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Stories of NF: Sarah

By May 26, 2011December 5th, 2023Awareness

My name is Sarah, I am twenty-six years old and live in British Columbia, Canada with my husband Hans and our dog and two cats.

I was diagnosed with NF2 when I was thirteen years old. At this time I was having a lot of trouble walking and I was rushed to Children’s Hospital in Vancouver, BC where I was given an MRI. The doctors discovered my brain and spine were loaded with benign tumors, and this is how NF2 all began for me. I had emergency surgery to remove several tumors from my spine at this time. I was lucky that with time, patience, and physical therapy, I regained my ability to walk.

But my fight with NF2 was far from over…

Two years later when I was fifteen years old, my left vestibular schwannoma (hearing/balance nerve tumor) had grown large enough to leave me profoundly deaf in my left ear. I underwent stereotactic radiosurgery that year to attempt to stop further growth of the tumor.

In 2007 I underwent my second spinal surgery to remove multiple tumors which had grown large enough to compress my spine and be cause for concern.

In November, 2008, my right vestibular schwannoma had ballooned up and was compressing my brainstem. In the year prior, my hearing in that ear had gotten progressively worse. This surgery would leave me deaf, but there was some hope. I was sent to the House Ear Institute in Los Angeles for the surgery. The surgeons who operated on me there removed the tumor and also implanted a hearing implant similar to a cochlear implant called an auditory brainstem implant (ABI). The ABI gives me sound awareness and helps me to communicate with people when combined with lip reading. It does not mimic “normal hearing”, but it is still a huge help and has been a major blessing.

Since 2008, I have been participating in a NF2 natural history study at the National Institutes of Health (NIH) in Bethesda, Maryland. The purpose of this study is for the researchers to learn more about NF2 in hopes of better treatment options. I go to Maryland every six months for testing which includes MRIs, vision testing, blood work, and exams/consultations with research doctors.

At my latest NIH trip in April, 2011, I had eight tumors surgically removed from my right arm. I unfortunately also learned that a tumor at the base of my skull near the brainstem is once again growing. It is in a very risky location and has already been operated on once. This summer I will have to undergo my third major spinal surgery to remove this dangerous tumor.

NF2 will be with me forever. It is a lifetime of waiting and watching, of MRI scans and of deciding when surgery is worth the risk of losing another function. I have too many tumors to count throughout my spine, in my brain, and in various other parts of my body. NF2 and the treatments/surgeries that I have undergone have left me deaf, with chronic back pain, drop foot, poor balance, nerve pain, vision loss, inability to open one eye, facial paralysis and many, many scars.

Despite all this, I try to live life to the fullest, one day at a time, and never give up hope that we will one day have a cure!