Living with acoustic neuroma

“The brain is unremarkable”

And we wouldn’t want it any other way.

A few weeks ago, The Hubs went for another MRI – his fourth in less than 2 years. The results showed that his tumour has remained stable with no change since he was first diagnosed in March last year.

I haven’t written very much about our journey with acoustic neuroma. A part of me refuses to give it any more attention than it deserves. And to be honest, there’s not much of a story to tell. For which I am thankful. When it comes to tumours, boring is good. Boring tales give hope of normal days and mundane tasks – blessings that healthy people often take for granted.

The Hubs was diagnosed when he was forced to get an MRI. He had suffered from a persistent ringing in his left ear for about 2 years. Doctors brushed it aside as tinnitus. It was only when he woke up one morning and had difficulty hearing out of his left ear, that I kicked up a fuss and insisted on an MRI. He grudgingly went along. Doctors assured us that it was probably just a bad case of tinnitus, and even the ENT doctor at the hospital commented that the MRI was probably a waste of money. And then we found ourselves staring at a 1.8 cm white blob on his MRI. Oh, hello.

Discovering you have acoustic neuroma sucks. But as The Hubs told his mother when he first broke the news – there’s good news and bad news. “The bad news is that I have a tumour in my brain. The good news is that it’s most probably benign!” And he said it with a big smile. I’m not sure if it helped ease the poor woman’s fears but it sure put the diagnosis in perspective.

Although acoustic neuroma isn’t all bad news, the weeks after diagnosis can still be confusing and filled with anxiety. Here are some things we’ve learnt in our journey, and I hope they will be useful to those who have recently been diagnosed.

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1. Don’t assume your doctor knows best. Doctors are human, and it’s natural that they will carry their own biases, personal beliefs and experiences into the consultation room. We saw a total of 5 doctors, and each had their own opinion on the treatment option. Some pushed for radiation, others felt surgery was the way to go. Trying to weigh the different treatment options while still trying to figure out the anatomy of the brain was frustrating and confusing.

Unfortunately, the reality is this: YOU need to be in the driver’s seat. There’s no other way. It’s not your doctor’s job to plough through the research and various treatment options, and to seek different opinions – it’s yours. Your doctor can only recommend what he thinks is best based on his training, and there’s nothing wrong with that. What would be a mistake is taking a backseat in your treatment plan. In our case, had we blindly followed the advice of the first neurosurgeon we saw, we would have gone ahead with Gamma Knife. We later found out this might not have been the best course of action given that The Hubs’ tumour was cystic in nature.

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2. Do your homework. Not only is acoustic neuroma rare, it is also tricky to treat because each option comes with a set of pros and cons. A lot also depends on the size of your tumour and the severity of the symptoms. What worked for someone else may not necessarily work for you. There are no clear answers and the only way to fight this is to find out as much as you can.

We googled acoustic neuroma to death, and sought inputs from different doctors – ENT surgeons, neurosurgeons and radiation oncologists. The good thing about acoustic neuroma is that because it is slow-growing, you don’t have to rush into a decision. You get to take a big, deep breath to process the fact that you have a brain tumour. Then, take some time to do loads of research (www.anausa.org is a good resource) and meet up with doctors.

Doing your homework does not make you an expert in acoustic neuroma. But it allows you to carry out a meaningful discussion with your doctors, and to ask the right questions. More importantly, it empowers you to arrive at an informed decision. No matter which treatment option you pick, it will carry risks. Should permanent side effects arise, you don’t want to end up saying, “I wish I had known this earlier.”

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3. Go in with your eyes open. There are three options open to an acoustic neuroma patient: (i) watch and wait; (ii) surgical removal of the tumour; and (iii) radiation. No matter which path you take, there are risks involved. Click here for a good overview of the treatment options.

We were blessed to consult with a visiting professor from the Karolinska Institute, which pioneered the use of Gamma Knife as a treatment. He kindly took the time to go through the options with us, and most importantly, he was candid about the possible side effects – headaches, facial nerve damage, etc. He warned that the tumor could swell for up to two years after radiation, causing symptoms to worsen with permanent side effects. He recommended surgery but acknowledged that The Hubs would likely lose his hearing.

Understanding the post-treatment side effects was important in our decision-making process. The Hubs was lucky that besides the persistent ringing and muffled hearing, he still had functional hearing in his left ear and no other symptoms. He was generally happy, healthy and running up to three times a week. Of course we wanted the tumour gone but we were also clear that we did not want to compromise on his quality of life in the process. Take a good hard look at your current quality of life against the possible post-treatment complications, and weigh your options.

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4. Let go. Why us? The Hubs is the last person anyone would have expected to get acoustic neuroma. He had stubbornly refused to use a mobile phone for years, and even now, hardly uses his phone. He eats healthy and exercises. A big part of dealing with this has simply been accepting that things happen, and with God’s grace, we will manage. Sitting outside the neurosurgeon’s office also helped put a lot of things in perspective. We watched people coming in with half their brains cut out and little children heading in for radiation. So yes, we had a tumour but it could have been worse. Being at peace with our decision was also a big part of the journey. With acoustic neuroma, there is no right or wrong answer. And we have little control over how things will eventually turn out. We just need to do our part, surround ourselves with people who love us, have faith and let go.

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5. Watch and wait is not procrastination. We weighed the possible side effects of treatment against The Hubs’ current quality of life, and decided to observe the tumour for a while more. Only if it continues to grow, then would we consider radiation or surgery. To help the body heal, we have cut refined sugar, flour and other inflammatory food. MRIs are done every 6 months. It has been almost 2 years, and with the tumour looking stable, MRIs will now be done on an annual basis. The Hubs’ hearing has also improved since he was first diagnosed.

Watch and wait is not without its risks. We have been warned that should the tumour grow and affect his balance or facial muscles, we may not be able to repair the damage done. Doctors have also cautioned that cystic tumors tend to be more aggressive, and difficult to treat. Waiting and watching while a tumour sits in your brain isn’t an easy strategy. It looms like a constant shadow. In the beginning, I was on edge. The slightest facial twitch or occasional numbness would set me on red alert. But we (fine, maybe just me cos I’m the worry wort) have learnt to let go. As with all things in life, we can only choose to make the best of things.

Disclaimer : This post is a personal sharing of our journey with acoustic neuroma, and no part of it should be construed as medical advice. If you have recently been diagnosed with acoustic neuroma, please seek the advice of medical doctors who have been trained to treat acoustic neuromas. We wish you well.

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13 thoughts on “Living with acoustic neuroma”

  1. Being your own health advocate is the best advice in your post. I fully believe in it! If I hadn’t been “pushy”, I may be suffering from stage 3 or 4 lung cancer.

    1. That was one of the first lessons we learnt and it was a shock. At the beginning, we had simply assumed that doctors know best. Thank god for iPhones, google and long waiting times outside the doctor’s office πŸ™‚ I’m glad being ‘pushy’ had worked for you too, and I hope you’re feeling better.

  2. Happy I am so glad to hear that The Hubs brain is “unremarkable”. I have wondered how he is doing but hate to intrude on your private life. On this Thankful weekend in our part of the world I am thankful that he is doing better than well and that you two are living your life in the happiest let go kind of way! I have to believe that your diet and both your attitudes have made a difference.

  3. Thank you for sharing this candid account of your experiences.
    It may not be AN, but things always happen, and in big and little ways all of us are presented with the need for complex choices. Hearing how both of you went about making your choice for now is very valuable for all of us. The best of luck to you both, and keep on enjoying life as you are!

    1. Funny how choices are hardly ever simple these days πŸ™‚ But with information so readily available online these days, it’s made life a lot easier. Thanks for your kind words. Wishing you and the hubs a joyful holiday season! πŸ™‚

    1. It certainly is, especially the natural, alternative options. Thanks for dropping by! I’ve enjoyed reading about your posts on Japan. It’s one of my favourite destinations! πŸ™‚

  4. This is great advice for anyone going through any tough diagnosis. I think that happens a lot, that people panic and then kind of fade into that. They don’t seek other options or learn as much as they can so they can make their own informed decisions. Sometimes I know people must move quickly, and I’m sure it’s super scary. But you have to do the best thing for you, not simply rely on one or two doctors to tell you what to do. I’m sorry you guys have to deal with this, but I’m so glad you forced an action. I’ve heard that a lot too, that doctors or even patients poo poo symptoms as nothing and they don’t find out until it’s too late. Good for you for insisting! I’m also glad things are remaining stable.

    1. Thanks Michelle πŸ™‚ I really believe that it was God’s grace that led us through this. There was always this peace and assurance that things would be okay even when the doc told us there was a tumour. The Hubs was telling brain tumour jokes right from day 1 πŸ™‚ But I was kinda surprised that the docs all had different opinions and there was no one to pull everything together for us. I think most of us have a tendency to just trust what the doctor says but the biggest lesson we learnt is that we really need to do our own research. Fingers crossed that the tumour remains stable! I hope you’re having a joyous holiday season. Wishing you a Merry Christmas and a fantastic New Year!

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