My name is Terri Rausch. In 2007 (at the age of 40ish) I was diagnosed with NF2 via an MRI which detected my bilateral acoustic neuromas. I had had symptoms of NF2 years prior that were misdiagnosed. By 2007 I had already entirely lost my hearing on my right side. The hearing on my left side then (and now) is within normal range. My tumors measured approximately 1.5 cm each. It was recommended that I have surgery to remove the right side tumor (since my hearing could not be damaged through operation) and to place an Auditory Brainstem Implant (ABI) at the same time. Placing the ABI would allow me to practice with it and get used to reading lips and listening to the sounds so that when I am deaf on my left side (due to the disorder) I would be well practiced with the use of the ABI.
I had surgery in 2007 at the House Ear Institute in LA with Dr. Derald Brackmann. He removed the acoustic neuroma and de bulked the bone around the facial tumor (rather than remove it) in order to preserve my face.
In 2008, my husband Karl and I had our two children tested for the NF2 disorder via MRI scan. Avery’s MRI showed very tiny bilateral acoustic neuromas which cause him no hearing loss.
In 2009 Avery and I joined the NF2 Natural History study at the National Institute of Health. Two times a year for 5 years we were fortunate enough to have our testing done in Bethesda, MD. Our last trip to NIH was in April of 2015. During that time our tumors have not changed much in size nor have they caused us any additional losses in hearing. Avery’s balance has not been an issue, where I am starting to feel a little decline in balance.
Through the years we have spent our time educating our family and friends and doing what we can to raise awareness and funds. Karl and his friends have run half marathons while I started and promoted fundraising pages to accept donations to support their runs. We had a road rally one year where we invited our family to “pay to play.” All the money collected for the event went to support NF2. Of late, Karl and I have been hosting an annual Ice Cream Social Fundraiser for NF2 in our back yard and also an annual Euchre party fundraiser for NF2. Both very fun events that raise money and allow people to network and bond.
Karl and I are committed to using our time to find a cure. I hold board positions on NF2 BioSolutions Board and on NF Michigan’s board. Karl uses his creative and professional talents to create promotional and fundraising videos.