Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Unusual Acoustic Neuroma

Bluebell79
Posted by

Hi, I am totally new to this site or any forum to be totally honest. I am 39 and in September 2018 my husband, 42, was diagnosed with a very large acoustic neuroma. He had been experiencing symptoms for only a couple of months; dizzy spells, headaches. He was very quickly sent straight to Addenbrooks and we were lucky enough to see the top surgeon in Europe for surgery. He underwent extensive brain  surgery in November 2018 however it was unsuccessful. He has a large brain haemorrhage and the surgeon was only able to remove around 40-50% of the tumour. The size that remains is still very large. They also believe it may be faster growing than these tumours usually are. He is scheduled for 6 weeks of radiotherapy in June. We have been told that they don't normally do radiotherapy on a tumour so big but given the nature of the difficulties of his surgery it is our only option at the moment. They are unable to shrink it but are hoping to stop it growing. Whilst it is totally benign it is very invasive as it pressing on his brain stem and cant be left to its own devices. Everything has happened so quickly for us with barely time to process or acknowledge emotions. My husband fortunately is coping very well as he is naturally a very laid back guy so is taking it all in his stride. I am trying to keep us and our 2 very young children going as well as us both working and the chores or everyday life. Is anyone else experiencing or has experienced a similar thing? I am trying to roll with the punches and not think too far ahead but at times it does all catch up with you. I wasn't even sure if i was "allowed" to join Macmillan as it isn't Cancer (thank heavens) but it is an unusual and frightening situation to find ourselves in. If anyone has any advice or can relate please do get in touch. Im feeling a bit lost. Thanks.

latchbrook
Posted by

Hi and welcome to the online community

I'm sorry to hear that your husband has been diagnosed with an acoustic neuroma. It must be a very difficult time for you both.

It's good that your husband is coping well but I can understand that it could be hard for you working full time, looking after the children and your husband along with the household chores.

I haven't been in the position that you are, as it was me that had cancer, but could I suggest that you join the carers group which is a safe and supportive place to discuss your worries and get support.

If you're looking for other people with acoustic neuromas you could try typing that into the search bar in this group to see if there are older posts discussing this topic. I've also found this information for you which you might not have seen and might find helpful

If you want to ask any specific questions about your husband's condition you could post your question in ask a nurse and one of the specialist nurses will aim to respond within 2 working days.

Sending a supportive ((hug))

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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Bluebell79
Posted by

Hi latchbrook thank you so much for your reply. I hope I wasn't implying a "woe is me" vibe . It is tough but obviously harder for those with the diagnosis. Thank you for the information i will definitely look into that. To be honest any help at the moment is so useful. As the partner is so important to find an outlet outside of the family home so that I can be at my best for the 3 people who need me the most. Thanks again for your advice. Hope you are ok with or after your cancer.

latchbrook
Posted by

Hi

You certainly weren't implying a "woe is me vibe". I admire you for having the strength to cope with everything. I hope you'll consider joining the carers group as it's a very supportive group and I'm sure you'll get lots of positive suggestions from others who will understand just how hard caring for someone with cancer is.

I'm currently waiting for the results of a biopsy so keeping everything crossed that it's nothing to worry about.

Remember to look after yourself too!

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?