Patient Stories: Acoustic Neuroma

"In February 2018, my acoustic neuroma (AN) was discovered, incidentally, by CT scan. An MRI confirmed the diagnosis of a 1.7-cm mass. While some folks might tell you to “stay away from the internet,” I believe that knowledge is power, and it was exactly what I needed in order to effectively cope with a serious diagnosis. As a registered nurse, I also knew the importance of seeking out the most talented practitioners in their field. While having a premier team doesn’t guarantee a problem-free experience, it certainly does give you the best possible odds of limiting complications. Finding an outstanding team to treat my acoustic neuroma was my priority and required some digging.

I started with the National Institutes of Health (NIH) and became familiar with AN studies and the physicians involved. I doggedly researched and reached out to a Facebook support group and cross-referenced sources. It didn’t take long to create my “shortlist,” a very short list, with two names at the top: Rick Friedman and Marc Schwartz. Imagine my delight to discover the two had recently reunited, forming the ultimate AN “dream team” at UCSD.

To complement their expertise and skill, UCSD’s online presence was informative and user-friendly. Kris Siwek, the patient navigator, immediately put me at ease and was an exceptional resource throughout the treatment process. From the beginning, I was awed by the team’s accessibility and timely communication. I had multiple virtual consults with Kris and Drs. Friedman and Schwartz. At that time, we all agreed that careful surveillance was a reasonable course of action. Five months later, a repeat MRI proved that my tumor had grown to 2.2 cm. Although usually slow growing, my AN was not and the decision for immediate treatment was an easy one.

In November 2018, I flew to San Diego and proceeded with a retrosigmoid craniotomy. The surgery was a success and a full tumor resection was accomplished, though my hearing could not be saved. I was stunned to wake up without any vertigo, nausea or vomiting, or any degree of facial paralysis. By evening, I was hungry and thirsty and insisting on watching TV and getting regular updates about Election Day. The ICU nurses were outstanding, and I forged new friendships that I will keep forever.

Recovering in San Diego was a delightful bonus, which offered my husband and me stunning scenery, incredible restaurants and fun local culture. We found a lovely and inexpensive oceanside apartment on VRBO. Three days post-op, I was walking the beach and collecting seashells; by Day Four, I was up to 6 miles strolling along the beach. While my husband worried that I might be doing too much, I felt strong, resilient and in tune with my body’s cues. The peaceful surroundings allowed a focused renewal on the simple joys of life, and I found the proximity to water was central to my healing and recovery.

On my last full day, I knew it was time to conquer one of the many surfer trails which lead from the pristine sandy beaches to the upper sheer cliffs. I am positive this wasn’t an officially sanctioned post-op activity by the UCSD team, but I scaled a 50-foot steep rock climb with confidence. At the top, I was blown away when I saw a familiar face running along the path towards me. In a city of millions, it was none other than Dr. Rick Friedman himself. He was as stunned as I, and exuberantly happy about my hearty progress. In that instant I knew, as I had known instinctively along the way, all the choices I had made were the right ones for me. I was exactly where I needed to be. "

–Jennifer Seymour

"Then, like most AN patients, I began the research process. As I learned more about treatment options and potential outcomes, my relief transformed into anxiety. The questions are many: Which treatment approach should I pursue? Which team of doctors should I choose? Is treatment right for me at all now, or should I watch and wait? All the "what-ifs" — hearing loss, facial paralysis, surgical complications — added up and made the decision-making process extremely challenging. My mantra became "Just do the next right thing, one thing at a time."

I sought several opinions on the East Coast, where I live. One team of doctors ultimately recommended a translabyrinthine approach even though my hearing was fully intact. Another surgeon recommended I watch and wait, telling me to "go home and forget I had a brain tumor." These conflicting opinions left me more overwhelmed and confused than ever, and I reached out to an online support group for help. That's when someone suggested contacting Dr. Friedman.

In my toughest and most overwhelmed moment, I reached out to Kris Siwek, the program's patient navigator, on a Friday evening. I consulted with Dr. Rick Friedman the following day and he recommended a middle fossa approach, an option no other surgeon had offered me and that carried a greater than 50 percent chance of preserving my hearing. After another phone consultation a few days later with both Dr. Friedman and Dr. Schwartz in which they patiently addressed my many questions, and after speaking with several of their previous patients, I had a strong feeling that this was my best chance for the outcomes I hoped for. My decision was made. We were going to San Diego.

My surgery in November was one of the first in the new Acoustic Neuroma Program at UC San Diego Health, headed by Dr. Friedman and Dr. Schwartz. The logistics of traveling and pre-/post-operative appointments were smooth, and my husband and I were in San Diego for 11 days. Everyone I worked with was skillful and caring, from physical and occupational therapists to audiologists, office staff, nurses, residents, and of course the surgeons themselves. Communication, so important in times of stress and uncertainty, was consistent and clear.

My outcomes were better than I'd ever hoped for: full tumor resection, 100% hearing preservation, and no facial paralysis. My husband and I were comfortable in the hospital — a beautiful new facility that felt like an upscale hotel — and spent a few days resting at a nearby hotel before my follow-up appointments. Returning home on Thanksgiving Day to our children and a house full of family was a moment I will never forget! Eleven days after my brain surgery, I was out in a field cutting down our family Christmas tree, my favorite tradition and something I thought I would surely miss this year. My recovery has been as successful as my surgery, and I could not be happier with my decision or more grateful for the quality of care I received."

– Lindsay Evermore
Guilford, Conn., March 2018

"My hearing did return to normal after this episode, after I also received an intratympanic steroid injection. Instead of ruling out a tumor, though, the MRI showed a ~1 cm size mass in the inner auditory canal and I was diagnosed with an acoustic neuroma.

Together with my wife, I then saw several specialists in both New York and Los Angeles. After our visit with Dr. Friedman, it was immediately clear to both of us that we would stay with him. Not only did he seem to have a practically unmatched amount of experience and achieve excellent outcomes in his patients, he was also willing to accommodate our desire to understand as much as possible about the condition and treatment options, which was very important to us as professional scientists.

Because of the tumor's relatively small size and the fact that it was still completely contained in the canal, we first chose a watch-and-wait approach with MRIs every six months. Although the tumor appeared to remain stable in size over the next two-and-a-half years, I experienced several episodes of transient hearing loss.

Things changed dramatically in January 2018 when I developed a terrifying new symptom: while taking a hot shower, the right side of my face froze into a grotesque grimace with the eye closed and mouth pulled up. It probably only lasted for a minute, but it felt like the longest minute of my life and it happened again a few minutes later.

 I was with my wife in New York at the time, who immediately sent a frantic email to Dr. Friedman. Despite it being a Saturday morning, he called us right away and arranged a prednisone script. From then on, I avoided long hot showers (something I always used to enjoy), but my eye would still start twitching even from a lukewarm brief shower. At my next MRI two weeks later, it became clear that the tumor had grown by about 2 mm overall compared to the initial assessment. Moreover, my serviceable hearing had deteriorated to only ~12% word recognition.

Although it was clear that the time had come to get the tumor out, I struggled with this realization. I am a professor at a major university where I conduct basic medical research, which means the world to me. I was very concerned that surgery would leave me unable to continue this work. Although we had originally discussed the middle fossa surgical approach for me, my poor hearing now made the translabyrinthine approach the more appropriate choice and we made tentative plans to have the surgery about two months later.

However, this plan had to be dramatically accelerated when I had a severe vertigo attack only a week later. It woke me up in the middle of the night and, for the next ~36 hours, I was completely incapacitated, lying still in a dark room trying (unsuccessfully) not to be sick. This attack left me essentially deaf in the right ear. Most frighteningly, my face was no longer symmetric and I could not raise the right eyebrow all the way or whistle. The only priority now became saving my facial nerve. When we sent pictures of my face to Dr. Friedman, he responded by saying that I needed treatment as soon as possible. Later the same day, Kris Siwek called us to say that, because of a cancellation, there was an available opening exactly one week later and we jumped at the chance.

During the surgery, my wife received regular updates from the OR nurse and Dr. Friedman came out at one point and told her that my tumor appeared to be a meningioma. Upon waking up, the first thing I remember is checking whether I could still move my face and whistle. It was such a relief to realize that it still worked. Happily, I hardly had any vertigo, probably because the nerve had already been functionally dead before the surgery.

It has now been close to two months since my surgery and I feel that I am mostly back to normal, although I still tire more easily and sometimes just need to sit and take a break. Of course, I am also still adjusting to having only one-sided hearing now. Because my tumor ended up being a meningioma, I will continue to need follow up MRIs and there is a small chance that I may have to deal with this thing again at some point in my life. Still, I am extremely grateful that the surgery went so well and is behind me now.

I cannot say enough good things about the staff and the setup at Jacobs Medical Center. I really feel that if one needs to have surgery, there cannot be a more comfortable place for it. All the rooms, even in the ICU, were private and included a sleeper couch that my wife confirmed to be rather comfortable. All the fellows, residents, nurses and assistants without exception were amazing, so competent and kind. Even the food was not bad! Of course, the most important component in all of this are the surgeons. I can say with complete candor that Dr. Friedman and Dr. Schwartz are my heroes and I will forever remain grateful to them."

– André Hoelz
April 2018

"A repeated MRI six months later showed no growth, and my symptoms were about the same. I could tell my hearing was getting worse only when someone was sitting next to me and I could hardly hear them speak. Looking back, I realized that I did have previous warning signs, such as distorted hearing in my right ear when wearing my cell phone ear plug. I just changed ears, not giving it much thought!

In 2016 I started experiencing fatigue. It was about one week out of each month. Multiple visits to a variety of specialists, nothing showed up as the cause. It was a year later that I realized that fatigue is a common symptom of AN. My MRI in September 2016 grew just 1 mm, to 1.4 cm. I was just coasting along, and really not too worried.

In 2017 I was turning 65 and was going on Medicare. After many years of paying for private insurance with very high deductibles, I was looking forward to this reward to getting old! I made the decision that maybe I would take care of the AN and opt for radiation. Not very invasive, quick recovery, and I was sure with my small tumor I would have success. So, in August of 2017 we repeated the MRI and I called Dr. Friedman to say, "let's do radiation"! Unfortunately, the tumor had grown quite a bit, due to the fact that a cyst was growing around it. It was recommended that I schedule surgery for retrosigmoid.  (this was changed to translab the day before surgery due to the fact that I had so little hearing left; it was not worth trying to save. I now have single-sided deafness). 

Still the optimist, I went into surgery expecting to breeze through. And I did! I do believe a lot of recovery is positive thinking. Yes, many do have more difficult outcomes, but I believe that staying positive helps. Of course, having one of the best surgical teams in the US is also a big help! The cyst was pretty messy, I was told, and wrapped around my facial nerve. Even though testing the nerve throughout the surgery showed activity, I did end up with temporary facial paralysis. I am 18 weeks post-op, and about 50 percent improved. I was told recovery would take 6-12 months, and I think it will be totally gone by that time. 

Honestly, three weeks after surgery I commented that I could not even tell I had brain surgery! Because of my hearing being poor prior, I think my adjustment to balance with no hearing on that side was easier to get through. I had no headaches, and very little pain in the first two weeks only. Walking is the best way to heal, so heed advice to do your walking!

Another source of wonderful support was a Facebook group that I joined after diagnosis. It was there that I was encouraged to get multiple opinions. My first visit to a specialist did not leave me feeling like there was good "customer service." Everyone kept mentioning Dr. Friedman, so I made an appointment to visit him at UC San Diego Health. The day after I called for the appointment, I received a call from Kris Siwek, his patient navigator. I knew by that call that I was in good hands, and patient care was their upmost priority! 

 Three weeks after surgery I took a walk with my family at the local beach boardwalk. I made the three-mile walk with no assistance! I felt that the three-week mark was the beginning of feeling "normal," and after that I saw more improvement every week. Now I am counting by the months! I know it will be almost a full year before most symptoms are gone, but at this point I have made very few adjustments and have continued my work and personal life as before.

So, now I wear the badge "warrior" with pride and am grateful for my new group of supportive friends who have experienced what I have gone though as well. I have been told that if you have to have a brain tumor, this is the one to have! I'm grateful for the outcome and the excellent care I received from Drs. Friedman and Schwartz, plus the staff at UC San Diego Health. They all earned an A+!" 

–Julie London
April 2018

"This is when the frantic research of the tumor, the treatment options and doctors began. The point I would like to make, to anyone that may be deciding on a treatment plan, is to DO YOUR RESEARCH! You will most likely receive different opinions from different doctors, and you may find that you are a candidate for one, or all three of the treatment options (observation, radiation or surgery). Become a very well educated patient, and this will make you much more comfortable when deciding on a treatment plan. 

On August 14, 2017, I received my first medical opinion from a neurotologist/otolaryngologist here in Denver. This appointment revealed the dilemma I would face for the next month or two, which was choosing a treatment plan. Due to my age, the tumor size and some other factors, I was a candidate for both radiation and surgery as treatment options. After a month or two of research and meeting with eleven different doctors, I conducted an analysis of my medical opinions by compiling all of my information into an Excel spreadsheet. This helped me make the decision of surgery as my treatment plan.

The relief of having made that decision only opened up the door to another question: who should I chose to perform my surgery? I chose Dr. Schwartz and Dr. Friedman at UC San Diego Health because they were confident, experienced and were able to demonstrate excellent treatment outcomes. They were also very comfortable to speak with and patiently answered all of my questions at each visit. Not only would I have two great surgeons working on me, I would also get to experience treatment in a new state-of-the-art medical center in San Diego. It was a huge relief to have determined a course of action and I had great confidence in my decision because of the doctors I chose.

My next struggle was deciding on retrosigmoid vs. translabyrinthine surgery. The chances of saving my hearing were very low (argument for translabyrinthine) but at the last minute I decided to try retrosigmoid because of the confidence I had in the doctors to protect my facial nerve.  

My surgery on December 15, 2017, was a success! 100 percent of the tumor was removed and Dr. Schwartz and Dr. Friedman were extremely careful around my facial nerve so that I have absolutely no facial weakness. I had no spinal fluid leak and my head healed up nicely. Also, my tinnitus has improved slightly. Although I chose the retrosigmoid approach to surgery, the tumor ended up being too big to save my hearing in the right ear.

Immediate recovery was definitely a challenge but the staff at UC San Diego Health, especially the nurses in the ICU, were all amazing. By the morning of day three I was walking around the ICU floor. My surgery was on a Friday and I was released from the hospital on a Monday (with no narcotic medicine). I had headaches that gradually dissipated over the next few weeks.  

I recovered in California for ten days and then went back to Colorado. I found myself a vestibular physical therapist with a neurologic specialist certification to help in my recovery efforts. Physical therapy consisted of balance exercises, eye movement exercises and light cardio workouts, which were all instrumental in my speedy recovery. I went back to work three months after surgery and my life is pretty close to normal again.

I started running earlier than expected and by three and half months after surgery I was running up to three miles. I now have enough confidence in myself that I signed up for a half marathon in September 2018. I also tested my mountain biking abilities at three and a half months after surgery, and was able to complete a respectable ride so I am confident that further and harder rides this summer will not be an issue. My first swing of the golf club happened at just shy of three months after surgery and I played 18 holes a few weeks later. I was also able to go hiking in Rocky Mountain National Park by around three months after surgery. The point being that you may be able to get back to the normal activities of life at a quicker pace with some work and determination.

Living with single-sided deafness (SSD) has been an adjustment for sure, but it hasn't been too much of an issue for me. Ninety percent of my day is unaffected by it. Having an acoustic neuroma has been quite a journey but I kept telling myself that things could be a lot worse in life. Conducting research led to complete confidence in my decision which in turn provided a relief of stress. Getting myself into good physical health prior to surgery contributed to my speedy recovery. Maintaining a positive attitude helps you get through life no matter what you are dealing with. I hope this instills some confidence in anyone affected by an acoustic neuroma."   

– Daniel Small
April 2018

Acoustic neuroma patient navigator Kris Siwek, Dr. Rick Friedman, patient Amanda Thibodeux and Dr. Marc Schwartz.

" By the next morning, I could not get out of bed. The room was spinning, I was vomiting and I had involuntary movement of my eyes which can be associated with vertigo.

We started our research on the web and social media groups. The internet can be overwhelming and created a lot of anxiety for me and my husband. We joined the Acoustic Neuroma Association, which gave us the most up to date information. We were able to listen to webinars on acoustic neuromas and received good advice regarding questions to ask prospective surgeons.

Although there were different avenues to consider, I never wavered in my initial desire to have the tumor removed. We met with two of the referred surgeons near my hometown. We went prepared with a list of questions and concerns. Considering my age, the surgeons recommended middle fossa surgery, which would give me the best chance to avoid a loss of hearing. I have much gratitude to the surgeon I met in Houston, who kindly declined my case in order to recommend Dr. Freidman. He knew he was the best and most experienced with acoustic neuroma surgery.

I connected with Kris, Dr. Friedman's patient coordinator, soon after meeting the surgeon in Houston. As an acoustic neuroma survivor herself, Kris was calming and spoke with an abundance of confidence. Kris arranged a phone consult with Dr. Freidman and Dr. Schwartz.

They both recommended the middle fossa surgery. I sensed their self-assurance in their ability to remove the tumor and preserve my hearing. Shortly after that conversation, we were on our way to San Diego to meet them in person.

The atmosphere in their office was one of comfort and caring. It felt like family. They had a surgery date opening in two weeks and I scheduled my appointment.

The surgery facility was beyond our expectations. My husband, a medical professional, had never witnessed a hospital so well equipped. The hospital staff was top notch. They went above and beyond to make our stay the most comfortable. I am very happy with my decision to have had my surgery at UC San Diego Health.

I had a successful tumor resection, with no facial paralysis or hearing impairment. Once a college athlete, I have a love for exercise and for staying active. I was concerned about my ability to continue my regimen once the surgery was complete. I am now 14 weeks post-surgery and I have resumed my exercise routine for the past six weeks.

There will always be challenges, but the athlete in me will always push through the obstacles. I am so humbled by my acoustic neuroma journey. The journey continues; it may not always be easy, but I am a warrior."

–Amanda Thibodeaux
December 2017