lifestyle

Chelsea's AN Experience: From Diagnosis to Recovery

joanne — Mon, 02 Dec 2019 22:52:32 +0000

Chelsea's AN Experience: From Diagnosis to Recovery joanne Mon, 12/02/2019 - 17:52

Chelsea Shanoff is a musician who has faced an Acoustic Neuroma diagnosis.

Chelsea Shanoff

In December 2016 I was finishing my first semester in a PhD music program in Toronto, when I started experiencing strange sensations through the left side of my head: tingling, electrical “zaps” on my face, fluttering in my ear, and what felt like dental pain. I was worried about these symptoms, but I figured I had overdone it with playing my instrument, the saxophone, and assumed I was suffering from a musculoskeletal disorder in my jaw or neck.

Over the next half year, my symptoms progressed and fluctuated, and I saw dentists, doctors, manual therapists, and an ENT who finally discovered that my high-range hearing on the left side was lower than on my right. Again, I thought this was just the wear and tear of being a musician. She said she was being overly cautious but that she would like to send me for an MRI to rule out this rare condition. Fast-forward a number of months, and we arrive at my diagnosis of the “really rare condition” – a 2cm Acoustic Neuroma (AN). Looking back, I see some mild dizziness and balance symptoms that had been present for a long time but that were subtle enough to not alert me to any issues.

The specialists advised me that although I would likely need to have surgery down the road, we would first “watch and wait”, with MRI scans every six months. The waiting period allowed me to gather as much information as I could and to seek multiple opinions. I explored different hospitals, surgical approaches, and doctors in order to make the most informed decisions. I continued on with my life; most people did not know what I was dealing with, but the facial symptoms continually worsened. I learned that the electrical sensations I was experiencing were caused by my tumour pressing on the trigeminal nerve (one of the other cranial nerves), and it gradually progressed to the point where eating and talking would send incredibly intense shooting pain through my face. It became clear from the scans that my tumour was slowly growing (it was about 2.5 cm at the time of surgery), and the surgeons said it was time to take action.

Almost two years after diagnosis I had translab surgery at Sunnybrook Hospital in Toronto. The team was able to remove almost the whole tumour: a few cells were left behind in order to preserve the facial nerve (hopefully these cells won’t show up on an MRI for many years, if ever). The surgeon reported that the facial nerve was extremely thin and if I had waited much longer, they wouldn’t have been able to save the nerve, and that the tumour appeared much larger once they actually got inside my head. Needless to say, hearing this made me very glad that I did not wait longer to do the surgery.

I feel incredibly lucky that my recovery has been straight-forward and positive: I did not have any surgical complications or permanent facial paralysis, I was walking (gingerly) on my own by the end of the first week, and the dizziness and nausea that I experienced immediately following the surgery improved greatly with time, regular walking, and vestibular exercises. I was socializing at restaurants by the end of the first month, did a (slow) yoga class at six weeks, and got back on my bike after two months. I’ll never really know how much of my great outcome can be attributed to luck, the surgical team, or my pre-op health, but I would assume it to be a combination.

My surgeon was honest with me, saying that many people feel frustration after a few months post -op, when they are in most respects “back to normal,” but still don’t feel like themselves and are adjusting to internal sensations. Many refer to this part of recovery as “chasing the final 10 or 15 percent” and that even with a textbook no-complications surgery, it likely takes about a year for the brain to fully heal from the surgery and adapt to the loss of balance and hearing nerve.

I am writing this at four months post-op, thinking a lot about this in-between stage. Patients often don’t get a lot of information from doctors as to what this part of recovery is like, and it can be an isolating and emotional time. The brain is working overtime to adapt, and this often shows up as intense fatigue, brain fog, and the “wonky circus head” phenomenon. Adapting to single-sided deafness post-surgery is often the hardest part to adjust to long-term. I am still getting used to the challenges of filtering sounds and noisy environments, and also coming to terms emotionally with this huge loss, and what it means to me. I have learnt what triggers my fatigue and the circus- head feeling and how to minimize the effects, but also that total avoidance of triggers can make recovery slower.

This stage of recovery can be frustrating because it is invisible to others and can be hard to explain. With such huge leaps and bounds of recovery within the first month, during this middle stage it can feel like progress has stagnated. This is where connecting with others who have gone through the same thing, and understand these challenges, can have a huge positive impact.

Shortly after diagnosis, I connected with another AN-er who lives in the same city as me. We are similarly aged and had the same surgical team with our surgeries two months apart. We have become close friends from this experience, with a level of connection that is only possible when you share a diagnosis and neurosurgeon! Acoustic Neuromas are often referred to as the best type of brain tumour to get, but they pose their own challenges due to the multiple treatment options (yet no “perfect” treatment), hearing loss, and a myriad of possible symptoms.

The emotional toll of living with an AN, and going through the surgery, should not be neglected; recognizing the emotional impact is an important part of the long-term recovery process. For that reason, it is crucial not only to seek out the best neurosurgeons and specialists, but also a varied support system that can help guide you through diagnosis, treatment, and recovery – whatever that may look like for you.

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A Little Off Balance but Not Out of Step: Nick's Hiking in Norway

joanne — Mon, 19 Dec 2016 17:03:41 +0000

A Little Off Balance but Not Out of Step: Nick's Hiking in Norway joanne Mon, 12/19/2016 - 12:03

Nick Kucharew is an ANAC board member. He elected to have complete surgical removal of his tumour in 2013. Although he still experiences minor balance issues, Nick is grateful for the support he received from ANAC through his diagnosis and treatment.

Nick Kucharew

Over three years ago I had acoustic neuroma surgery to remove a moderately large tumour. The surgery was very successful with complete removal of the growth and only some minor issues afterwards. Aside from hearing difficulties that I continue to struggle with, I also have issues with my balance. Sometimes my balance seems normal, while other times I wonder why I just don't go lie down!

I keep persevering with my balance issues although it is somewhat scary at times. I bump into walls, miss steps, stumble, and fall the odd time, but I do keep on going. A year or so ago, I was up on the extension ladder and my wife said I started to sway backwards suddenly. She thought I was going to fall. It scared the dickens out of her, but I managed to grab the rung before anything happened. Scared me a bit too!

So about my trip to Norway...

My wife and I began planning a three-week trip. The first week was going to be spent driving from Oslo to Bergen. The next two weeks would be a cruise along the Norwegian coast - all the way to the top and back. Pretty nice, huh?

As we were figuring out our trip in more detail such as driving routes, accommodations, and sights along the way, we became really interested in going to Pulpit’s Rock (Preikestolen). This is a very famous mountain location in Ryfylke that towers 604 meters over the Lysefjord. People come from all over the world just to see this place. It is a huge flat plateau, just over 2,000 feet above the fjords with water below, and the only way to get there is to hike up the mountain. The view would be amazing.

The view of Pulpit's Rock. Photo by Nick Kucharew.

So we began planning our own once in a lifetime visit. Early on, my wife asked me if I was okay to do something like this. I conveniently forgot about my balance issues and replied, "Sure, why not?"

As our trip was planned for the off-season when there was the potential for cold and wet weather, we thought a guide was the only way to do this safely. We hired a guide from a company in Norway that specialises in this kind of thing. It wasn’t cheap, but we didn't want to go on our own. We knew this made the most sense since we were not familiar with the area or the terrain.

Getting closer to our departure date, I started to investigate Pulpit’s Rock more and more. I watched videos and tried to get a good feel for what I was getting into. When I saw the pictures and the videos, I started having second thoughts! What the heck was I thinking! It looked dangerous in many parts, and I was really getting concerned about my balance. I only had to make one small misstep, and I'd be in big trouble!

One section near the top appeared very narrow with a steep drop-off all the way down. And I couldn't see in the pictures and videos if there are any supports! My mind was racing as I tried to imagine if I would be able to pass that spot. I was getting more and more worried and contemplated cancelling this dream of a hike. I worried about it for days. I spoke with my wife and eventually she agreed to cancel, even though we would lose the upfront payments.

It would hurt me to disappoint her. This was a dream for her too! So we decided that we would figure out some sort of solution!

After quite a bit of discussion, my wife and I arrived at a plan that we hoped would work. We outfitted ourselves with some hiking gear - backpacks, walking poles and hiking boots. We decided to train for our Norwegian hike by going on treks near our home. This allowed me to practice, practice, practice, and either find out if this dream was a possibility, or not.

With about six weeks before we were due to leave, there really wasn't a lot of time! But better late than never.

The first weekend we noted that the hike did not look terribly difficult. As we continued to walk up hills and over rocks, I discovered my balance was actually BETTER than normal. What gives? Maybe the ground was so uneven and rocky that it was offsetting my imbalance? Who was I to argue?

Over the next six weeks, we hiked and hiked and hiked, as much as we could. We wanted to get used to the rougher terrain while carrying all the weight from our gear in our backpacks. We were bringing cameras, a tripod, wind jackets, extra clothes and water. We needed to be prepared. Our hikes were all okay. And we got a lot of exercise too!

Now on to Norway and Pulpit’s Rock!

We left our hotel early in the morning, before 7 am, travelled by ferry and then drove to the base of our climb.

The start of the climb

Here is a picture near the beginning to give you some idea of what we were climbing/hiking up.

The climb to the top went well. The preparation and training were well worth the effort. After 3 or 4 hours, we reached the top.

View from the top

This is what we saw. Pretty nice.

After only a few minutes I decided I had to go close to the edge, lie down and look over, straight down to the water. Previous to the trip there was NO WAY I could even imagine being near the edge. I didn’t think I would be able to do it. I was nervous that a gust of wind would hit me, I'd lose my balance and get tossed over!

I also climbed up here so I could get some more pictures.

It took us another 3 or 4 hours to descend a back-route that very few people know about. Fortunately, our guide had hiked this area for many years and knew the trails that would work best for my needs. Hiring a guide was, in the end, one of our best decisions.

The entire trek took us almost 8 hours - to go up and back down. It was the most gruelling hike we could have ever imagined. We were exhausted and very sore for a few days afterwards.

On the top

But it was worth it. Let me tell you. It was worth it!

I was also extremely happy that I worked up the courage to go to the edge. It was something I never thought I could do, but I did with enthusiasm. That alone has given me a bit of a reputation with my wife as a "Wild Man."

As a final send off to our adventure, here is a picture I shot at the end of the trip when our ship was in a harbour after a storm. Can you see the double rainbow? My wife said she saw a triple.

So here I am looking over the edge for about a minute and a half, while the guide took these pictures. My wife is just behind me. I think she was going to grab my legs, just in case.

I also climbed up here so I could get some more pictures.

View from the climb

The entire trek took us almost 8 hours - to go up and back down. It was the most gruelling hike we could have ever imagined. We were exhausted and very sore for a few days afterwards.

But it was worth it. Let me tell you. It was worth it!

As a final send off to our adventure, here is a picture I shot at the end of the trip when our ship was in a harbour after a storm. Can you see the double rainbow? My wife said she saw a triple.

Rainbow after the storm

Watch and Wait: The Waiting Game

joanne — Fri, 04 Nov 2016 15:46:16 +0000

Watch and Wait: The Waiting Game joanne Fri, 11/04/2016 - 11:46

Carol Krucoff is a former Washington Post writer and editor, yoga teacher at Duke Integrative Medicine in Durham, N.C., and author of "Yoga Sparks: 108 Easy Practices for Stress Relief in a Minute or Less." Visit her website healingmoves.com

Watching my little brain tumour grow slowly over the past decade has been an extraordinary exercise in courage, patience, gratitude, and faith. I learned about my tumour by accident in 2003 around my 50th birthday when I'd had an MRI scan after collapsing from drinking too much water during a marathon.

Fortunately, my tumour is a benign and generally slow-growing type called an acoustic neuroma. Located inside my skull on the nerve responsible for hearing and balance, it measured just three millimetres - about the size of a sesame seed - when discovered. Although I had no symptoms, an expert I consulted recommended two possible treatments: surgery to remove it or radiation to stop its growth. While this tumour wouldn't metastasize, its growth could impair my facial nerves, balance and hearing, or even threaten crucial brain function. She advised acting early when the tumour was small. Instead, I decided on a course of action known as "watch and wait."

Also called "expectant management," "active surveillance," and "watchful waiting," this involves closely monitoring an ailment but withholding treatment unless symptoms appear or progress. Often used with slow-growing or precancerous lesions and with conditions where treatment risks may outweigh benefits, this strategy does not mean doing nothing. It involves regular checkups - which could mean blood tests, biopsies or imaging scans, all involving some physical, emotional and financial stress. And it requires a tolerance for uncertainty, the willingness to live with something that could be a ticking time bomb or a harmless growth.

Over a decade of watchful waiting, I've had 10 MRIs. Each of these scans was followed by a hearing test and a meeting with my doctor. I'm grateful to have health insurance, which means - in the most recent case - I paid $160 coinsurance for the $3,579 MRI, and $50 for the $960 hearing test/doctor's appointment.

The emotional cost, however, is harder to calculate.

When first diagnosed, I immediately went on the Internet and learned that most acoustic neuromas are slow-growing - but others increase rapidly. Anytime I felt dizzy or had trouble hearing, I worried. I joined a support group and met a woman whose surgery to remove an asymptomatic two-millimeter tumour had left her with crippling headaches and facial pain. I logged on to the discussion forum on the Acoustic Neuroma Association's website and read horror stories of botched treatments as well as wonderful examples of excellent results. After several months of almost daily trips to the forum, I became overwhelmed by the anxiety these posts aroused and signed off.

I tried to remain calm over the years as I watched my tumour's creeping growth, at a rate of about one millimetre - the size of a grain of sugar - a year.

Navigating an emotional tightrope between responsible vigilance and anxious obsession, I gratefully clung to the fact that I had no symptoms. My hearing and balance seemed unaffected. My yoga practice proved extremely helpful since a central teaching is finding equilibrium - that steady place between effort and surrender - which is the key to watchful waiting. I found comfort in viewing the experience as an opportunity to cultivate gratitude and faith, and I meditated daily on visualising the dissolving of my tumour.

By 2006, about three years after it was discovered, my tumour had grown to six millimetres - about the size of a pea. At my doctor's urging, I met with a radiation oncologist, who recommended that I undergo radiation treatment intended to halt the growth. But since I was still asymptomatic and the tumour was still small, I chose to continue watchful waiting. I'd read that some tumours stop growing on their own, and I hoped this would be the case with mine.

In April 2013, based on an article I had written about the accidental discovery of my tumour, I was asked to testify before the Presidential Commission for the Study of Bioethical Issues at a meeting devoted to the ethical implications of incidental findings. Representing the patient's perspective, I told the panel, "As a health journalist I'd always thought there was a great benefit in early detection. However, my experience has made me question the wisdom of learning about an abnormality if all it offers is anxiety - as well as potential harm from treatments for something that might never affect my health."

Yet when a panel member asked me, "Do you really wish that you simply had never been told?" I had to admit, "Definitely no. If [the doctors] know, I want to know. I wouldn't want to be shielded for my own protection. That's my decision; this is my brain." I urged the panel to keep patients informed "in simple, direct language of what's been found and its implications for health" and to "consider adding a support person to the health-care team, such as a social worker or psychologist, to help the patient and their family process the information and decide on a course of action."

Ironically, four months after my testimony, I had my scheduled MRI and hearing tests and learned that my tumour measured 1.2 centimetres - about the size of a small walnut.

While I still had no symptoms, tests of my vestibular function - the sensory system that contributes to balance - on the affected side were abnormal even though I had not experienced balance problems. Continued growth would now mean a strong likelihood of negative effects on my hearing and facial nerves. A common way people learn of an acoustic neuroma is experiencing sudden, one-sided hearing loss, which may be permanent. So perhaps my incidental finding had been a blessing after all. It was time to take action.

I spent six weeks visiting brain surgeons and radiation oncologists, spoke with patients who had chosen each approach. I made the decision to have what is known as gamma knife radiosurgery.

In my decade of waiting, there had been significant advances in this minimally invasive treatment option, which uses imaging to direct gamma radiation very precisely to a target point. The radiation is designed to inactivate further growth of the tumour. In the large majority of cases it is successful, but sometimes the tumour continues to grow, and further treatment is necessary. And there are scary reports of rare instances where benign tumours turned malignant through radiation. Yet weighed against the potential risks of brain surgery - including a likely hearing loss in one ear - the gamma knife seemed right for me.

In February 2014, I had the morning-long outpatient procedure, which involved being given a mild sedative and having a head frame attached to my skull, then lying very still, similar to what you do while having an MRI. I left the hospital in the afternoon with gauze wrapped around my head, feeling just a little unsteady, and rested the next few days. By the following week, I felt fine, and I was back to teaching yoga.

MRI and hearing tests were done six months and then one year later showed that my hearing and the tumour were stable. Thankfully, I have felt no ill effects from the procedure, although I have been told that effects of radiation may emerge years later.

It could take at least two years after the radiosurgery to learn whether my tumour has stopped growing. After that, further scans are recommended at two, four and eight years. So I will be watching and waiting for some time. And I am not alone.

The boom in life expectancy - from about 47 years in 1900 to about 78 in 2012 - has resulted in an unprecedented "silver tsunami" of older adults, and technological advances mean an increased likelihood of finding some abnormality during those extra decades of life. While humans have always been aware of our mortality, we have never been able to see the approaching train that may take us out so clearly.

For me, this unsettling knowledge presents a spiritual opportunity. Like the ancient yogis who were taught to imagine death sitting on their shoulder, having a heightened awareness of impermanence can serve to make the present moment that much sweeter.

And in my case, watchful waiting involves more than my little brain tumour. As with the old joke "What do you always look for but hope never to find?" (Answer: a run in your stocking), I'm continually monitoring a variety of conditions. I have regular echocardiograms to check my prosthetic bovine aortic heart valve. (I acquired this valve during open-heart surgery in 2008 to replace a congenitally abnormal valve that had become dangerously narrow and created an aneurysm that needed repair.) I have twice-yearly examinations by a retina specialist for a potentially precancerous "eye freckle" called a choroidal nevus. A dermatologist checks multiple moles on my skin once or twice a year, and every five to 10 years I have a colonoscopy to check for polyps since there's a family history of colon cancer.

That said, I'm grateful to feel quite well, thank you. I walk my dog several miles every morning, practice yoga daily and teach yoga classes. My friends marvel at how such a healthy person can have such a long list of medical problems, and they often compliment me on my bravery.

The truth is, I've been terrified facing brain radiation, open-heart surgery, and other challenges, and I have had some dark moments. But I'm grateful to have wonderful family and friends to support me, and I don't want to weigh them or myself down with prolonged upset. Life is too short to waste precious time wallowing in worry.

And I've learned that courage isn't the absence of fear - it's being afraid, but doing what you need to do anyway.

Quality of Life: The Essence of Patients with Acoustic Neuromas

admin — Mon, 05 Sep 2016 14:35:21 +0000

Quality of Life: The Essence of Patients with Acoustic Neuromas admin Mon, 09/05/2016 - 10:35

Dr. Mazda Turel, MD, Clinical Fellow in Minimally Invasive and Complex Spine Surgery Rush University Medical Center

Quality of life (QOL) is a multidimensional concept that includes an individual’s subjective evaluation of all aspects of their life – physical, mental, emotional, social and even philosophical and spiritual. The last two are my personal incorporations into the definition since this is what human beings become when faced with adversity.

Thankfully, the entity of a Vestibular Schwannoma is benign one, but unfortunately in a ‘malignant’ location of the head. Patients with small tumours can sometimes have exasperating tinnitus and those with larger ones, disabling ataxia. Some people with tiny tumours have the apprehensive option of watchful waiting, while others with giant masses have no choice but an operation. Surgery includes encountering vital cranial nerves, blood vessels and the brain stem in the vicinity of the tumour. If any of these vital structures are disturbed, the event can damage QOL.

Hence, QOL becomes a moving target from one individual to another and more so at different time points in people’s life. It varies with age, sex, character, socio-economic status, job satisfaction, the nature of our relationships and our willingness to accept our situation and make the most of it.

I’d like to tell the story of Paul Kalanithi, a brilliant neurosurgeon. While in his final years of residency at Stanford and fielding job offers from several major universities, he was suddenly diagnosed with metastatic lung cancer. In a single moment of recognition, everything he had imagined for himself and his wife evaporated, and a new future had to be imagined. For him, exemplary QOL transgressed from the desire of achieving academic excellence and stepping onto center-stage, to being able to hold his newly born daughter’s hand to whom he dedicated the heart-wrenching story of his life. In his book titled "When Breath Becomes Air", the quest for 3-year-old is what makes his life more meaningful. It’s a book of two halves: the first is about becoming a doctor and saving a life, the second about becoming a patient and facing death. I encourage you to read it.

Fortunately, in acoustic schwannomas death is a rarity, almost never seen in this era of modern medicine. Our strategy of treatment has evolved significantly over the last 3 decades, ranging from the enthusiasm of complete removal, which is often fraught with facial disfiguration and hearing loss, to the current philosophy of tailoring the operation to such an extent so as to minimise the tumour size. The latter strategy enables preservation of these nerves, leaving the remnant behind for radiosurgery to control.

What has also evolved is patients’ involvement in decision-making of their care and their willingness to participate in research allowing doctors to gain a better understanding of their overall condition. Several studies have shown that the perception of an outcome by the patients often differs from that of the physician and hence Quality of Life (QOL) studies are needed to assess the effect of treatment as defined by the patient. Answering uncomplicated questions on standardised global health tools such as the Short Form 36 (SF-36) and the Glasgow Benefit Inventory (GBI) can do this. Studying patients QOL, both before and after treatment, or even while watchful waiting gives insight into the holistic effects of observation or surgery and not just a simplified account of the ‘audio-facial’ morbidity that this tumour is associated with.

We conducted a prospective study in 100 patients who underwent surgery for large and giant tumours. The interesting finding was that these patients scored lower on all the QOL domains compared with the normative population. This finding was corroborated by another study which showed that the SF-36 scores of vestibular schwannoma patients at diagnosis were significantly lower compared not only with scores of healthy controls, but also with those of patients with head and neck cancer, benign prostate hypertrophy, or chronic obstructive pulmonary disease and deaf patients. Thus, it is prudent to use each patient as his or her own control to determine QOL outcome after surgery. If the normative population scores are used to determine the outcome of surgery, the benefits of surgery will be underestimated.

The results of our study showed an improvement in health-related QOL compared with preoperative status in all cases, with 63%–85% of patients showing a clinically important difference in various domains at one year. A second follow-up evaluation was performed at two years and showed sustained improvement in SF-36 scores. In some domains, there was a further improvement beyond the first follow-up. On the GBI, 87% of patients reported improvement, 1% felt no change and 12% of patients reported deterioration.

In conclusion, the QOL is more important than life itself. There is no passion for being found in settling for a life that is less than the one you are capable of living. Our happiness is enriched by the essence of our thoughts, so let’s have positive ones. Our well-being is enhanced by the nature of our actions, so let’s have kind ones. Let us fill each and every waking moment with enthusiasm, affection, and gratitude. Like Abraham Lincoln once said, ‘it’s not the years in your life but the life on your years that makes all the difference.