Regression of Symptoms 2 years after AN surgery . Has anyone else regressed ? I was about 80% back to normality until 6months ago

[MelTre]

I have regressed back to maybe 9 good days a month without any symptoms... the rest of the month I have dizziness, balance issues, headaches and migraines . I can’t find any cases that have had regression . I’m wondering if anyone on our forum has regressed . I have the 2 year follow up MRI tomorrow so we shall see . But I’d love to hear if anyone else has had these difficulties

[AHK45]

Sorry to hear this. My brother had AN surgery about 4 months ago he is almost constant pain ( face and forehead) which he describes 8 out of 10. He has been on Dihydrocodeine for last 4 months. Neurosergeon has not said why but thinks it could be the fifth nerve. Still on dehydrocodeine no real answers from Neurosergeon.

[MelTre in reply to AHK45]

I’m so sorry to hear that. I was lucky not to have pain like that . Does he have any other symptomsw

[AHK45 in reply to MelTre]

Not really no other symptoms, apart from facial nerve damage and hearing in left ear.

[Tabbycat]

Hello MelTre

I belong to a BANA (British Acoustic Neuroma Association) support group and two of our members have had re-growth of their tumours since surgery. One has had Gamma Knife since and that seemed to stop it growing, but haven't heard about the other guy - we don't meet in person anymore (because of COVID-19) and I'm not on Facebook.

Seems to me you need to get in touch with wherever you had your surgery - consultant or specialist nurse. What did your follow-up MRI show?

Wishing you well,

Tabby

[MelTre in reply to Tabbycat]

Thank you. My second follow up MRI came back totally clear so that’s a good thing . My surgeon says it has nothing to do with him now and it’s down to my own doctor . She’s arranging a referral to a new neurologist to see if they can help.

But on a good run at the moment 2 weeks without any symptoms and no migraines since Christmas Eve !!!! Woohoo

Thanks for taking the time to reply , I hope the members you mentioned are doing ok .