I'm new to this and just joined and I'm worried silly about this. I'll be getting a call from the consultants at addenbrookes (Cambridge) over the next few weeks apparently. I have had complete hearing loss in my right ear for the last 7 years (whilst living in France). Just had an mri scan and the consultant at WSH immediately called me in to give this awful news. I feel so gutted. My sister has tried to be positive for me as she actually had an AVM 9 years back in her brain and went through a terrible ordeal with surgery for its removal. But, all I read about is bad things for my AN. Has anyone get any good things to tell me? Thanks.
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Russwebb
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Hi thereSorry that you've had to find this site but you will find a wealth of different experiences here that can offer you some support.
For my part I am also under Addenbrookes hospital in Cambridge and I have found the team to be absolutely fantastic. I have a 23mm AN which I've just had treated via daily radiotherapy (Nov - Jan). Although consultant appointments have sometimes been via phone the Covid pandemic has not delayed any of my treatment. Calls are not rushed and you have plenty of opportunity to ask questions so my advice here is to be prepared for the call and write down everything that you want to cover beforehand.
I was given the option of elective surgery or radiotherapy and I chose the radiotherapy route initially. I may still need surgery if the radiotherapy doesn't stop the growth but I decided to try this route first.
Addenbrookes use a system called My Chart where you can register and then view all your scan results, consultant notes, appointment letters etc which I found useful to refer to, so if they don't mention this please ask.
When discussing treatment options they provided extensive information sheets for you to review in your own time.
On physical appointments you get an auditory test before your appointment so that your hearing levels can be monitored.
The only thing they didn't support or manage was anything regarding my balance but my GP was quick to arrange some physiotherapy appts here which I attended for a few weeks before doing the exercises at home instead. Mention on your consultant call though as they may be able to arrange instead of GP.
On a practical level if you do need to visit Addenbrookes leave yourself plenty of time. The place is a vast rabbit warren and departments can initially be hard to find. You can only go in on your own (at least this was the case a few weeks ago) so my advice is to try and get a lift and get dropped off at the main outpatients entrance. This is level 2 (even though you aren't going up any stairs) and this should be the floor you need.
Hopefully now that you are expecting a call this will happen sooner rather than later so that you can focus on the way ahead. Good luck and please be reassured that (at least with my experience) you will be in very good hands
Hi smiffy, thank you so much for your reply. My god so when you say daily therapy, how did your work deal with you disappearing for a chunk of every day for 3 months? They don't have any choice I suppose, do they! Weekends too? I will ask about their mychart system if they don't mention it. You don't mention how you're hearing was before and after your treatment? Also what options have they given you for cochlea implants, hearing aids etc now that your treatment is 'over'?
Do you know why it is that the only option when they do surgery is to go through the eardrum? It's like all hope of the hearing ever being repaired is a lost cause right from the start. Although I have come to terms with the fact I'll never get it back (only lost in right ear) and above options are the only way forward after treatment.
I have actually been to addenbrookes before. In 2009 I was treated for prostate cancer via a robotic prostatectomy. This has been very succesful since and no return of the cancer has occurred for that. My psa is practically non-existent. So I do feel very confident about this hospital already. I'm 60 on 20 March so sounds like I'll be in the middle of any treatment around then.
Hi thereI did reply back but looks as though it hasn't gone through so apologies if you get this twice! My radio was 30 sessions spread over 7 weeks. No weekends and I got Christmas and New year off. Originally I was scheduled for a single larger dose and I think that this is usually the norm. My AN is affecting my facial nerve though so my treatment plan was revised to smaller, frequent sessions instead.
My hearing has deteriorated steadily over the past year and I'm aware that it's never going to be better. It has again got worse after the radio. As I may still require an op if the radio doesn't work I've got to live with this for now. Hearing aid options will be discussed once I know which way things are going which will be around 6 months time.
Hi there. Yes I too have been having extreme dizziness and balance issues. I took a terrible fall on my head snd am getting an mri with and without contrast. They want to rule out accoustic neuroma but I have a very long history.
It’s such an awful shock isn’t it? But I guess the greatest ‘good thingI’ to remember is that it is a benign tumor, will not spread to other parts of your body and the more know it’s there and can offer treatment. Of course it is still UTTER PANTS and we can get a bit scared about the things we read, remember often those who are part of forums are because they have struggles and need support, many have treatment or no growth and neatly go on without being too impacted. You’ve had some wonderful advice in here already about things to ask and about the hospital so I’ll just say, remember to breathe, remember you are not alone with this, BANA are a really helpful resource and we’re always here to have a ‘chat’ Lin x
Hi Russ, I’ve got a 4 cm x 2.5 cm AN. The good news is that AN are generally benign, although they can become cancerous it’s very rare for that to happen. I’m awaiting surgery on mine which is frustrating due to the complications involved and the demand on my hospitals ICU is delaying the treatment timeframe.
Thanks Steve. When were you diagnosed and have you been given a date for the treatment? Did you have a choice as to the treatment you could have? Thanks.
I had my MRI on 19.01.21 and was informed on the 22.01.21. I then had a private consultation on 5.2.21 and a NHS consultation. Due to my age (40) and the size of mine I was given two options. I leave it or surgery. To which I was expecting from some research that I had already done. As a result of the size of mine, I will lose my hearing on the right side. I am also likely to have some facial palsey to. Not what I wanted to hear but it’s something I need to emotionally accept, it’s far better than the alternative of leaving it.
I do not have a date set yet. Just been told it’s likely to be in a few months time April/May June due to the demand of my hospitals ICU, other hospitals that do this surgery may have a ICU that’s in a better position.
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