Everyone has a journey to go through, some easier some not so much... Sept 2019 I found out I had an acoustic neuroma, which I discovered because of my hearing loss. August 2020 did another MRI and it is growing, unfortunately. It grew a couple of mm all around. I had an appointment a couple of days ago in Southampton to discuss the SRS (radiotherapy) and decided to leave it to be done after Easter next year. But now I am SO worried and confused if I should do it earlier in the year because of the rate that this has been growing. It’s very upsetting. I have booked a holiday to Greece 10-17 April, so the plan was to do the MRI in March and treatment as soon as I come back.
What about if I do the treatment before this trip? What about the side effects? Has anyone experienced really bad side effects, and for how long?
at the moment my balance is completely fine and facial nerve (my main worry) too, just have 35% of hearing on my left ear, which is ok but of course I don’t want to lose those 35%! Now my tumour is around 22.2mm x 20.7mm. My worry is the rate growing and if it’s over 25mm I might not have the chance to do the radiotherapy... and brain surgery is not on my plans at all.
can someone let me know please? I am so lost...
Andrea - UK
Hi AndreaUK and a very warm welcome to the online community
I'm not a member of this group but I spotted that your post hadn't had any replies.
When you're given the opportunity to decide when and what treatment to have it can be a very hard decision to make. Could you speak to your consultant again to go through the options and to understand the implications of delaying treatment as against starting it straight away?
I think that SRS stands for stereotactic radiosurgery but I'm sorry if I've got that wrong. I typed 'stereotactic radiosurgery' into the search bar in this group to see if it had been mentioned by anyone else in previous posts but drew a blank. I have found this information for you on possible side effects.
When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Hi Andrea, I also have an acoustic neuroma. In March 2020 it was 4.5mm, in October 7.7mm. I have been advised to have radiotherapy which I intend to have as soon as it’s available. I’ll keep you updated. I hope this helps.