Hi , sorry to hear that they have delayed your operation. It’s so hard to wait and act like nothing happened, especially when you have three kids. I waited to see my consultant for over 2 month just to find out any details about the size of the tumour and what treatments they going to propose. It’s the worst to wait.
I’m in Wales Cardiff. I had a meeting with the consultant on 3rd of February and they told me that they will operate at the beginning of April but didn’t give me exact date yet.
Thank you for your reply, it really is the worst time to be expecting important appointments or surgery as every borough handle things differently.I will jus be patient and wait xxx
Good luck for your operation and I hope for a speedy recovery for you . Xx
I also got two kids 8 and 2 year old. So I know how you feel.The home schooling taking my mind of things tho lol. To make all this waiting a bit easier I will be doing more research and get a second opinion if cyber knife or gamma knife treatment could be done as it less invasive . My surgeon told me as the size of my tumour and the position they don’t recommend radiotherapy but I’m not sure if they meant cyber knife or some other radiotherapy.
The size of my tumour is 3.3x2.8. But the interesting fact I feel quite well , apart from slight numbness in the right side of my face and last few months I’ve noticed my hearing got slightly worse. I have no other symptoms.
So your tumour is much smaller then mine . May be worth researching if any other treatment will be suitable for you. 👍
Homeschooling is defiantly not fun especially with a toddler in the mix wanting attention. My oldest actually asked me yesterday what they are going to do to my head. Out of nowhere? I never usually talk to them about it as I don’t want to worry them, I froze I didn’t know what to say. Not my finest moment on mothering. My consultant told me that there wasn’t really any other treatment as it’s got too large for radio. I want bob out ( I have named him bob the brain tumor) I don’t like to think of the havoc he is causing up there.
I have good days and bad days. My hearing is definitely worse, my balance is rubbish but it always has been and my numbness is definitely spreading but as you say I can get on with my day to day forgetting about it all. It’s only when it is quite (which isn’t very often) that I can hear the tinnitus.
Second opinion are always good, I think for peace of mind more as you know you have covered all basis xxxx
I haven’t really spoke to my daughter about it , as you say don’t really want to worry her. She knows that I need to fix something but don’t really know the details. I think kids best not to know. Shame you have been told that nothing else could be done apart from the surgery. But never mind you will be fine! Hopefully they will give you the date soon. Good luck .
Next week I will be getting a second opinion. So will post what the other specialist say. Xxx
Hi Bullpenn I know how you feel! My AN is 25mm and my operation was scheduled for 19 Jan. All was going forward, I had my pre-op and blood tests etc only to be told that it was to be postponed due to Covid. Since then my symptoms have worsened so I contacted the hospital (UCLH) to chase for a new date. They arranged a further MRI and ct scan and have now given me a provisional date of 2nd March.
I have now had to retire from self employment because I can’t work with the symptoms.
As a quick aside, my vestibular schwannoma was discovered 2 years ago following head scans for throat cancer which resulted in a total Laryngectomy. Due to the seriousness of the Laryngectomy the AN was largely ignored and when it was eventually followed up again it had grown too large for any gamma ray treatment so surgery is the only option.
To cope with the wait I just try to be positive - which seems rather trite and unhelpful! I don’t often feel positive but try and appreciate the little things - with your young children it will be hard work which can be a great distraction and perhaps offer those treasured moments if you can appreciate them.
I also cope with the delayed surgery by understanding my post op prognosis. I am told that my symptoms will not improve post op but they will not worsen (apart from complete deafness) once the trauma of the surgery has settled. My symptoms being partial deafness in my right ear, tinnitus, dizziness, headaches, balance issues and nausea. This is my prognosis only and I won’t speak for anyone else. So if it’s not growing what’s the rush...... very controversial and my view only!
For me ,I also find it helps to research as much as i can so I have a complete understanding of all aspects. So I know the issues, procedures, risks, possible complications, recovery journey and all.
But most I understand that I am not alone or the first to suffer this bloody thing. This is my first post so sorry if I have rambled on. This is a great website which has given me much comfort.
Bullpen it is tough at the moment and Covid is an added complication and we will come through it. Great Big hug to you! X
Thank you for your reply, sorry it’s taken me so long.What a journey you have had. That must have been truly a terrible time.
A family member of mine has had there surgery cancelled as well. I can’t think of anything worse especially when you have isolated for it.
Fingers crossed your op goes ahead in March and you are enjoying your retirement (well as much as you can with being stuck at home)
You are right to stay positive and I do try the majority of the time as the kids keep me very busy and work plus I am studying in the evening getting an accounting qualification. I would just love a date as it’s pushing on my brain stem and I’m vain I want to preserve my facial nerve and I worry the longer it is left the more stretched it’s getting.
Take care of yourself and all the best for your operation xxx I hope you have a speedy recovery and you never know in Sox months you might want to come out of retirement xxxx
Hi, 1250GSI see that you have had to take time out of work with your symptoms. I am also currently on sick leave with dizziness, balance problems, tinnitus and hearing loss plus the fatigue! My acoustic neuroma us around 1 cm X 7mm and I'm currently on watch and wait.
I had to leave my role as a lecturer as was struggling.
How are you finding not working, I have days where I feel very guilty that I can't work, especially when people have had surgery and returned to work.
Hi Bob200 sorry that you have had to step back from your lecturing - don’t feel guilty, we are all individuals and the symptoms vary greatly between us.
I personally don’t feel at all guilty, I have worked all my life without breaks until I had my laryngectomy and returned to employment thereafter. I’m 62 so I feel I’ve done my shift! But moreover we didn’t choose to have these tumours!
I think as time passes you may well be able to manage your symptoms better particularly the tinnitus and balance issues. There are some videos on YouTube that show some exercises to improve balance issues. Also please don’t hesitate to see your GP if you think you might benefit from some psychological help - I did!
Your watch and wait may go on for a long time so you may well adapt to life with the symptoms and find that you can manage to return to work. I know I have been impatient but now understand that my body’s healing moves at its own pace.... I have learnt to be more patient. For me the greatest asset is a positive attitude.
Best of luck and remember you are not the only one to have this and be inspired by those that have preceded you.
Thanks for your positive response. My specialist nurse suggested some phycological help so this seems the way to go. Bit of a shock to leave the workplace for the time being as only 46 but you never know what the future may hold.Hope you get sorted soon, take care x
Bless you, I'm Kings too, was due pre-op in January, but was told they are doing extreme emergencies only. Pre-op is rescheduled for April. Hopefully things will move soon and you can move forward xx
I have a 4 cm x 2.5 cm AN. I can not speak for all hospitals but the QE currently are not able to facilitate AN surgery due to the risks involved and the demand on the ICU. I’ve had conflicting information from both private and nhs consultants from under normal circumstances 2-3 week wait but due to Covid 3-6 months wait, to also being told 2 months wait. It’s tough times but one that needs to sit tight on.
Just an update really on my op that was scheduled for 2 March ——- it has now been postponed again! They haven’t given me another date yet - it’s a case of don’t call them they will call me. Very disappointed and frustrated.....
His Steve, I am under kings. I managed to speak to the nurse last week and got some really good information. Surgeries started up again at the end of January and they are also doing them at Harley street too.
It all get examined every week and I am very near the top so fingers crossed it some time in the next 6 months.
It’s all very strange times. My hospital the QE still can not accommodate me, however they’ve found two hospitals approximate 90 miles away from me that can get me in within the next 4 weeks. Onwards and upwards from here. Hopefully you won’t have to wait to long.
It’s The NHNN in Queens Square. I am advised that all but emergency surgery has halted. Apparently I am top of the list when the theatre’s open again. They are hoping it will be late March early April - fingers crossed!
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