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My wife’s fight for normalcy

ANA ribbonOne year ago today, my wife underwent brain surgery to remove an Acoustic Neuroma — a benign tumor which grows on the brain which latches on to nerves. She first noticed a problem one day when she was on the phone with me. She was telling me she was barely able to hear me. Then she noticed it while talking on the phone with someone else. After she switched ears you heard better and she knew something was wrong. After five months of testing and doctors, a scan finally revealed the tumor. We found out just before Christmas of 2014. That week was not as joyous as it normally is for us.

It was a difficult time leading up to the procedure because there was a lot of uncertainty. She could have permanent facial paralysis and lose her hearing among many other complications.

But perhaps my normal human nature took over and I started wondering if my wife would make it through the surgery. We were told often we had the best doctors for the procedure and that we were at the best hospital. None of that mattered because for me nothing is certain. Thankfully, I still have my wife and our daughters still have their mother.

However, one year later, my wife is having difficulties with certain aspects of everyday life. Simple things like walking are a challenge, especially in low-light conditions as her balance is off. She is completely deaf on her left side because they had to go in, pull her ear drum out and fill the ear canal with surgical cement because she experienced some brain fluid leakage. Her hearing was probably not going to be the same regardless if they had to go back in or not.

She hasn’t been able to drive much so I have been the one making the rounds for everything life has to throw at us. I help her, but I have to be her spotter. Whoever is with her basically has to be on blind spot patrol because she can’t turn her head fast enough to switch lines. And driving at night? Forget it. Probably the toughest task she faces.

Other things like comprehension, thinking clearly, etc. have been affected but have improved with time. She never experienced facial paralysis post-surgery because they left half of the tumor in there. If they removed the whole thing, her nerves were going with it.

We’ve asked how this was possible, how it could have been prevented. There never was nor probably never will be a simple answer. We were told it could have been formed from a treatable ear infection. It could even be something that can go undetected throughout a person’s life. Apparently, my wife had hers for quite some time and it just grew.

Life — or “the new normal” — now includes visits to doctors at least every other week, picking up medications each month, and monitoring the other half of the tumor to see if it is growing or not. At her one-year checkup, to see how she was progressing, her doctor bluntly told her it’ll be “years” before she fully recovers. But she is fighting and determined to speed up that timetable.

On this Thursday, dubbed #ThrowBackThursday on social media, I wanted to share this story to reflect on such a difficult time we went through with all of you to help raise awareness for Acoustic Neuromas. Per the Acoustic Neuroma Association, they say that more than 5,000 are diagnosed with it each year. Considering the population, that’s not a high number. But the fact it can happen to anyone at anytime should be enough to help spread the word. Trust me, we know that now.

So if you feel something is wrong or you feel something is not normal — balance, hearing, etc. — please don’t put off getting checked out. You never know what it can actually be.

Permanent link to this article: http://www.thebaycave.com/my-wifes-fight-for-normalcy/

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