regrowth

[Spooky69]

You are all babies so far that I have read. My tumor was removed by surgery AN and they called it a schwannoma. But who knew from what I was told I don't think they knew much. It was taken in 1990, a large bugger that left me deaf, palsied, tinnitus, open eyed, and short of balance., Neeedless to say from then till now you learn to live. Around about august 2023 I started getting headaches and low and behold I had twins. Two little tumors in the place of the removal. After reading all the posts I have now realised this is possible. I was told in 1990 in doesn't happen. But then I was also told I would keep my hearing. Not real trusting of surgeons anymore. Anyway so it's been a quick study and reading all your posts to catch me up. My eye specialist told me and she is a top one that my constant dry eye was because my eye didn't shut correctly but it had nothing to do with the tumor. And I've seen heaps of people posting about it. And by the way try rinsing your eye with Saline eye wash, it's very gentle, gets the muck out and adds a bit of moisture. Anyway so I've had my bitch now I wait to see the surgeons in three weeks and see what they think. Leave them I say, I'm 69 we'll watch and wait. I can't sleep and my glands are all up and hurting. Boy I feel better now nothing like talking to people who understand. My thoughts to you all and thank god you are all there.

[flappers]

Hi Spooky! What a lot you have in your plate… but hopefully having a group of people who know the struggles means you feel a little less alone with it. I would do the same ( watch and wait) before elections for any more treatment, however I’d hope they could offer alternative now if the little buggers are under 3cm of stereotactic radiosurgery ( totally noninvasive radiotherapy) to give them a blast to stop further growth. Of course your eye is dry if it’s not shutting properly, and the cause of it not shutting will have been from the AN or surgery causing damage to the nerve. I’m sorry you’re experiencing headaches, and now swollen glands, that sounds like you’ve caught some lurgy on top of the stress of all this! Hope that bit is temporary and you are properly nurturing yourself at the moment. Sometimes it’s all we can do, to soothe any extra symptoms. We have a great charity called Brainstrust in the UK and BANA which is specifically for those with acoustic neuromas ( vestibular schwannoma). Hopefully you can find similar in Oz too. Nothing will be a tricky as you’ve already faced with the surgery in the 90s, but crap they’ve made an appearance at all.

[musicman5]

I had Gamma Knife radiation for a small regrowth 6 months after my translab surgery for a large vestibular schwannoma in Sept. 2021. I've had 2 MRIs since then and the GN seems to have stopped the regrowth. I also had a lower eyelid lift 6 months after my initial surgery to help alleviate my dry eye due to facial palsy following the surgery.

[Spooky69 in reply to musicman5]

thanks Flappers I'm hoping they want to leave well enough alone. Nice having conversation with like minded people