My continued battle : I thought i might... - Acoustic Neuroma ...

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My continued battle

Wayne4211 profile image
7 Replies

I thought i might share some of my on going battle.

I was diagnosed with a acoustic neuroma about 3 years ago. I managed to delay my surgery due to a few major life issues. But thats another story.

I eventually was forced to confront the beast in October 2016 the overall experience wasn't good. As the specialists said basically what could have gone wrong, did. I developed a csf leak through a sinus that developed behind my ear wound, had to have a lumbar drain which was miss managed by temp nursing staff... which i might mention won't ever be working in the industry again thanks to my surgeon exploding. I am extremely needle phobic as well which doesn't help much... so multiple failed cannula didn't go well with infections and ended up with a pic line being inserted, one of the toughest things I've had to go through but by god was i glad i had it after,

The fat graft site developed a major mrsa infection two days after being released and resulted in me being re admitted for 2 weeks and having the wound debrided and a long course of big bomb antibiotics.

Eventually got sent home 2 days before Christmas.

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Wayne4211 profile image
Wayne4211
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7 Replies

Jesus what a disastrous set of events.

day52 profile image
day52

OMG you poor thing you have really been thru the wringer ...hope you are improving

Hipporanabella profile image
Hipporanabella

Hi there I have found this forum whilst doing some research as my sister has just had an AN diagnosis she is aged 45 and it’s 1.8cm she is going to addenbrooks for a consultation of her options.

Anyway after reading your posts it seems you have been through the mill and I sincerely hope that you are on the mend now.

Wayne4211 profile image
Wayne4211 in reply to Hipporanabella

Thanks it's an on going struggle, still have a couple of facial surgeries yet to go that the plastic surgeon has recommended to help with my palsy. I'm still getting speech pathologist help every couple of weeks and then there's the depression etc but, it could be worse so I'm grateful for that visit to the hearing centre to see why I was getting a bit deaf in my right ear.. well.. it's completely dead now but there's no life threatening sized tumour causing it now at least.

Hipporanabella profile image
Hipporanabella in reply to Wayne4211

Yes! I am glad that you are still battling on and overcoming the AN affects.

As Jung said “ it’s how one looks at things rather that what they are in themselves” that is important and I can see from this forum how sharing positive stories and just getting on with the situation with stoicism and acceptance is so much better for the self than wallowing.... of course there must be many bleak days when the fearovercomes one ..... that’s completely normal... But then having family friends and these forums gives one someone to turn to for comfort and guidance. And as you say the alternative is death.... so live to fight another day....

Good luck with your continued journey of recovery.... and I am so glad that this forum seems to be helping so many people.

margielyn profile image
margielyn

So sorry to hear of your journey with your AN. For those facing a new diagnosis of AN there have been some good outcomes too. Everyone's experience is different. 14 hours after my husband's AN surgery. he was eating Barbecue and watching CNBC! He was home 2 days later. This was 5 years ago and yearly MRI shows AN is completely gone. Not saying everything is perfect, as he was not able to taste on right side of tongue for several months and hes still dizzy from time to time. We did a lot of research into which doctors to use and The University of Miami Jackson Hospital had some top rated surgeons.

Y07k profile image
Y07k

God bless you and your loved one. So sorry to hear the trauma that you had to go through. I have recently been diagnosed with AN and have been told it is 1.1cm long. This in mind they want to monitor it and call me in for repeat mri scans every year for the next 5years before deciding off what to do.

Keep the fight going we all standing side by side here.

God bless

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