New Diagnosis of Acoustic Neuroma

[Nikzstew]

I was diagnosed with AN 10days ago after suddenly losing my hearing in my right ear 18 months ago. I have had a long wait to see ENT specialist and originally diagnosed with otosclerosis until my MRI scan showed a 2cm AN. When the consultant told me I presumed it would be a wait and watch game but he said this was unlikely and I would probably need treatment. I'm not really sure what happens next I was initially relieved as I now know what my symptoms are. I have spent the last 2 yrs thinking I was going mad feeling dizzy and sick intermitently, constantly tired with waves of fatigue which when bad can knock me out for a day.

Since my diagnosis I have noticed a feeling if fullness and pressure in my right ear, not being able to get comfortable at night with discomfort at the back if my head. I'm 52 and put my headaches down to hormone changes...now I'm not sure.

I have been referred to a specialist who treats AN and the hospital audiologist to try and improve my hearing as my current hearing aids aren't the best and I'm struggling at work and meetings are just a nightmare.

I waited for 12 months to see ENT after losing my hearing and I'm really worried I'm going to have a similar wait to see the specialist.

Any advice would be greatly recieved has anyone else had a similar experience.

[whitefishbay]

Sorry you have had such a wait. A friend on this forum told me to go to A&E and they diagnosed Sudden Severe Hearing Loss which was diagnosed as an Acoustic Neuroma after and MRI. My AN is @ 6mm so I am on watch and wait. NHS is so busy the waiting is long but I'm sorry you haven't been seen by the ENT dept. Hearing aids are not perfect by any stretch. I work in two schools and I am always saying 'what?'. Listening to speakers in a hall is hell. Luckily kids do not care if you are deaf. If things seem to be really on a downward spiral I would try to see a good GP or I would go to A&E at 8am and try to see someone as things seem to be getting worse. Sorry for your troubles.

[Nikzstew in reply to whitefishbay]

Thank you for your reply and advice much appreciated.

[Karbob]

Hi I waited 14 months to see ENT. Who after mri I scan diagnosed 1.2 AN. Since then he hasn't seen me again although he did say I needed a me I with contrast then would see me again. That didn't happen staff said my go had to do scan(which the GP did)and he had to refer me back to a different ENT department. I have just received an appointment to see a.specialist consultant team ENT at Salford For March. Think cos it isn't urgent but you need to see a consultant that deals mainly with brain tumours that are we are unfortunately(or very fortunately cos we don't have a brain tumour that spreads) able to wait to be seen. By March I will have waited in total 25 months. I'm sure you will much quicker cos they have referred you on properly. Good luck

[Nikzstew in reply to Karbob]

Thank you for your reply. I feel quite lucky after hearing about your wait. It is all such a shock at first but hopefully now I know why I have the symptoms I can adapt my life accordingly. Good luck with your appointment

[Lorosco62 in reply to Karbob]

Wow! 25 months. I recently had mri at Salford. It took 6 mths for me to get that appt. I was told results could take up to 18 weeks. I think that's long enough to be in limbo. I know they are slow growing, but the damage they can do could be life changing. I worry for the changes in my eyes. The waiting is the worst. I wish luck for March. Keep is posted.

Lozx

[Karbob1 in reply to Lorosco62]

Yes. Seem to have been refered to a private ENT(by GP) to speed things up. But ENT specialist then gave me diagnosis of Acoustic Neuroma and didn't do anything I had to keep getting back to them for the contrast scan and they then decided that my GP could do the scan and refered me back to GP(eventually). Who has now refered me to Salford. So on right path now and have an appointment. So all fine. I don't have too many symptoms and I can deal with them.

[HBS68]

I was referred to ENT before my MRI scan for hearing loss in one ear. Waste of time. They just passed me on and referred me to Neuro Surgery department as soon as they diagnosed an AN. There is an ENT consultant as part of the multi disciplinary team looking after me but it is led by my the Neuro consultant. All consultations have been in the Neuro department. I am now on a watch and wait annual MRI with the NA growing 2mm last year.

[Nikzstew in reply to HBS68]

Thank you, I'll keep an open mind and wait to see the specialist.

[Pinkrose1]

Sorry to hear you have AN too but glad you have been properly diagnosed as things should move quicker now. Mine was missed too and for years had symptoms you describe and all the time it was put down to TMJ by my doctor and dentist, it was only when an audiologist sent me back to the doctors again and said something wasn't right and then i was sent for MRI. Once i had the results things moved much quicker. (although covid and new diagnosis of bowel cancer initially put the surgery date back otherwise it would have been much quicker). So I think now you are on the list for treatment and not wait and watch you won't need to wait long hopefully. All the best and let us know how things go

[Nikzstew in reply to Pinkrose1]

Thank you for your reply, it's good to hear other people's experiences and relief to know you are not the only one. Ibhope you are on the mend now and things are a little easier.

[Kristyll]

your GP can expedite your ENT apptd and now know what you are dealing with and can get the appropriate treatment. It’s no joke waiting so I suggest you ask your GP to bring this apptd forward as it is causing you too much worry having to wait so long x

[Nikzstew in reply to Kristyll]

Thank you

[flappers]

Hi, which hospital specialist team have you been referred to? I would try not to worry too much about the wait, as now you’ve been diagnosed it is very very unlikely you’ll have such a long wait. It’s likely your scan will be discussed by a multi disciplinary team. Most like to rescan 6 months from the previous to see if growing but if treatment is decided as the best option, it can be all pretty quick. I’d email the secretary of the specialist to say you’re really anxious and ask when would it be likely you’ll be seen/spoken to? In the meantime, brainstrust and BANA offer really helpful advice. I was seen very quickly initially, then on watch and wait for 6 months, only a little growth but then at 2.5cm agreed time for radiotherapy which was way way way easier than I imagined, and 7 months on, I’m having a fab month in Thailand!! You will get through this and you’re not alone, find the support groups and remember to breathe. It’s will not kill you, it may not grow, treatment is available and you’ll get through it. I was similarly age to you at diagnosis, so went through menopause at same time as managing the AN. Thank goodness for hrt I say!!

[Nikzstew]

Thank you for your reply. I have been referred to the QE in Birmingham. Good advice I will have a look at BANA and the brainstrust. I already feel so much better reading other people's experiences and the advice is really helpful.

[KawasakiZ650]

Sorry to hear about your AN and the crazy long waits you have had! The waiting is definitely the worst!I'm currently undiagnosed but just had my MRI today. I lost my hearing about 2 months ago now and got my letter through for MRI which was a 23 week wait, luckily I have private healthcare so I invoked it and literally got an appointment in 2 days, which is awful in my opinion but hey.

Hope you get to see the specialist quickly and you can get your hearing sorted, I know what you mean about meetings at work and being in the office, it's horrid not being able to hear and having to explain to everyone all the time! Best wishes, take care 💕