cyberknife

Shelley's Story: A Journey Toward an Acoustic Neuroma Treatment Plan

joanne — Wed, 05 May 2021 01:58:25 +0000

Shelley's Story: A Journey Toward an Acoustic Neuroma Treatment Plan joanne Tue, 05/04/2021 - 21:58

Shelley Lacroix is an Ottawa resident who explored treatment options available throughout the world.

Shelley Lacroix

My story began with a simple ear ache that would not go away. After trying an off-the-shelf antibiotic and, subsequently, a cortisone prescription to no success, I was referred to the ENT clinic at the hospital.

The doctor at the clinic told me that I had age-related hearing loss. I had a hard time accepting this. My hearing up to that point had not been an issue. My tests showed 60% hearing in one ear and 80% in the other with 100% speech recognition. On the off-chance that my condition was attributable to sudden hearing loss, my doctor treated me with four intratympanic dexamethasone injections in my middle ear. I assure you that was not a pleasant experience!

I continued to experience pressure and aural fullness in my ear. At times, it felt like something was pushing against my tympanic membrane. I was then prescribed a course of Prednisone which led to no change in my condition. At this point, another doctor in the clinic referred me for a contrast MRI. In spite of the doctor’s request, the technician refused to give me contrast. As a result, I had to return for a second MRI after the first one revealed there was indeed a problem!

My contrast MRI report indicated that I had an acoustic neuroma (AN) measuring approximately 2 x 1.8 x 1.4 cm, approximately the size of a pecan half. I was relieved to learn that it was benign. During a video-conference with an ENT surgeon and neurosurgeon, the ENT surgeon informed me that I was not a suitable candidate for middle fossa surgery because my acoustic neuroma was too big.

Alternatively, the neurosurgeon proposed translabyrinthine surgery which would result in complete hearing loss, a severed vestibular nerve and could lead to partial facial paralysis or numbness and the possibility of a permanent or temporary palsy (droopy eye and droopy lip). Who wants to gamble with that I thought?

I bought myself time by agreeing to accept a “wait and see” approach in monitoring the growth of my AN. I made it my personal goal to learn as much as I could on the topic of ANs and treatments available in Europe, Canada and the USA. I am glad that I did this as soon as possible as I discovered that my treatment options would become limited if I waited too long to address my condition.

I read journal articles from the Journal of Ontology and Neurotology including a study about Aspirin halting the growth of sporadic vestibular schwannomas. I came across a study from Harvard where stem cells had been injected in the cochlea of mice to restore cilia and hearing. Unfortunately, no human trials have been undertaken.

I also explored whether the palsy could be surgically treated and consulted two independent doctors. The otolaryngologist, specialist in head and neck surgery, told me about the problems related to droopy mouth surgery and facial paralysis, and recommended the CyberKnife as the best course of treatment. I also consulted an ophthalmologist who said it was impossible to correct a drooping eye and achieve a natural look.

After receiving this information, I proceeded to conduct extensive research to explore alternative treatments. Through my research, I found out that Munich, Germany, has the most current CyberKnife S7. According to Medical Device News Magazine, the S7 offers “advanced precision, real time artificial intelligence, motion tracking and delivers radiation treatment in as little as 15 minutes”. I contemplated flying to Munich for treatment but then...COVID made things very complicated to do that safely. Along the way, I learned that Canada doesn’t have a CyberKnife S7 (2020 generation) and my city has the CyberKnife VSI (2009 generation). Also, I discovered that Hamilton and Montreal have CyberKnife M6 (2012).

Determined to find a better solution, I explored various US options in California, Colorado, Florida, Connecticut, and Pennsylvania, among others. During this research, I discovered a link to the American Acoustic Neuroma Association (ANA) and read the information provided by this group. By this time, my husband engaged in my research and stumbled upon the Acoustic Neuroma Association of Canada (ANAC). What a revelation! I became a member and immediately received a phone call from Carole Humphries, Executive Director, who offered both research and evidence-based data. The publications answered most of my questions, but not all. Within 24 hours, Carole connected me with dozens of people across Canada who shared their experiences. This made me realize I was not the only one facing this rare tumour.

It was through ANAC that I learned about Gamma Knife. Carole indicated that Gamma Knife was an alternative to CyberKnife. It was then that I realized that I had been far too focused on CyberKnife.

From that point on, I channelled my energy into exploring the pros and cons of both CyberKnife and Gamma Knife. From the University of Virginia Medical School website, I learned that Gamma Knife is far less invasive than surgery, uses 100X less radiation than CyberKnife and has a radiologic accuracy better than 0.3 mm. The Rocky Mountain Gamma Knife Centre website in Colorado indicated that Gamma Knife has a radiological accuracy down to 0.15 and that Gamma Knife Perfexion is safer because of its tissue-sparing characteristics, and its headframe prevents patient movement during treatment. According to the Mayo Clinic website, Gamma Knife is 95-97% effective and requires only one session to treat an acoustic neuroma. I gained insights

from the Journal of Neurosurgery about long-term outcomes following Gamma Knife radiosurgery (GKRS). The low incidence of developing hydrocephalus after GKRS and the preservation of hearing 15 years post Gamma Knife radiosurgery confirmed that Gamma Knife was the right option for me.

According to the Orange County CyberKnife and Radiation Oncology Centre website in California, the CyberKnife requires multiple treatments, is 90% effective, and could damage the outer targeted area. The odds associated with Gamma Knife were in my favour.

After completing the bulk of my research, I requested that my family doctor make a referral to Toronto Western Hospital. I compiled all of the paperwork that she required for the referral (i.e., audiology testing, MRI reports, MRI CD, medical history) to facilitate my Dr.’s task and expedite the referral process to Dr. Zadeh, head of neurosurgery of the University Health Network.

Dr Zadeh offered me two treatment options during a telephone meeting: 1) Rectosigmoid surgery which would preserve my existing hearing in combination with Gamma Knife six months post surgery to treat the remaining tumour; or, 2) Gamma Knife. I opted for the least invasive surgery, and I am currently awaiting word from the Gamma Knife Clinic for the date of my treatment.

During my discussion with Dr Zadeh at Toronto Western Hospital, I was comforted to know that the hospital staff focuses on the quality of life of the patient and that their goals are congruent with those of the patient. I knew my goals and shared them with the surgeon in order to ensure quality of life. My goals were simple: preserve my hearing, preserve my facial nerves, and preserve my vestibular nerve. From my standpoint, any treatment satisfying these goals would allow me to live my life to the fullest.

My journey made me wonder how many people out there would have relied on one opinion and had the translabyrinthine surgery with its inherent risks, as proposed by the first surgeon. I was thankful that I connected with ANAC and was able to be guided in the right direction to a team of leading neurosurgeons and researchers in the area of acoustic neuromas and brain surgery. It is important for us to realize that perhaps surgeons recommend surgery because that is their specialty. I was so pleased to learn that Dr. Zadeh and her team do both microsurgery, and stereotactic radiation surgery based on the individual needs of the patient and the size of the neuroma. I was happy that I was given alternatives to my treatment plan.

To close off, I would like to leave you with this final thought. It is important to make an informed decision about any recommended medical treatment plan.

You, alone, control the journey and must research your condition and critically examine all the options available. It is critical to formulate precise questions so that the experts can fill in your knowledge gaps. Once you are confident with your understanding of your condition and possible treatments and their associated risks, you can then, if given a choice, select a treatment plan that satisfies your goals.

The Silver Lining: Nicole's Journey with an AN

joanne — Fri, 04 Dec 2020 15:48:32 +0000

The Silver Lining: Nicole's Journey with an AN joanne Fri, 12/04/2020 - 10:48

Nicole Poulin is a Retired Registered Nurse living in Hawkesbury, Ontario with her two daughters.

Nicole Poulin

I was asked to share my journey with an acoustic neuroma and I agreed because if this could only help one person, it was totally worth it. First, let me share with you a little bit about me. I am a single mom of two beautiful daughters I adopted from China who are now both university students. They are my pride and joy and cannot imagine my life without them.

I worked as a registered nurse for 39 years in different departments such as ICU, and dialysis followed by 5 years, in a diabetic clinic of a hospital in my hometown in Eastern Ontario. I was still working when I started my AN journey in July 2017.

I was enjoying a beautiful summer with my girls and friends and by mid-July I started feeling a numbness on the right side of my tongue. I had been to the dentist a few weeks before so I thought it was probably related to the freezing for the tooth repair. I was feeling good except for headaches, but this wasn’t unusual to me so I thought nothing of it. A few more weeks went by and the numbness became more pronounced. I consulted my dentist as the numbness was on the same side the freezing was done. After some x-ray and exams, the dentist told me he did not think it had anything to do with the freezing. I still believed nothing serious was going on, a s I was feeling good except for the numbness. For a few months, I had noticed some slight balance issues when I was walking to work but I had not related that to the numbness. I became concerned at the end of August, when the right side of my face also started to be numb and there was a feeling of fullness in my right ear.

I had been planning for retirement, so at the end of August, I notified human resources that I was officially retiring January 1st 2018 and taking the month of December for holidays. I was so excited about the last few months left at work after 39 years. Suddenly, one morning, getting ready for work I started having tinnitus in my right ear. At that moment, I knew it was time to call my doctor and after listening to my symptoms, he wanted to see me at the end of my shift. My wonderful family doctor that I had known for the past 30 some years looked quite concerned and asked for an urgent MRI and audiogram. Since the beginning of the tinnitus I had started to be worried and now it was getting worse by the minute.

The next day, I called for an audiogram appointment. They had a cancellation that morning and they offered me the spot. As soon as the audiogram was done, the audiologist told me I needed to see a specialist asap. I came out of that office thinking the worst. Back in my department at work, I was in tears when I called one of my best friends at the hospital. After we hung up she happened to see two doctors who I had worked with before and they arranged for me to see an ENT that same day.

I was very anxious. My MRI which was scheduled for Sunday September the 24th. I am sure that all of you know it can be quite a claustrophobic experience. As I was leaving the x-ray department, the technician looked at me and in a very soft voice she said, ‘’ Good luck madam, your doctor will get the result within a week.’’ Right then I had a feeling it wasn’t good news. The next day, I went to work and in the afternoon my doctor called and asked me to drop in at the office at the end of my shift. I was so anxious but managed to finish my work, and got my charts ready for the next day not knowing that would be my last day at work. I called my sister and asked her to come with me to my appointment as I knew I needed support. As I entered my doctor’s office, being the last appointment of the day, it was very quiet. The lights had been dimmed and as I sat in the waiting room, I told my sister, that this was not normal. The secretary and nurse I had known for many years were also avoiding eye contact with me. After a few minutes, my doctor, not the nurse, came to get me and I knew it was not going to be good news. I had shared many things with my doctor, we worked together, he helped me with the adoptions of both my girls and had always been very good to me and my family. He told me the MRI showed a brain tumour but he could not tell me what type of tumour at that time. He told me he would arrange for me to see a neurosurgeon in Ottawa, gave me a note for sick time for my work, and told me we would keep in touch.

Leaving the office, I was devastated. I tried very hard to calm down as it was time to go home to my youngest daughter. She could not see me like that as we were still not sure of the final diagnosis and I didn’t want to worry her too much. I will spare you the next few weeks where I had very bad days thinking the worst. I had a lot of support from my family and daughters but especially from my oldest daughter who was studying biology at university and said that all

my symptoms looked more like an acoustic neuroma, something I had never heard about before. Doing some personal research, I had hope. By now however, I had completely lost my hearing on the right side.

Finally, my appointment on October 2 with the neurosurgeon, Dr John Sinclair at the Ottawa Hospital arrived. I was so anxious waiting to see him because in a few minutes I could receive the worst news ever and my life would never be the same BUT it turned out to be one of the best days of the last few weeks. He was one of the most reassuring doctors and proceeded to tell me all about my tumour, which was most probably an acoustic neuroma. The tumour was approximately 3 cm and compressing my brainstem. He ordered an MRI with contrast. He indicated the need to proceed to surgery urgently due to the compression if the next test confirmed his diagnosis. He discussed radiosurgery but according to him, the tumour was too large and the compression of the brainstem was too severe. He indicated surgery would be done with facial nerve monitoring to protect the facial nerve function and that they would most probably have to leave a small residual tumour to protect my facial nerve.

Depending on the size of the remaining tumour and further MRI post-surgery there could be indication for radiosurgery called CyberKnife to make sure the remainder of the tumour would not grow back. I was told that I would most probably not regain my hearing, but believe it or not I left the office in a state of euphoria thinking I will get through this. I did not have a glioblastoma (cancerous tumour), something that had been on my mind for the past few weeks. I did not mind the surgery at that time, as there was a cure and I was so relieved. I called my girls, my family and friends and from that point on I felt positive about the whole thing. Life was good to me after all.

Within the next few days, I had another MRI with contrast, a scan, and I was back in Dr Sinclair’s office a week later; on the 19th of October to get the final diagnosis of a 3 cm vestibular schwannoma with compression on the brainstem. I was told the surgery would be booked within the next few weeks but to go to the emergency room if I ever got worse headaches, nausea and vomiting. I came home, got ready for the surgery, and spent time with friends and family.

Finally, on November 9th, I underwent surgery for eight hours. Everything went smoothly, 92% of the tumour was removed with no facial nerve damage. I spent the first 24 hours in an acute care recovery room. I was a little nauseated and the pain was well managed with the medications. I was transferred to an intensive care neuro floor for the next three days and things continued to improve. Six days post operatively I was discharged home.

The road to recovery went well. By January 2018, I officially became a retired nurse and I started to walk on a training track in my hometown to regain my strength. In late January, I got another

MRI and at my second post op follow up appointment, it was discussed that the CyberKnife radio treatment could be a good option for me to make sure the remaining tumour would not grow back. Six months after the surgery, on May 1, 2018, after more scans and a head mask molding done, I received a 45-minute CyberKnife treatment. I was a little apprehensive but the technician took her time explaining what was going to happen throughout the treatment. She was very reassuring. It was pain free, and time passed quickly as I was invited to select a movie to watch on the ceiling during the treatment. I experienced no side effects.

MRIs have been scheduled every 6 months since my surgery, and on my last one it showed the remaining tumour was now getting slightly smaller and I have graduated to once yearly. I cannot thank enough both my doctors for the great care I have received. I am now enjoying my retirement; life is really beautiful. The deafness on the right side is not a big problem for me at the moment so I have not yet looked into any kind of hearing aid. As time goes by, my balance is getting much better and I can say I feel like my own self again.