Sharing experiences

[Rupert25]

Hello thought I would just share my experience as it may be reassuring for some. I was diagnosed with a vestibular schwannoma (AN) by my local hospital then referred to Addenbrooke’s in November 2018. As the tumour was quite big I was offered the option of either surgery or fractionated radiotherapy. I did not want invasive surgery so I opted for 6 weeks (week days) of radiotherapy at Addenbrooke’s. July/August 2019. The staff were amazing and very supportive at every point of contact. Apart from the impaired hearing and tinnitus I had very few immediate side effects. As time has gone on different effects have presented- increased deafness, tinnitus, facial numbness, some balance issues and a strange occasional puckering up of my face on the left hand side. This happens most when bending over the sink in the bathroom to wash my face - apparently some people get it when cleaning their teeth! Though a bit frightening at first - I know what it is and know it will clear in about 5 mins. My most recent MRI in September 2021 unfortunately showed growth by a centimetre to 2.9cms. After some initial worry of facing surgery the team at Addenbrooke’s met, discussed my case and are going to wait to see what the next MRI in March shows. They are pretty sure the swelling is caused by cysts within the tumour taking on fluid as a reaction to the radiotherapy. I can feel the tumour has swollen- I feel increased pressure rather than headaches and increased facial numbness. I suffer from insomnia quite badly which doesn’t help but am sure I am in the hands of the best possible medical team so will wait on their decision and already have an advanced appointment set up for a face to face next March. This isn’t pleasant but minor compared with so many other health issues. Good luck everyone!

[Wounded101]

Thank you for this post, my last MRI was2 years ago and I feel pressure in head occasionally, spoken to consultant but they have a very long waiting list so my scan could be anytime from January onwards

[Rupert25 in reply to Wounded101]

Just think positive and hopefully the pressure may also be from cysts taking on fluid rather than actual tumour mass. I am sure you are the same as mr that some days are worse than others and keeping myself busy seems to take my mind off it. The advice from hospital is to take ibuprofen to bring down the swelling- it works sometimes. My big worry is bad headaches caused by pressure on the brain stem - I have been told to contact medical advice ASAP in that case because of possible hydrocephalus. Not had headaches as such just pressure. I have had 3 MRIs since treatment and another planned for March - great service from Addenbrooke’s.

[IA786]

Hi RupertI am really sorry to read about your condition, I actually had my tumour removed, it went really well for me at first, I recovered from the surgery really quickly, I did not have any pain and headaches ,but I did have a few issues with my eye and facial paralysis in the first year,unfortunately it has worsened and 2 years after the surgery I have tinnitus, eye issues,face tightness and I have balance issues and a feeling of toppling over, I now have epilepsy and unfortunately a almost permanent headache and memory issues.

I really hope you will be okay and wish you the best 🙏

[Rupert25 in reply to IA786]

Thank you for your reply- I am sorry to hear about your condition and how after the elation of the surgery going reasonably well things seem to deteriorated quite a bit. Such a disappointment for you. I hope you have plenty of support around you - someone to listen - even if not fully understand is so important. This is why forums like this are good to share with others who know and experience many of the issues involved. Be strong and keep positive x

[IA786 in reply to Rupert25]

You take care and stay blessed

[Lois_Howell]

Hi Rupert, I had surgery over 16 years ago and was fortunate that the facial nerve was preserved. Side effects I was left with permanently are total left side deafness (ear drum was removed), incompetent left tear ducts, tinnitus and facial numbness/tingling, all of which i've got used to and have minimal to no detrimental effect on the quality of my life. We just have to 'get on with life' and not sit at home wallowing in self pity. You're right when you say that keeping busy takes your mind off things. Unfortunately, a couple of months ago, I had to admit to myself that the numbness was extending to parts of my face it hadn't previously reached. I was aware of the possibility of regrowth but it hadn't crossed my mind that mine would as I felt so well. I've had no headaches or dizziness and balace issues are minimal and not worsening. For a while I did nothing but convince myself it was just my imagination and that as it was benign it wouldn't harm me anyway. Then I developed dull ache, throbbing sensations behind my left ear and some mornings I was unable to breath through my left nostril. So, I plucked up courage to contact my GP. Things have moved very fast; I have an MRI scan tomorrow. Fingers crossed I have an over active imagination.

Stay positive, you didn't mention your age? I was 54 when operated on, coming up to 71 now.

[Rupert25 in reply to Lois_Howell]

Hi Lois I am also 71 in just two weeks time. Hope everything goes well with your MRI. I don’t know where your hospital is but I am at Addenbrooke’s and have total faith in those wonderful medical staff. Life has a way of working things out Lous and it’s up to us to adapt to what we are dealt - a theory which unfortunately often slips my mind in those long lonely dark hours of the night!! But always better when I get up and get going in the day.

Let me know how you get on x

[Lois_Howell in reply to Rupert25]

thanks, i shall though i don't know how long it will be before i get the analysis of the NRI, pretty quick i anticipate if the last three weeks are anything to go by.

I'm not getting into a negative mind frame until i have no choice and hopfully that won't happen!

[Rupert25 in reply to Lois_Howell]

Try to keep positive x