enjoy it!

What kind of support work do you do? Are you visiting people in their own homes or do you work in one place? How's the dizziness and numbness today?

Stay safe and well,

Tabby

[KimmiP in reply to Tabbycat]

I agree, do your research. IF you choose surgery, you want to make sure your surgeon is one that has experience with this specific surgery. I am in the Dallas, TX metroplex & there are two main docs here...I loved my surgeon, but later found out the other doc used less invasive procedures. It usually takes two surgeons, the one removing the AN & a neurosurgeon that opens & closes you & monitors brain functions during the surgery. Be sure the specialist has experience removing ANs & of the procedures the neurosurgeon uses to patch you back up(ie, titanium mesh screen or plaster piece to seal off skull).

Or, depending on your specific case, size of tumor & age, you may decide to wait & watch, as they are usually slow growing.

Hang in there & do not make any rash, impulsive decisions. Good for you for reaching out!

Kim

[Weebettywilson in reply to KimmiP]

Thanks for the reply Kim lots of good advice. Hope you are well, stay safe.

[Kristyll]

I think it’s best to know what you are dealing with first and don’t see why you should lose yourjob

[Weebettywilson in reply to Kristyll]

Thank you I agree however I am staying positive to get on the right medication and get back to a job which I love, stay safe.

[Tabbycat]

Haven't heard from youy in a while WeeBetty - hope you are well and safe?

[Weebettywilson in reply to Tabbycat]

Hiya Tabbycat, I'm okay thank you hope you are too. I've just been busy being back at my work and just getting on with things