How were you told about your/your lov... - Acoustic Neuroma ...
How were you told about your/your loved ones brain tumour diagnosis?
Please select all that apply:
Dear Shannon,
None of the above apply. I found out the diagnosis by letter written to my GP and ccd to me. The letter written to me with the information about my diagnosis arrived the next day. It was quite a shock to find out in this way and not at all sensitive. I had been told before the scan that it was 97 % certain that I didn't have a brain tumour.
I have since learned that you are entitled to be told privately one to one and have a family member with you, which I would have much preferred. The way it was done has always rankled with me, particularly as I was dealing with a recent death in the family.
I am glad to be able to feed this back as I feel it is an area that needs to be looked at.
Many thanks
Sheila Riley
If it is any consolation, I was getting frustrted with being bounced around and having multiple MRI's so I diagnosed mine on Google. When the NHS referred me to a specialist they did confirm in person, with a family member with me.
Hello Shannon, I was invited for a second mri scan, didn’t know why, had no idea about my AN. The person who called me for my scan told me, walking across the car park to the mobile scanner, that I had a tumour. I then spent 30 minutes in the scanner, in a complete state of shock. I asked him afterwards if I’d heard him correctly. He said yes and was ‘sorry to be the bearer of bad news’. He then wrote acoustic neuroma on a post it note and told me to google it and not to tell the consultant he’d told me. I’m still haunted by it, absolutely shocking way to find out.
None of the above . I was told in a very matter of fact way following an hearing test that I had a brain tumour and would need an operation and referred. 11 years later I’m still on WAW and not grown. However when i left my consultant I was in a state of shock , had no idea what a AN was .
Dear Shannon none of the above applies. I was called at work on my mobile and told very little info from my GP. Just the name of the tumour and that I would get a letter with an appointment with a consultant. I did write later on and complain and advise that this needed reconsidering telling people in this way and Head of Surgery did agree. However since diagnosis there has been no understanding or even interest from GP so seems primary care no longer exists and all this talk of looking after mental health hasn't filtered to my GP. Thank goodness for support groups and platforms like this.
My wife was diagnosed with hydrocephalus and was showing signs of dementia. Upon the diagnosis she was rushed to a different hospital and it was there I was taken aside by a consultant and sensitively given the full diagnosis and told that the hydrocephalus had been caused by an acoustic neuroma tumour. She was fitted with a VP shunt two days later and the dementia signs disappeared almost immediately.
None of the above - following an MRI scan 'just as a precaution' as various symptoms I had were not responding to any treatment, I was told over the phone by a GP that there was a tumour and I needed to see a consultant asap and have an enhanced scan. I was in the car at the time, waiting for someone I had just taken to hospital for their appointment! I felt rather numb, almost as though it wasn't happening to me. I have since had surgery, superb care from the hospital, follow up phone calls to check on me and face to face appointments when necessary. I have not heard anything from the GPs...........
None of the above, I received a phone call from my GP two days after an MRI ( which has been ordered by another GP s as I’d mentioned consistent persistent loud onset of tinnitus in one ear)He was nice in his tone and said unfortunately it seems you have AN, it’s almost certainly a benign tumour and within 10 days you’ll have another scan with contrast and be referred to a specialist team. He didn’t check where I was or who with ( I happened to be in a friends garden so luckily wasn’t on my own) I’m glad he rang rather than a letter and that it was so quick.
Hi Shannon,I agree with Sheila that sadly none of the above apply to me. I was told I had a lesion in the brain and from its location it was most likely a benign tumour but would have to wait to see someone else for confirmation. That took 4 weeks of hell.
At no stage was I made aware that I might have to prepare for anything unpleasant. No provision was made at all and this was private. I go for Gamma knife shortly and haven’t even received a leaflet and am still waiting for a nurse from my private health insurance company to call me.
Hi Shannon, sadly none of the above apply to me either. I was phoned on my mobile whilst at work. Told I had an AN but given no information on what it was. Told I would get a letter to see a consultant. Of course in this world you google it and the first thing that comes up is ' brain tumour'. After much panic, upset and paying to see a private consultant I got more info. Not once was I offered a support mechanism or counselling I had to source all that myself. I did make written complaint and suggestions to dr to handle things like this differently which they did accept and apologise for insensitivity but the damage was done. Took a long time for me to accept things and GP has never once helped or supported even now. Disappointing. Hope this helps. Take care x
None of these apply. I read about my diagnosis online while I was checking my health records. Then I googled, obviously, and for about a minute I had this fear that it's something fatal. Two days later my neurologist called to inform me about what they had discovered. A month later I received a letter from the neurosurgeons. And six month after the diagnosis I finally saw an ear specialist for 15 minutes. This process could have gone better, but I've been relatively calm about it considering the circumstances.
