Cerebellar degeneration

[esbjorn]

Anybody else being diagnosed with cerebellar degeneration following acoustic neuroma neurosurgery? Had neurosurgery in 2018 and already some 9-10 months following surgery and rehab, my balance started worsening. Had MRI follow ups with the neurosurgery centre which dissected my tumour but nobody looked at the status of my cerebellum until my GP ordered an independent MRI this autumn. This autumn was 4,5 years post surgery and I have had an increasing numbers of falls, fractures and other injuries.

Shockingly the neurosurgery centre has just said the degeneration has nothing to do with the acoustic neuroma (or indeed the surgery). And will not treat the new diagnosis (even as I am still their patient). Anybody else?

[Karbob]

Hi have you thought of asking your GO to explain findings and get them to refer to right people. Good luck. Karen

[Paul469]

Sorry to hear about your experience. I had a cerebellar stroke as result of surgery to remove AN. Spent 15weeks in hospital and am now having rehab therapy. Balance slowly getting better but no change to facial palsy.

[musicman5]

I had a 4.5cm AN operated on in Sept. 2021 and also a regrowth treated with Gamma Knife 6 months later. I'm still dealing with balance and ataxia issues. On my last 2 MRIs an area of encephalomalacia was noted which is a type of degeneration. Check to see if that has been noted on your MRIs.