When should we worry about symptoms changing?

[Anon30]

Hey everyone, first post here and I’m just curious about your thoughts before I bother my nurse. She has recommended this page in the past. Sorry it’s so long but wanted to give a quick background.

I had surgery to partially remove a tumour last year, as it was pushing on my brainstem. Weirdly enough my hearing was fine but I was incredibly dizzy and started getting horrific headaches.

Post surgery, I have facial numbness in places, a weird squinty eye thing 😂 dry eye, right side hearing loss fatigue and some balance issues. I’ve worked incredibly hard to not mope around and have managed to get back into a sort of normal life, thankfully. Even if it is a bit different to before. I last had a scan on the remaining tumour in August23.

My query is that over the past few months I’ve been getting more and more tired, more headaches and headaches that are more severe and frequent. Brain fog and forgetfulness. I’m also lightheaded and dizzy at times. I had similar issues over Christmas but this feels different. At Christmas me and my nurse agreed that it was probably because I was doing so much which made sense. I had a short few months later on where I was feeling better but since June I’m just not feeling well. I’m due to see my consultant in November but my next scan is not until next year.

Can I ask for a scan before the appointment in November, if nothing else to put my mind at rest? Should I get hold of my nurse again to let her know how I feel? Is this just normal now?

Thank you for any advice!

[flappers]

It’s so tricky when we’re used to focusing on the positive and working so hard at trying to be back to our normal selves… however, you have gone through a huge surgery and living with the impact of that will mean that you have to be extra kind and attend to yourself more. As silly as it sounds, ensuring you stay very very well hydrated can help with balance/dizzy/headaches and eating high protein little and often ( no intermittent fasting) can help with fatigue. You are still healing. Absolutely contact your skull base nurse for advice and help around symptoms if those things don’t help, but my guess will be they’ll say the same about remembering you are still healing in there. There is a brilliant support group on Facebook the British Acoustic Neuroma Group plus Brainstrust offer one to one peer support too. You’re not on your own with what’s happening and those who might be further along can offer tips on managing the dry eye etc. Sounds like you’re actually doing fantastically. I think having increased symptoms at certain times is something we all go through, but your skull based nurse is there to check in with when needed and you can ask to speak to the consultant too. And don’t forget support groups! Take care and let us know how you get on, lin x

[Anon30 in reply to flappers]

Thank you, that is very helpful. I think sometimes I forget that I’m not super human and will flag sometimes. The fatigue is crazy though, so my physio has given me some good advice about doing things earlier in the day and resting a bit earlier in the afternoon when I’m getting tired. I find after a day at work I’m just wiped out and I feel terrible that I don’t have the energy to do anything but then try and force myself to do something productive and then feel worse the next day . It’s a never ending cycle but I am learning to say no now 😂. I’ll get there, I suppose it’s all just learning how to look after new me, and forgetting what old me would do!

[Alison_L]

Hi Anon. I’m surprised you’re not on the books for a one year MRI. Yes, contact your nurse, tell them what you’ve said here, and ask for an earlier scan x

[Anon30 in reply to Alison_L]

Thank you, I will give her a call x

[StrugglingSpouse]

Definitely ask for an earlier scan! Does sound like a change in situation!

[Anon30 in reply to StrugglingSpouse]

Thank you, I have asked so fingers crossed we can arrange it!