After surgery for an Acoustic Neuroma in June 2011, I was told that I had got a Facial Nerve Neuroma. Has anyone else had this experience?

[AmSally]

Apparently 1:100 patients having this surgery are found to have Facial Nerve Neuromas. Sometimes it is not clear at MRI scan if the tumour derives from the Acoustic Nerve or the Facial Nerve as both may be involved. To preserve my face, the wonderful surgeon left some of the tumour, which seems to be behaving. It would be great to hear from anyone who may have longer experience of this.

[kinsale123]

My surgery was more than a year ago, and I was warned by the surgeon that the tumour was not totally removed, and would continue to grow. I am continually troubled by hearing loss, and imbalance, as well as more limited mental abilities. I am 85 years old..

[AmSally in reply to kinsale123]

Hi Kinsale123, I am so sorry to hear about your changes. I am 57 years old and have found problems with clumsiness rather than balance. My MRI in October showed the remaining tumour to be "involuting" (that is what a uterus does after childbirth), so I can only be hopeful. Have you had an MRI to reassure you yet? I am far less troubled by the hearing loss and other problems when out and about. Are you mobile? Have you been offered a cross-aid to help with hearing and balance?

[kinsale123 in reply to AmSally]

Hello Amsally,

To help with hearing I have a small hearing aid in the good ear. For balance, the local authorities have given advice about walking and exercise and now I manage quite well with a walking stick. My dear wife is about all the time and gives all the necessary support. I hope your progress is good in time to come;

With every good wish. - Keith.

[keithzx12r]

I went for surgery for AN in Sept 1987 at the age of 50. Once the surgeon had got into my head he found two further neuromas which he removed. Unfortunately this left me with a paralysed face and swallowing difficulties on the left side. Over the years the facial nerve has regenerated a certain amount, my facial droop straightened up and the lack of movement is really only apparent when I smile or try to raise my eyebrow on that side. The swallowing isn't as bad as post op but is still troublesome - deffo cannot eat spicy food though, just keep coughing it back which is a shame 'cos I like curries etc. Good luck going forward, Keith

[Obie]

Hi AmSally,

How are you. I'm new here and relatively new to the acoustic neuroma community. I have a daughter who has been diagnosed with AN. I am very curious about your facial nerve neuroma because I never really heard of it [until now]. I've been researching AN for about four months. Did this facial nerve neuroma impact your hearing in any way? How has your progress been?

-Thanks, O