hi - i thought i would post a little about my acoustic journey (so far); it may help some one else feel less alone, and get it off my chest too!
i had radiosurgery with linac (in uk) july 2010; i had fluctuating hearing loss, tinnitus, facial numbness, facial twitching, headahes and balance probs before treatment.
i found the actual treatment hard - the headframe was not fun - and i don't think i appreciated how big a deal it would be. immediately post op i had headache, nausea, tiredness, worse facial twitching and worse balance which settled over a couple weeks. i also had prolonged numbness of my scalp and forehead from the pins, decreased ability to raise my eyebrows and scalp sensitivity - slowly improved over 3 months.
about 2 months post op, i started to have true vertigo and worsening balance, and increased facial twitching.
after 4 months i had fairly sudden decrease in hearing with worse headache, worse tinnitus, trigeminal neuralgia and fever. mri showed tumour swelling - my ent/neurosurgeon had not seen fever before with it. so before i could start steroids i had an enormous battery of blood tests and ct scans to look for all sorts of ghastly causes of fever (none of which were found). i felt ill with the fever which persisted for 2 1/2 months, until steroids kicked in. hardly had i started to feel better, when i had more fever and headache although this episode was only a couple of weeks. meanwhile i continue to have worsening balance issues, and my hearing has not come up, and i have developed hyperacusis in my AN ear. my mri shows some cerebellar inflammation and meningeal inflammation around the tumour (which the neurosurgeon says is seen sometimes).
i am on amytriptiline for the trigeminal neuralgia which is helping; having vestibular rehab ongoing; have white noise generators to try to decrease my sensitivity to sound; and use a stick which helps me walk more quickly and enables me to look up from the floor.
my doctors believe that my fever is being caused by the dying tumour. i am told that most of this (facial twitching, headache, trigeminal neuralgia) should improve by 2 yrs post op - although my hearing could get worse/stay same/improve, and my balance will likely reach a plateau but that it should not interfere with my quality of life significantly, as long as i do the vestib rehab.
if i was working now - i would be off sick. as it happens i am currently off work to spend time with my son (who has aspergers and challenging behaviour) though the plan is i return in september 2011.
so - that is the story so far! reading other people's accounts of what they have experienced has helped me hugely over the past few months, and i hope that mine will do like wise for others.
vikki
