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Stories of NF: Renee E.

By February 3, 2022December 4th, 2023Story of NF, SWN

In 2019, after many years of my chronic pain being misdiagnosed, MRIs revealed multiple tumors in the retroperitoneal area of my body. The nerve pain that I had been feeling for over half a decade was nearly all-consuming. The best way I would describe it to others was that it felt like someone was stabbing me in my leg hundreds of times per day. That is not an exaggeration – I actually tallied up the number of times I felt pain on one particular day and it came out to be 300+ times!

Prior to finding the tumors, I had tried various medications to help ease the pain over the years, but nothing helped. Some medications even caused negative mental side effects, like depression. Not having answers as to why I was experiencing this awful pain took a toll on my mental health as well. Because no pain medications helped, and I was desperate for relief, I quickly realized surgery was my only chance at a pain-free life when the tumors were discovered.

When I had chronic pain, I was also a student in college. Sometimes the pain was so horrible, I wouldn’t be able to sleep at night. Sometimes I would have to leave from class or studying because I would nearly burst into tears from the extreme pain I was feeling. Somehow, I managed to power through the pain and graduate from engineering school in 2018 from Temple University. 

My tumors were discovered during my first year of working as a systems engineer in the Denver, Colorado area. I had to go to countless doctor's appointments and MRIs, and ultimately take medical leave during that year. This was extremely taxing on my mind, body, and work. Luckily, I had very supportive managers, coworkers, family, and friends to get me through this scary time. 

In late 2019, I underwent a very invasive surgery at Johns Hopkins. My surgeon ended up removing an entire chunk of a nerve that was consumed by tumors, spanning roughly 9 centimeters. I now have no sensory feeling in my left thigh and I have a massive scar from the surgery. Thankfully, though, that means I am no longer plagued with the horrible pain caused by my schwannomas. My doctor presumed that I have mosaic schwannomatosis, though I have not undergone genetic testing yet. 

It is never great to learn you have a genetic disorder, and of course, I am scared that I will grow more tumors in the future. Despite that fear, for now, I am enjoying my pain-free life and am thankful that I had a successful surgery.

Now that I am through that phase, I am starting to think about how my diagnosis will affect my future. Schwannomatosis appears to be the least understood of all three types of NF, which is disheartening. I have a dream to have children and a family someday. As a young woman, you never expect to learn that you have a genetic condition you would never want to pass down to a child, so it is something that weighs heavy on me sometimes. However, as we raise awareness for NF and we discover more about this disease, I am hopeful that I can get the answers I need about my genetics prior to starting a family.

NF has made me stronger because I know that if I can get through years of excruciating, chronic pain while accomplishing all that I had accomplished during that time, I can get through anything.