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In My Own Words: Schwannomatosis at 27

By January 13, 2020December 5th, 2023Story of NF, SWN

By Leslie Neighbours

My diagnosis was essentially the result of a misdiagnosis. It was also the result of me being persistent enough with getting answers, because the doctors certainly weren’t helping me figure it out. It was a years-long diagnosis if we’re being honest. After spending the early years of my 20s with atrophied calves and feeling the nerve pain increase year after year, I knew something was seriously wrong. I was confident I had a tumor.

At the time I was ignorant to it, about the same as the doctors I was consulting with, to be honest. I researched, researched and researched some more, until I was sure I knew what was going on with my mystery mortal frame. I finally managed to get an MRI of the pelvis when I was 27. And lo and behold, there they were. Not one, but countless tumors. I knew I wasn’t crazy, although I felt it from time to time. Some doctors will make you feel that way with this mutation.

I did the whole genetic testing deal, and, it was rendered essentially answerless. My mutation isn’t present within the bloodstream apparently. I was scheduled to have surgery regardless. So, spending excess time and money on a diagnostic work-up simply wasn’t a priority. That first surgery occurred on November 27, 2018. My first surgery ever, and no less than 15 tumors were resected off both the sciatic and femoral nerves. How’s that for entering the world of NF? I kinda came in with a bang. Talk about going big, or going home. My surgeon got what he could off the front side of my pelvis, but I was unfortunately belted with more.

After that surgery, I had a couple months of peace before the next hot spot ignited into outright flames. Which was, none other than the nether-regions. And boy, has this area been special. (Major sarcasm, for viewers who don’t know me personally.) So, naturally, I feel the usual hot lightning and blowtorch nerve pain that we NF warriors feel. But, add something like repetitive wasp stings, and a splintery wooden stake that feels as if it’s wedged within the walls of your every entire downstairs orifice – and you’ve got a girl who is beating down the door to eradicate this new circus of tumor invaders.

Now, given that this new area’s tumors are in pretty intricate places, the usual surgery isn’t typically desirable. Mostly because, if I’d gone the route of surgery, causing commotion on this nerve bundle, and I’d likely have been greeting my 30th birthday with a set of Depends. So, Emory proposed cryoablation. And yes, I was the experimental case – just without the benefits of being a case study. Regardless, I went forward with cryoablation and ended up needing to pay for my experimental procedure completely out of pocket because insurance companies don’t even have a code for it. So it’s not covered. Period. It was quite the surprise information, which I received about 6 days before I was scheduled to undergo the cryo. This happened the end of September 2019.

Typically, with patients who undergo this procedure, their turn-around time is 1-2 days. So, we expected my case to be about the same. A day or two of mild downtime, and the tumor death usually takes about 10 days. That didn’t happen for me. Instead, my nerves went into freak0out mode. By day 6, I was hospitalized for excruciating pain. I’ve tolerated a lot, but this was insanely intense pain. Way more than what’s even bearable.

I had almost 24 hours on a Dilaudid pain pump with round-the-clock observation. I campaigned to go home the next day. Did I need more care? Probably. Because I still needed a good two weeks to finish healing before I was functioning relatively normal without off the charts nerve pain. But this procedure had already cost me way more than I’d bargained for. So, I’d decided I would just finish healing at home, where overnight stays aren’t $10,000.

Things were quiet again for about a month. I tried to enjoy life as much as I could. I wanted to take advantage of the semi-pain free days as long as I had them. I hate to say that the same pains I had before cryo, have returned. I fear that the tumors that were targeted with sub-zero freezing never died. If that is the case, then I’ve got the resurrected invaders, as well as the new friends they decided to bring to the party. The same nether-regions area, but twice as much activity as 2019.

By mid November last year, things were really kicking up. By the end of December, my tiny work week, was becoming more and more difficult. And I feared that I would need to say farewell to a 10-year career in Esthetics. Which, I did.

I resigned entirely, January 4th of this year, just a few days ago. Leaving behind this career has been emotional for me. I invested a lot into my career, my boss and my work family over the years. Saying goodbye has been surreal, and truly one of the hardest decisions I’ve had to make. But, I knew the toll this field was taking on my body, and I knew I couldn’t continue doing it much longer.

I don’t know what this leap of faith will bring, nor do I know what 2020 will bring. But I’m at peace with this faith walk and at peace with this journey. Weathering the storms that come, is sometimes stepping out of the boat and walking towards Jesus – even if your motor function is nonexistent. Your off-balance attempt at seeking Heavenly reinforcement, plants an unmovable spiritual seed that grows insanely strong roots of faith, instead of deep-rooted weeds of fear.

It’s about allowing these life obstacles and challenges to mold us into better people, stronger soldiers, braver warriors, and more loyal friends. Let every war that our hands and eyes see, carve out our resiliency, and recalibrate our spirit. Let us plow forward in steadfast motivation, anxious to annihilate every fear holding us back from achieving all we are capable of. Let us see that the role that God wants each one of us to fill, is uniquely tailored to fit the warrior, not the masses. Let us have discernment, and accept the challenge to leap into our calling with confidence, and leave the timidity behind.

Click here to read more from Leslie on her blog Faith With a Limp.

Click here to read an exclusive excerpt from Leslie’s upcoming book.