Help please

[TomandJerry2]

Hi I had accoustic neuroma removed in 2023 but since am still deaf in 1 ear and headaches,spasms and tiredness are debilitating.I have 2x children 1 with autism and am finding life difficult.Most recent scans have shown no regrowth and am waiting to see a neurologist.

[StrugglingSpouse]

Not easy. Do you have enough support? Practical, emotional, and financial?

[Najklj]

Truly difficult, but the good news is that the tumor is not regrowing. I had my surgery done six years back, I too have lost my hearing in one ear. You can reduce and manage your symptoms through medication and exercises. Surely your neurologist can help you in this.

[flappers]

Hi, no wonder you’re finding life tricky, you have a lot to juggle, whilst all the time still healing from a significant trauma, both physical and emotional. The first thing that might help is to start being truly kind to yourself. Recognise that there is a lot of healing still going on in your bonce, and ensure you focus on doing very basic self care things. Make sure you drink plenty of water throughout the day, eat good levels of protein, little and often if that’s easier, don’t go too long between protein snacks. Join the brainstrust maybe, who offer wonderful hypnotherapy sessions weekly, and one to one support with a peer supporter who has been through the same. I’m guessing you’ve not been able to really focus on yourself at all so trying to find moments when it’s about your well-being is important. Eventually we do adapt to the single sided deafness, and other little ‘gifts’ but I’m sure you can live a way more comfortable life with some support, and a few changes. I find a low dose of amitriptyline at 8pm helps with the neuropathic pain, yoga for relaxation and stretching, looking at the sea etc are my ways… you need to be your own best friend. Do your friends and family know you’re struggling? Speaking to others with ANs/ who have had treatment, might help. It does get better but you might need to seek out what works for you. Speak to the neuro about the headaches etc. It may be directly linked, or may be because you need an overall reset in terms of true self care. Lin 💐 ( oh and did I mention stay hydrated!)

[Zhaleh_TBTC Administrator]

Hello, I am so sorry to hear you are finding things so hard and it's very understandable to be feeling this way, given all you are managing. Our Support Team are available should you need to talk things thorough and find out what support, both practical and emotional, is available to you. I would also suggest you make contact with our lovely Children and Families Team. They can look in to specific support for you with regards to your little ones. Please know you are not alone and there is help out there for you. Our Support lines are open Monday to Friday 9-5. Both the teams I mention can be contacted on the Support Line number: 0808 800 0004, or if you find it easier, you can start a live chat via our website: thebraintumourcharity.org/l.... I hope this helps.

[TomandJerry2]

This looks great,but I live in Southern Ireland

[flappers]

I’m sure they can give you support still, I currently support someone in Ireland.. via the brainstrust. There are some really helpful online support systems, face to face one to one( virtually) etc. You are not alone in this, reach out the the brain tumour support resources. X