Edith Garrett was 19 years old when she was diagnosed with NF2. We asked her to tell us about her diagnosis, the many and different types of interventions and treatments she’s had, and the catharsis of a good cry, even after all these years.
Tell us about your diagnosis. Would you share what your symptoms were, why you sought out medical care?
I was home in Atlanta for the summer in between my freshman and sophomore years in college. I was running a good amount. I thought I had developed a shin splint and went to see an orthopedic surgeon who had known me growing up. He took an x-ray of my shin, poked my shin in a few places, and noticed the small bump protruding in the middle of my shin. He seemed a bit perplexed. He asked me if I had ever had Bell’s Palsy because my face had started showing signs of paralysis and I did not have a shin splint. He had a hunch something was going on, and with that I was scheduled to see a neurologist before I left for school in late August. The MRI revealed bilateral acoustic neuromas. I drove back to school that summer hearing the words, “You have neurofibromatosis type 2” in my head.
What different treatments and interventions have you tried and how have they impacted your health and your hearing?
In 2006-2007, after years of watchful waiting, my hearing started to rapidly decline in the one ear in which I still had hearing. For many reasons, I was not a candidate for surgery at that time. I started an oral chemotherapy, Tarceva, during my senior year in college, but it was not effective. My hearing continued to decline and Tarceva’s side effects were getting worse. I stopped chemotherapy in the fall of 2007 and began a pre-clinical trial of Avastin. In a lot of ways, it was my last hope, but I regained hearing in the left ear. It was an incredible feeling to regain the ability to hear. It is hard to describe those emotions in words, but it is something I will never forget.
Over time, my facial paralysis got to the point where I couldn’t move my smile on the left side. In 2009, I had my first facial surgery, a Gracilis Muscle Transfer, in which muscle was taken from my leg and attached to my chewing muscles. This procedure allowed me to regain my full smile. I was very happy with the results. Facial function is so important for communication. It’s incredibly tough when you can’t convey emotions on your face. Sadly, I woke up a year later and the other side had become paralyzed but I had to delay treatment for another six years to prioritize brain surgery.
The next series of interventions took place while I was working. I am a high school math teacher and, for major interventions like surgery or radiation, I worked hard to schedule surgeries during the summer months. My medical teams always worked with me and made that possible. In addition, I have been lucky to have great support from my employer. Here are the interventions I had during this time:
● Emergency Appendectomy (2011): This procedure had nothing to do with NF. However, I had recently had an Avastin infusion and ended up in the ER two days later for emergency surgery. Avastin delays wound healing and adds complications for surgery. There was a long recovery filled with hospital stays for IV antibiotics.
● Subtotal Resection of an Intracranial Meningioma (2012). This was my first and most difficult brain surgery. It lasted 15 hours and was more difficult for surgeons than anticipated. I was in and out of the hospital during recovery, with a clot in my arm and severe nausea. Following this, I had myopathy in my legs — a rare side effect from steroids — and had to relearn how to walk. It took a good 6-7 months to get back to full time in the classroom. It took a full year to get back to myself, physically and emotionally.
● Resilience training (Spring 2013): I was having a hard time after surgery. My Neuro-Oncologist recommended I give this a try. I did and I am forever grateful. I learned how to think or rethink about my own inner dialogue and began doing meditations. It was just what I needed to fully recover and emotionally heal.
● Removal of Right Acoustic Neuroma and Placement of “sleeper” ABI (2013): Fairly standard operation and placement of ABI. I do like that I have an ABI should I need it in the future. I have yearly check-ups with an audiologist related to the ABI. Recovery was tough.
● (2014) I finally got a Summer OFF!- BEST feeling ever. For the first time after moving up to Boston in 2010, I did not have a surgery.
● Second free gracilis transfer to the right side and placement of a VP shunt (2015): Honestly, after two brain surgeries, I realized this gracilis transfer is a nothing. Yes, my leg had to heal and the swelling had to recede from my cheek. It took about three months before my mouth started to move again on the right side. Then it just kept getting better! I had a full smile again!!! So many people take a smile for granted. I never will. I know what it is like to have it taken away (twice). The Shunt was placed about ten days later. Again, it was nothing like a big brain surgery in terms of recovery. It was necessary, though, because I had started getting bad pressure headaches.
● Thirty-two days of Proton Radiation Therapy (2017): The meningioma that had been operated on in 2013 was growing and reached a size in which another intervention was necessary. The surgeons did not want to operate again, leaving me with the option of radiation. The odd thing about radiation is that going in the proton center everyday was easy. I saw the same team each time. They greeted me with smiles and we chatted about life. It was almost as if I could forget why I was actually there and I was visiting with friends. After radiation was complete, life got considerably harder. I was exhausted and worn out to the point that thinking and working was difficult. But, again, I was able to work with my employer and get time during the day to nap at work, so I could continue teaching full time.
You were 19 years old when you were diagnosed with NF2, I imagine you had big dreams for how your life would look, things you wanted to do, etc. Did any of this change?
I was majoring in math with the intent of teaching when I was diagnosed. I did not have any intention of teaching to Deaf / Hard of Hearing students at that time. However, my diagnosis made me aware of that population, and students who are Deaf have a right to have good teachers too. That thinking led me to graduate school to get a master’s in Deaf Education.
For me, I grew up with a timeline in my head. There was a certain age when I thought I should be married, when I should have kids, etc. I had to learn that timelines are just something in my head and not necessarily the way it works out. I learned to be okay with that, and realized that I did not fail if I did not satisfy an arbitrary timeline.
Can you tell us about your role as a teacher at a school for the Deaf?
I am a teacher. I teach all day in a second language (American Sign Language). It is tough, but I want my students to come into my classroom and have access to everything that is shared. I have high expectations for my students. I want them to be thoughtful and well-rounded individuals. I try to be a role model, but I am also their cheerleader. I go to athletic events and the annual play every year. They have taught me quite a bit about toughness and resilience in the past few years. Oh, and adolescent hormones have also taught me a thing or two 🙂
What advice do you have for someone (or a parent about their child) who just learned they are (or soon will) lose their hearing?
I don’t have the right words for this situation. I am not sure who does. I have learned that we all have to manage and cope with this loss in our own way. It is incredibly tough! I will say it’s okay to grieve and cry. I did and sometimes still do.
Is there anything else you’d like to add?
I owe a big thank you (even though it doesn’t exactly feel sufficient) to my family. I might be the only one with the actual NF2 diagnosis, but in a lot of ways my whole family got diagnosed, too. My parents and older sisters have been with me every step of the way. They have made accommodations when needed for me. They have been with me through all the major interventions. They are the reason I have been able to push through and come out on the other side okay.
Edith sits on the advisory committee for the NF2 Accelerator, a significant research initiative dedicated to finding effective treatments for neurofibromatosis type 2. To learn more about the NF2 Accelerator, please visit ctf.org/endnf2.
