2.5cm A.N has just been found - Facial Palsy appt

[Idris2023]

Hi everyone,

I'm in a bit of shock, last Friday, I receive a phone call from ENT saying my MRI showed a 2.5cm acoustic neuroma was found and I've now been referred to a multi disciplinary group at the Q.E hospital. The first appt they've made for me is with a Facial Palsey doctor..... but I have nothing wrong with my face.... all I can feel is 'pressure' in my ear.

Does anyone know why I've got this appt..... I cannot see any phone number's on the letter for me to contact to ask any questions.

[Hlondon87]

Hi Idris

This is most likely to see if their is any signs of the tumour affecting your face. When i went in for my first appointment this was the first thing they checked. I hope it all goes well for you.

[Idris2023 in reply to Hlondon87]

Thank you so much ... the responses are certainly helping me calm down x

[flappers]

Hi Idris, try really hard not to panic, I would contact the brainstrust or British Acoustic Neuroma association ( BANA) for support and guidance. I suspect you’ve been put in touch with the specialist to talk about the position of your AN and possible choices and outcomes should treatment be needed. Whatever they suggest for you, please know you’ll be in very good hands and there is loads of support and help. I had stereotactic radiosurgery on my 25mm AN last June and am currently on a fabulous holiday in Thailand. Once you get support for the terrible shock of it all, and adapt to any symptoms you may be having, it all gets much easier. Good luck and definitely contact one of the charities that are there to help demystify it all for us. Lin

[Idris2023 in reply to flappers]

Thank you for responding with such a positive outcome for yourself. Certainly helps me think more positively.

[bypass]

It's an unusual approach BUT an AN or its subsequent treatment can often cause facial palsy. At that size you will normally be offered treatment. Do make sure that you consult with both a surgeon AND a radio-surgeon as both will tell you their approach is best but each have advantages and disadvantages.

[Leodo]

hi, facial palsey is a common side effect of an AN, keep a close monitor on everything as the side effects are often worse than the actual neuroma which can be treated and is normally benign. Eye closure can also be affected. Report any symptoms imeadiatly. Sounds like you have caught it quite early but make sure things keep moving quickly, it will probably be radiotherapy. Hope this helps, keep asking loads of questions, best of luck.

[Bad1]

Hi Idris I understand that you have had quite a shock which will take some time and support to process. AN an are generally slow growing and benign ie grade 1 tumours. As you state the team at QE are an mdt and it is not clear from why you have stated why you would see facial palsy team in first instance, however they may have there reasons which should be explained to you. Call the medical secretary on 0121 301 4511 mon- thurs only and request a face to face initial consultation with specialist team as not knowing is the most stressful part . Be prepared and bring someone with you. Take a screen shot of your mri scan and write any questions down.