How long did you have to wait to be seen?

[Daisymeadow]

A month ago I was diagnosed with AN after being referred to ENT for what I thought was chronic sinus pain - turns out I have a 2cm tumour. I have just had a high contrast MRI and am going to be referred to Liverpool hospital from Macclesfield.

I would love to know how long the referral process took for everyone. I’m understandably feeling quite anxious as I’d like to know a lot more about my situation but I have no idea how long I’ll have to wait to see a specialist.

Am I looking at a long slow process with lots of waiting or do things get dealt with quite quickly? What was your experience? I know it’s a slow growing tumour, but my anxiety from all the unanswered questions is growing quite fast 😩

[Kobegeorge]

Hi,Understandably you are anxious x

When I had my MRI and was diagnosed I saw my consultant really quick I believe it was a couple of weeks

My AN is small so I have a yearly MRI I have ha 2 with no changes to the tumour

I do have hearing loss on the side where it is and am waiting for a hearing aid but that’s the worst I have had

I have just had surgery a couple of days ago on my septum to see if I’m blocking my nose will help the blocking feeling in my ear as it feels like it just wants to pop and it’s rather painful

But if they are the only things I have to live with, with having the tumour I can deal with them

I know it’s easy to say but try not to worry, hopefully you too will be on watch and wait

Kim xx

[Daisymeadow in reply to Kobegeorge]

Thanks Kim. This has proved to me I have no patience at all 😊 waiting is not going to be easy. So good to hear your tumour hasn’t grown

[Avarose2010]

Hi ,every where seems to be different. I am on watch and wait which is a slow poison to me but I understand why they don’t want to rush into anything.Had my last scan six weeks ago at the LGI hospital in Leeds and still waiting for them to tell me my results! I think when I was first diagnosed I was in shock , take time to come to terms with it . Take comfort that it’s not malignant and they will treat you before it gets too serious to your health. Kind regards Beverley.

[Daisymeadow in reply to Avarose2010]

Thank you. That’s what I keep saying to myself. I’m so glad it’s not malignant. It is a total shock. At the moment it’s all I can think about. I just wish I could have some answers. When I know what I’m facing it will be a lot easier to get on with life. Hoping your results are good news. 6 weeks seems like a long wait x

[Hidden]

Hi lovely, I saw a surgeon after about a week of being diagnosed but mine was a lot bigger than yours so that might have been why. The anxiety is completely understandable, it’s all the uncertainty. Once I had a plan I felt a lot calmer. Keep busy if you can, I actually think the waiting is the worst bit because our mind goes in to overdrive. Take care x

[Daisymeadow in reply to Hidden]

Thank you. Yes, I really just feel I need to know what I’m facing. It’s the uncertainty that has me stressed. Hopefully I’ll get an appointment soon x

[Kristyll]

I was seen a few times but did not get a diagnosis until 39 months later and I was just over five stone but that was many years ago and all is different and a lot better now so I hope all goes well. Different areas have their own times etc

[PLTM]

Hi there sorry to hear you've joined our 'club'. It is a waiting game unfortunately. I was told 18 weeks to wait between diagnosis and getting more info. I was too anxious so paid to see someone privately who then slotted me back into the NHS. It was worth it to put my mind at rest. Wheels move very slowly but I guess that does give you some reassurance that they're not too concerned. It's worth nagging to see if you can be brought forward but you have to get past the not so wonderful booking clerks and speak to consultants secretary or a Clinical Nurse Specialist. I found that if you keep reminding them you're there and anxious they might fit you in quicker. Try not to worry. You learn to live with your AN and manage the symptoms. Good luck on your journey. xx

[Gardener21]

Hello… it seems to be personal & different for everyone, but I do agree, the anxiety of having this ‘thing’ in your head is unbearable.. I was diagnosed in mid January this year basically from a hearing test in Specsavers which led to a doctor referral/MRI. I was passed to Kings London in mid February & after 3 subsequent telephone appointments I was operated on in late April & am now 17 weeks into recovery. My AN was 22mm & just pressing on my brain stem, the surgeon debulked 95% of it and I’ve a follow up phone call on Monday & a follow up MRI at Kings in early September. I was advised to watch & wait, which to me is doing nothing. I wasn’t a candidate for gamma knife due to size & position. Basically I followed up every phone call with an email saying I didn’t want to wait & would accept any surgery date at any time ASAP. I literally got lucky with surgeons, I had 2, and the covid situation was very less severe at the time. I think it’s worthwhile to keep in contact & keep your name popping up! Be persistent if you want the surgery.. good luck, I hope this helps! Xx

[flappers in reply to Gardener21]

And how are you doing now? I was thinking of you the other day, both of us in similar situations but I opted for w and w, ( next scan Feb) you went for it! How’s your balance etc now? X Lin

[Daisymeadow in reply to flappers]

Can I ask why you opted for watch and wait? Trying to get my head around the decisions I’m going to have to make and really value other peoples experience.

[Daisymeadow in reply to Gardener21]

Thanks for your perspective. I hope the recovery is going well. I think I feel similar to you in that waiting is just giving things chance to get worse. I’ll have to see what options the consultant will offer. Still waiting.

[Gardener21 in reply to Daisymeadow]

Recovery has been erratic, especially the first 6 weeks, but now I think I am almost back to my pre-op position. I was driving, only locally, after about 7 weeks and I regularly walk 3 miles a day, weather permitting.. I still have anxiety & will be glad to have the next MRI scan to see what’s going on in there.. I still have tinnitus which is worse if I’m stressed but I manage it with distraction. If you go for an op, be prepared for the pain! Don’t underestimate the severity of it, which I did! Be strong & determined and you will get through it.. take care, B xx

[flappers]

Hi, so sorry you’ve been admitted to the AN club, but you’ll find great support from BANA and other AN warriors! As others have said, everyone’s journey is different but we all seem to start off with absolutely the same worries, followed by further ‘scanxiety’ and horror of the wait…however, if I have found in this last year I’ve swung from ‘get it out’ to actually feeling positive about watching and waiting, as it Is slow growing and could stop. ( mine is 17mm, pushing slightly on brain stem but not causing any issues other than deafness and screaming tinnitus, numb ear and the odd twitchy lip) If we hold in mind the surgeon/doctor premise of ‘do no harm’, sometimes it’s better to do nothing. I don’t fancy the side affects of radiotherapy or surgery whilst I all managing the other symptoms, when the balance tips ( pardon the pun) I’ll feel better about intervention. I found hypnotherapy useful in helping learning to live with the tinnitus and the worry. You’re at the start, breathe, find ways that suits you to manage the worry, get the email of your consultants secretary and make friends with them, ask about the position of the AN, which nerves it is impacting on, and the impact of the three options available. Ask if you will be under a specialist multidisciplinary team. And keep asking questions to the people on here and the British Acoustic Neuroma Association Facebook page ( ignore all others!) is great. It’s NOT malignant, it won’t spread,it’s blooming nuisance and scary at first for sure, but you’ll adapt. Be nurturing and kind to yourself. And breathe 💋😎🙏🏼

[Daisymeadow in reply to flappers]

So helpful. Thank you. I really hope your symptoms don’t get any worse and growth does stop. I do keep telling myself it’s benign and finding things to be grateful for is really helping me handle the diagnosis