Gamma Knife

Docs Team Up for a Kid: Ben's Story

joanne — Wed, 05 May 2021 15:41:28 +0000

Docs Team Up for a Kid: Ben's Story joanne Wed, 05/05/2021 - 11:41

Ben was only 15 years old when his hearing loss was discovered to be an AN.

Ben Espey with Tessa

It all started in my Grade 9 homeroom classroom. The teacher didn’t mind if we listened to music so I had both my headphones in but realized that I couldn’t hear much of anything in my right ear. I assumed that my right headphone must be broken. For the next few months, I only ever used my left headphone. I finally realized that it wasn’t a problem with the headphone at all, but with my actual ear. I didn’t tell my parents right away because I didn’t think it was a big deal; I thought that my ear might just be plugged because of a cold or allergies. Boy was I wrong!

After a few weeks I finally told my parents about my hearing issues. We went to my family doctor to see what was the problem, thinking it would just be a wax build up. The doctor looked in my ear but couldn't see any visible problems. He suggested that I go for a hearing test and also referred me to an ENT specialist. The hearing test didn’t go too well and the ENT ended up sending me for an MRI. The results revealed the problem: a 2.5 cm mass on my acoustic nerve. An acoustic neuroma was a term I’d never heard before but one I would become far too familiar with. I just kept thinking, “How can this be possible? I’m a kid!” My parents and I did a lot of research about my condition and found ANAC, which turned out to be a huge support.

Since I was still a minor, I was sent to the Hospital for Sick Children in Toronto (SickKids), where I stayed for a few nights. During my stay at SickKids, they ran different tests and monitored me to confirm the diagnosis. This was very weird for me as I felt completely normal and like myself. The doctors explained that although the tumour was benign, it was extremely rare in children and could be very serious. After a lengthy discussion with the physicians, myself and my family, my doctors recommended waiting and monitoring what happens, as this type of tumour is slow growing. Every three months, I would go to SickKids for a series of tests, which included an MRI and a hearing test.

After my mom reached out to ANAC, its executive director Carole Humphries suggested she attend the World of a Vestibular Schwannoma Symposium in 2018, where she would have an opportunity to approach Toronto Western Hospital’s Dr. Gelareh Zadeh in person, one mother to another. The first request had been turned down based on the policy regarding care for children.

As a result, Dr. Zadeh, called by some a rock star in neurosurgery now head of neurosurgery at the University Health Network and Director of Krembil Brain Institute, was brought on to work with a team of doctors at SickKids. I felt very lucky to have so many experts taking care of me. The tumour continued to grow but I was having no symptoms other than hearing loss. Being an active 15-year-old kid, I went on with my life: going to school, playing hockey and hanging out with friends. Over the years, I never felt like this tumour was holding me back from doing anything; it was just something that I lived with. My hearing never got much worse and I just learned to deal with it. The scary part was that I knew at some point I would need to get surgery to remove this tumour but I didn’t know exactly when.

It wasn’t until I was seventeen that the doctors at SickKids Hospital and Toronto Western Hospital agreed that we should go ahead with surgery. I was very nervous in the weeks leading up to my surgery but the doctors and my family were very reassuring. The uncertainty of what would happen post operatively – was what scared me the most. I had come to terms with the fact that I would most likely lose some if not all of my hearing in my right ear but there were many other complications that could occur.

On the day of the surgery, I tried to stay as calm and level-headed as possible. I walked in through the hospital doors with my head held high, ready for anything. On the inside I was freaking out. Once I was in the operating room, the surgeons and nurses were very friendly and kind. I remember them asking me what I would be doing at that moment if I wasn’t at the hospital. I said I would probably be out golfing with friends. The conversations that I had with the nurses in the minutes leading up to my surgery comforted me and reassured me that I was in the right place to get this surgery done. Within ten minutes, I was asleep.

For me it was a very quick procedure; I went to sleep, then woke up. ln reality, it took close to ten hours. I woke up in the ICU and was asked to perform different exercises with my face to see if I had lost any facial function. Luckily, I had not. At this point I could barely keep my eyes open; I was so tired. I was taken to the recovery room, where my mom was waiting for me. Since my surgery was done during the Covid-19 pandemic, I was allowed only one visitor at a time. Because we live in Uxbridge, my parents took time off work and booked a hotel close to the hospital so they could be there at this very important time in my life. This meant that my mom and dad were able to take shifts to be with me. They would each spend 24 hours with me and then switch over.

After a day in the recovery room, I was up and walking, I didn’t have much energy at that point and could only stay awake for a few hours at a time. I was discharged from the hospital after only three days and went back to my home. I wasn’t able to do much physically for about a month. But now almost three months since my surgery, I’m feeling almost 100 percent except for my loss of hearing. I’m “learning to live with it.”

I am going to school, working and going to be able to get back on the ice to play hockey in 2021. I am getting ready to go to university this coming year and hope to attain a business degree. I just had another MRI done at Markham Stouffville Hospital and had a consultation with Dr. Zadeh over the phone. She said that it is looking very good and healing properly. From now on, I will only need to get MRIs done every six months to a year for the time being.

I am just very thankful for all the doctors and nurses that helped make this process as good as it could be, and, of course, to my parents for going the extra mile to support me. I was very lucky and blessed to come out of this surgery with very few issues. What I have learned through this process is that by staying positive and surrounding yourself with positive people, you can get through anything.

My Acoustic Neuroma Experience: Bill's Journey Down a Bumpy Road

joanne — Wed, 07 Oct 2020 20:02:21 +0000

My Acoustic Neuroma Experience: Bill's Journey Down a Bumpy Road joanne Wed, 10/07/2020 - 16:02

Bill Wood recently moved to Oakville, Ontario with his wife where he continues to drive and explore his new neighbourhood.

Bill Wood

During 2011 and 2012, I experienced four episodes of horizontal double vision while driving. An optometrist could not detect any eye-related problems and suggested that the cause could be medical. My family doctor arranged for testing at a stroke prevention clinic. An x-ray detected no abnormalities, but an MRI showed a growth in my right ear, which I was told would have to be removed. I was referred to a neurosurgeon, who told me that I had an acoustic neuroma about the size of a pea. As these tumours can sometimes stop growing and not require intervention, my options were active surveillance (Scan and Wait) or surgery.

Since the tumour was small and I was not experiencing any major problems, it was suggested that I have another MRI in a year and review the situation then. Apart from the vision problems, I had vague symptoms consisting of light-headedness, minor balance problems and sound distortion in the right ear. The neurosurgeon saw nothing in the MRI that would explain the double vision. A referral to a neuro-ophthalmologist resulted in the diagnosis of a mild sixth cranial nerve palsy, which resulted in a prism prescription being added to my eyeglasses to alleviate the problem. Apparently, there was no connection between the acoustic neuroma and the sixth cranial nerve palsy, which I find difficult to accept, since they both occurred at the same time.

I began to notice symptoms associated with an acoustic neuroma in 2013. Walking the dog was difficult when she pulled on her leash, and I was afraid of losing my balance. Head movements resulted in increasing dizziness, and hearing in the ear with the acoustic neuroma ear was becoming worse, as confirmed by an audiogram.

The second MRI showed that the tumour had grown considerably. Because I was having symptoms, the neurosurgeon suggested it was time to consider treatment options. Unfortunately, I had poor hearing in one ear from a childhood accident, and the acoustic neuroma was on the side of what was my good ear. He said that if he operated, I would lose hearing in that ear, and suggested Gamma Knife would be effective with the benefit of possibly preserving hearing for a longer time and a consultation was scheduled at the Gamma Knife Centre at Toronto Western Hospital.

When treatment possibilities for the acoustic neuroma had to be considered, I decided to learn more about acoustic neuromas. I found the ANAC website, became an ANAC member in 2013, and attended a Toronto Chapter meeting hosted by Kathryn Harrod and Lynda Nash, which was very informative and reassuring. Carole Humphries has also been in touch over the years and has sent me information and provided recommendations.

Following my assessment, I underwent Gamma Knife at Toronto Western Hospital on September 04, 2013 at 5:45 AM. I only experienced minor pain for a few days where the pins were used to attach the frame. However, during the next few months balance and dizziness during motion seemed to worsen. I contacted a nurse at Toronto Western and received a referral for vestibular therapy. The exercises were helpful, and I continue to do most of them at home. Hearing gradually declined in the acoustic neuroma ear to the point where a standard hearing aid would only amplify a distorted sound. A bicros hearing aid configuration, where a microphone is used on the bad side to transmit to a hearing aid on the better side, has been helpful.

My understanding is that Gamma Knife is effective in stopping acoustic neuroma growth in the majority of cases. Follow-up MRIs in 2015 and 2016 showed that the tumour was getting smaller. However, an MRI in 2018 indicated regrowth, accompanied by the start of new symptoms. I experienced occasional facial twitching and a change in taste sensation. Balance problems and dizziness were becoming somewhat worse. Another Gamma Knife treatment was scheduled, which took place on November 07, 2018. A follow-up MRI on May 08, 2019 seemed to indicate that the tumor was getting smaller, which was confirmed in an MRI on May 26, 2020. The facial twitching has disappeared, but I have recently developed watering in the right eye while eating.

Another MRI will be scheduled for May 2021. My understanding is that if the tumour starts to grow again, I would probably be a candidate for a third Gamma Knife treatment if needed, but it is unlikely, and third treatments are not common.

I am generally in good health except for imbalance, dizziness when moving, poor hearing and change in taste when eating, which I attribute to the acoustic neuroma. Walking has become more difficult, partly because of arthritis, stiffness, and loss of muscle mass, which is not unexpected at age 79. Using a cane has been helpful. I am trying different exercises to maintain mobility and have recently taken up Nordic pole walking. It was unfortunate that the acoustic neuroma affected what was my good ear and I now have to rely on hearing through what was my bad ear. Even with a bicros aid configuration, understanding speech can be difficult. Driving used to be enjoyable, but I now avoid long trips and heavy traffic and therefore have not had a problem.

My wife and I recently moved from Brampton to a condo in Oakville to be close to our son and family. There are many seniors in our building and several in our age group have more severe health problems and are less mobile than we are. We are fortunate that we can still do most of what we want to do, for which I am thankful.

On another note, I have been participating in a Mayo Clinic study “Prospective quality of life in patients with acoustic neuromas” with Dr. Mathew Carlson and Dr. Michael Link since 2017.

Alex's Story: A Doctor Becomes a Patient

joanne — Tue, 05 Jun 2018 18:56:10 +0000

Alex's Story: A Doctor Becomes a Patient joanne Tue, 06/05/2018 - 14:56

Alex Medjessi is a 66 year old retired family physician who was diagnosed in October 2017 with a right-sided acoustic neuroma, approximately 2 cm in size.

Dr Alex Medjessi

I had been experiencing hearing loss in the right side with some buzzing.

I was fortunate to talk with ANAC’s Executive Director, Carole Humphries, very soon after my diagnosis. She was very supportive and knowledgeable and put me in touch with the fantastic support group in Kitchener, which just happened to be meeting one week after my diagnosis. I found it so helpful to chat with others who have an acoustic neuroma. Some were “watching and waiting”; others had decided to undergo Gamma Knife Radiotherapy or surgery.

With Carole’s help, I obtained an appointment in November to see Dr. Zadeh, a neurosurgeon oncologist at Toronto Western Hospital. We discussed the risks and benefits of Gamma Knife and surgery, and she recommended a follow-up MRI in six months.

I also saw Dr. Parnes, ENT specialist at University Hospital in London, Ontario. He recommended a follow up MRI in April 2018 with the possibility of having surgery, explaining to me the benefits, risks and complications of having surgery to remove the acoustic neuroma. Stereotactic radiation surgery is not available in London.

After learning about both procedures, I felt that Gamma Knife Radiosurgery would be my choice for treatment. Gamma Knife Radiosurgery is a very precise form of radiation therapy that focuses intense beams of gamma rays with pinpoint accuracy to treat lesions in the brain.

While away in Florida for five months, my condition stayed the same. Upon returning, I had a repeat MRI done in April 2018 with a follow up appointment with Dr. Zadeh. My acoustic neuroma had grown slightly and, after discussing my options with Dr. Zadeh, I decided to go ahead with radiosurgery. She expressed that “I was a good candidate for treating the tumour with Gamma Knife.”

In May, I attended the Gamma Knife Clinic at Toronto Western Hospital (TWH) where I met with Dr. Gentili, a neurosurgeon and Dr. Tsang, a radiation oncologist. An appointment was made for June 26 for pre-op and planning MRI, followed by Gamma Knife on June 27.

The Leksell Gamma Knife is designed specifically for treating lesions in the brain and has the greatest precision and accuracy of any radiosurgery system to date. Although each beam has very little effect on the brain tissue it passes through, a strong dose of radiation is delivered to the place where all the beams meet. Radiosurgery for tumour treatment works by damaging or destroying the DNA of tumour cells so that these cells cannot reproduce or grow. Over time, the brain tumour shrinks.

I arrived at the Toronto Western Hospital very early in the morning and was greeted by the nurse who would follow me throughout my procedure. She offered me some Ativan, which I declined. Dr Gentili injected the local anesthetic where the pins would be placed and put on the Leksell frame with four pins to secure it to my skull. At this point I wished I had taken the Ativan!!

I was taken for a CT scan. The next two hours to determine my individualized plan and start treatment seemed like an eternity, i.e., the radiation necessary for my acoustic neuroma —the strength of the beams, the angles from which they arrive, the number of times they are discharged, and the exact destination based on Dr. Tsang’s orders.

Next, I was helped onto the table and made comfortable while they put on my mp3 player and started treatment. Halfway through my procedure I had to urinate; however, they were able to stop and continue to finish the procedure afterwards. Thankfully, I did not have to be catheterized – a medical procedure that no man or woman relishes that facilitates direct drainage of the urinary bladder.

Once the procedure was finished, Dr. Tsang removed the frame from my head and I was wheeled back to the post-op area where the nurse took my vital signs. My blood pressure was high, most likely due to the pain. I was given a narcotic intravenously. Steri-strips, which are very small and thin, were applied on the pin sights on my forehead. After about an hour, my vital signs were normal, and I was discharged. A follow-up MRI was arranged for March of 2019.

From the hospital, I walked back to the car with my wife and had no balance problems. I felt good except for the pain and some bleeding from the pin sights. While traveling back home, hunger set in and my wife and I stopped for dinner. I was feeling fine.

By the time we arrived home, the only problem I had was that there was still some bleeding from the site and some pain, for which I took some Tylenol #3. Sleeping was difficult that evening due to pain where the pins had been inserted.

However, I felt well enough to go golfing in the morning and walked a whole nine holes. My balance was slightly affected but it did not interfere with my game. After 36 hours there was no bleeding and the pain had subsided. No further medication was needed. The following morning, I went golfing again. My balance was back to normal and I felt about the same as before my surgery. I still have some hearing loss and buzzing in my right ear.

I would like to thank Dr. Zadeh, Dr. Gentili, and Dr. Tsang and the whole Gamma Knife clinical staff. Also, I would like to thank all the wonderful people from the ANAC Kitchener – Waterloo Support Group for their caring and continued support.