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Which "symptom" of Acoustic Neuroma causes the most disruption to your life?

106 Voters

Please select one:

16 Replies
IANCADDLE profile image
IANCADDLE

Daily headaches post surgery.

sheeba68 profile image
sheeba68 in reply to IANCADDLE

i am new to this site , but i too suffer from headaches daily, had gamma surgery in jan 2010,

and find the headaches are getting worse,

any advice anyone ?

Marauder profile image
Marauder in reply to sheeba68

I had GK in May 2013, my balance is worse since. I've never seen anyone comment on that?

No headaches or palsy or dry eye. Hope no more symptoms.

Kristyll profile image
Kristyll in reply to IANCADDLE

I have permanebt balance disruption still after many years post op

Moosejaw1944 profile image
Moosejaw1944

Imbalance issues are my biggest problem by far! The complete loss of hearing in one ear has been imoproved with Phonak bi cros, but the balance issue is awful. My ent said that, at age 68, the door may be closed to any improvement through vestibular exercises.

Any help/suggestions would be appreciated; this came suddenly one day last April. I was fine one day, the next all of this!

daveonhudson@yahoo.com

dgrinev profile image
dgrinev in reply to Moosejaw1944

Daily yoga helped me lot to deal with my balance issues. There ara yoga asanas, which PT people advise to use to deal with the so called 'core stability'.

anan88 profile image
anan88 in reply to Moosejaw1944

I'd say that improvement can happen until you die. Tell your ENT to read the current literature! Mine is still improving 5-6 years post-op/Gamma. Really, do the exercises (ignore the initial sick-making effects of the exercises!), do a bit of meditation, walk as much as possible, keep on pushing through the discomfort, and read 2 books by Doidge: "The Brain that changes Itself" and "The Brain's Way of Healing", both easy-to-read books that will change your view entirely. If you can get your ENT to read them too, s/he might stop making such sweeping, negative statements. Honestly, the experts (most of whom have no practical, first-hand experience) can be so tiresome, especially if you take any notice of their advice to give up hoping. You can improve!

BuzzyGary profile image
BuzzyGary in reply to anan88

I had my AN diagnosed mid-40s so can't comment directly, but my physio told me that the exercises don't do much good if they don't make you feel a little bit sick and dizzy.

Walking frequently is a massive help for me, before and after diagnosis. If I don't walk often enough I can feel quite rough.

maggikw profile image
maggikw

Fatigue! I was very active before radiosurgery in January 2011 but the fatigue became a problem 2 months post treatment. It is slowly improving.................only for other symptoms to fill it`s place!!!

I'm really surprised tinnitus is not on the list. It can feel overwhelming at times, particularly at night, making it difficult to sleep & leading to disabling tiredness the next day.

robert77 profile image
robert77 in reply to

Hi Judy, I too suffer from tinnitus and agree it should be on the list. In my case the ever present noise disrupts what I can hear in the good ear.

zeekay profile image
zeekay

I have voted other which is to do with what I call a "heavy head" and vertigo. but on a daily basis it is imbalance which I am now accustomed to and does not cause me any distress.

anan88 profile image
anan88

My tinnitus is constant, and can be very intrusive (wonder why it's not on the list?). Keeping the fatigue at bay makes coping with all symptoms much easier. I found taking up meditation/mindfulness helps enormously. My husband says it's noticeable when I don't do it, that I get short-tempered, tired, dizzy, more wobbly, sleep worse, complain about tinnitus more etc. Even doing 10 minutes/day is good.

Bluenorm profile image
Bluenorm

Hearing & Tinnitus

BuzzyGary profile image
BuzzyGary

For me, imbalance has always been the toughest thing to deal with. If I don't exercise my balance every day I can start to feel rough - head swimming, nauseous - and until around 3-6 months after surgery it was to the point of it becoming debilitating at times, but now it is much, much milder.

The positive for me was that after only a few weeks from surgery the imbalance had improved to the point where it was better than before the surgery. I just had to put up with nausea until then.

Facial paralysis was psychologically hard to cope with but complete paralysis only lasted a few months. I've recovered a lot of control now. I still need to lubricate one eye, but that's a minor inconvenience and has massively improved.

I've adjusted to single sided deafness in general life and a CROS aid helps at work. It took a while for my brain to realise that no sound on the right is normal! Until then the world felt very strange. Tinnitus for me has been mild and mostly buzzing if I move my eyes.

Jmingo profile image
Jmingo

I have 75% hearing loss in one ear, imbalance and tinitus in the affected ear. which can be quite loud at times. I think the tinnitus affects the understanding of what people are saying as much as the hearing loss itself. By the end of the work day I feel so totally exhausted from just trying to compensate for all these things, I am crying on the way home. I work at a very busy dispatching job in a noisy office which doesnt help the hearing difficulty. The constant head turning and rushing makes the vertigo very bad on busy days. Is there any website that I could find exercises to help the imbalance and vertigo?