post surgery

Lessons Learned: Anna's Navigation through her AN Diagnosis

joanne — Mon, 01 Feb 2021 15:33:35 +0000

Lessons Learned: Anna's Navigation through her AN Diagnosis joanne Mon, 02/01/2021 - 10:33

Anna Gurdon is an ANAC board member who learned some valuable lessons navigating through her AN diagnosis.

Anna Gurdon

Arriving at an AN diagnosis often requires the “Squeaky Wheel” approach. After a boating accident in 2012, I immediately developed tinnitus and muffled hearing on my right side. I did go see my family doctor as well as an ENT specialist, but unfortunately there was no official diagnosis. My symptoms showed signs of a concussion as a result of the boating accident. As the years went on, I noticed my hearing getting worse, the tinnitus was unbearable some days, and I was getting headaches all the time.

Once again, I followed up with my doctor in 2016, who sent me to a second ENT specialist. My symptoms were again related back to the accident. Although the loss of hearing was noted, nothing further was investigated.

In January 2019, I went back to my family doctor and expressed, “something is really wrong with me”. I re-explained my symptoms and shared with my doctor, “I feel like I have a bad day, every day”. At the same time, I continued to do my own research, and everything pointed to an Acoustic Neuroma. When I had a third ENT specialist appointment, I went in telling him that I think I have AN. He gave me some validation and ordered a balance (VNG) test, and an MRI. The immediate data from the VNG test indicated my balance was significantly compromised. Both tests eventually confirmed my suspicion, and I was officially diagnosed in August 2019 with an acoustic neuroma. It was 2.2cm in size.

Like everyone, I was overwhelmed with emotions and not sure on next steps. I just kept thinking, how can this happen? We have so much going on at home. I have two teenage children, a very stressful job, and so many family commitments. What are we going to do? I didn’t want this to change my world. My husband and I decided to talk to the kids and the extended family; we told them what was going on and used the ANAC website to help explain the issue. Our kids were old enough to understand the severity, and we assured them that I was going to be just fine. I also talked to my work, and they were extremely understanding. I decided to slow down at work to part-time, affording me time to do some research, attend appointments, and take some time to myself.

Thankfully, I also had ANAC to help. I reached out and had a very lengthy conversation with Carole Humphries, Executive Director about my diagnosis. Timing worked out for me; that week there was a support group meeting which helped me understand my prognosis and options.

I was referred to Sunnybrook, and had appointments with two surgeons. I learned that the two best options, based on my age, tumour size, and amount of hearing loss, were either radiation or surgery. The approach for surgery was explained in detail. After my appointment, I did my own research and elected to undergo surgery using the translabryinthine approach. Accepting the fact that my hearing was not serviceable, and that I would be single sided deaf (SSD), was not an easy pill to swallow.

In the months leading up to surgery, I prepared as much as possible. I exercised daily, prepared freezer meals, arranged a support system to help with the kids and their sports commitments, while I was recovering. Thankfully I have an amazing, caring, and understanding family, all willing to help.

My surgery was on December 5, 2019 and lasted 8 hours. We couldn’t have asked for a better outcome. The full tumour was removed and the facial nerve was preserved. I am forever grateful to the team of surgeons, nurses and medical staff at Sunnybrook Health Sciences Centre.

One week post-operatively, I developed mild facial paralysis. My right side showed signs of palsy, with difficulty to blink my eye, and a sloped smile. During my post op appointment, I was advised it was temporary and would go away with warm compress and massaging. This all happened during the holidays, so I did my best to still attend family gatherings. However, it was only three weeks post-op so I was fatigued and felt a little awkward with the facial palsy. At the fourth week, I really feel like I made a turnaround. On New Year’s Eve, we celebrated and I went out for dinner with my family.

My recovery consisted of long walks every day and going to the mall before it opened and doing laps of power walking. By the sixth week, I returned to the gym: did longer walks on the treadmill; increasing intensity; introduced gentle yoga and engaged in social activities with friends and family. I started to re-gain my balance and also saw a vestibular therapist. In addition, I returned to normal parental activities by driving my kids to and from school and attending their competitive sports games.

The SSD has taken some time to get used to, and I can honestly say that at ten weeks post-op I am still not completely used to it. I have learned to use an ear plug in noisy situations such as my son’s hockey games. In social settings, I selectively pick my seat knowing that I can’t hear out of my right side. As well I have learned to be honest with colleagues and friends by telling people upfront of my SSD, or telling people to have one conversation at a time.

Finding out about your AN diagnosis and options is not an easy process, but going through this has taught me some very valuable lessons.

Be an advocate for your own health and get a second, sometimes third opinion.
Use a support system of family and friends, and be thankful for their love and support.
ANAC is an excellent resource for help, and their services are invaluable too.
We are lucky to live in Canada; we have access to excellent health care.

My greatest advice and learning from all this are to embrace the change, do your research, and find your new normal. It won’t be easy, but please remember there is support.

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.

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.