It has been a month since the confirmation that my sciatica is actually caused by a nerve sheath tumor. It’ll be another three weeks until I have an MRI to see if there are any schwannomas on my vestibulocochlear nerves. Until I find out if I’ve been bequeathed my father’s Neurofibromatosis.
The waiting really is the hardest part. And as a patient I have very little to do in this time between appointment besides live in a body that may or may not (though most likely may who are we kidding) be harboring some very unwelcome guests. I make lists of symptoms – pain, numbness, the feeling of always being off-balance – and have a tough time believing all of this is just coincidental.
All this time, I’ve wanted to trust my doctors when they told me that I should be more worried about my grandmother’s ovaries full of cancer than my father’s spine full of tumors. I internalized that message, which impacted the kind of patient I was. In my medical chart, my primary complaint is dysmenorrhea – menstrual periods I’ve been complaining about since my twenties because the pain spreads across my lower back and down my entire right leg. That didn’t seem particularly normal but none of my doctors knew what to make of it. All they knew was that my ovaries looked healthy, so I had “nothing” to worry about.
Now that we know there is a tumor causing all this sciatic ruckus, the strangely radiating menstrual pain makes perfect sense. And now that I know my sciatic tumor may very well be just the presenting symptom of my family’s chronic nerve-tumor condition, I wonder if my other seemingly mysterious symptoms will likewise be devastatingly understood.
The last time I was truly pain-free was in middle school. In high school, I had a big umbrella I used as cane whenever my right hip and lower back pain would flare. I hated walking around with that thing, even though it did help me manage (sort of). I remember using it to hobble to the bus stop and as happens often in Windward Oʻahu, the sky opened spectacularly and I had to choose between walking and protecting myself from a torrential downpour. I was so ashamed of myself in those moments, sopping wet and wondering why I was too much of a whiny-faced baby to even walk half a mile.
Now I look back on that and wonder: have I been symptomatic for thirty fucking years without my symptoms being properly investigated? Have I been sitting on my body the time bomb, chasing down a hundred different possible reasons for my chronic pain when the simplest explanation really could be that I had a fifty percent chance of inheriting the tumor condition that took my father, his brother, their father and his before that as far back as anyone in my family can remember, and fifty percent did not go in my favor?
So I find myself remarkably (but completely understandably) hoping that next month’s MRI does discover benign vestibular schwannomas so we can at long last just get down to the business of managing whatever in the hell is wrong with me. Because my sciatic tumor is not my only symptom. It is not my only source of pain or my only concern. I have a list of complaints that’s had me feeling since adolescence like a whining, lazy brat who’d be just fine if I just learned to suck it up like everybody else. And I am in so much pain, so tired of sucking it up and fighting against my own body just to do things I actually want to do (nevermind the things I don’t want to do, like take out the garbage and scrub the toilets), that I somehow think finding a bunch of nerve tumors would be better than not finding them.
Of course I want to be past this aggravatingly passive waiting game phase and deep in the trenches of symptom management or whatever happens next. I am a fantastic patient when I have a To-Do list to check off. But as we get closer to the next steps in my diagnostic circus, I am uncomfortable with how scared I am that they won’t find any tumors in my head. Because NF2 is no joke. It is painful, debilitating, and I zero percent want to have it. Yet here I am, afraid of the shame that will envelop me again if I have the enormous good fortune to sit down in that neurosurgeon’s office and have him tell me that my headaches and tinnitus and numbness and stumbling are not a result of tumors inside my skull. Afraid of no answers and more questions, and more of this lifetime spent feeling off-kilter and hurting but never, ever knowing why.
image of a curious kitten looking in a pot By Julián Cantarelli via Wikimedia Commons
4 comments
Ugh. What a predicament. And what a terrible way to receive the validation that is 30 years overdue. I am so sorry.
So if you do have NF2, what’s the course of action? Is it possible it’s just in your spine and not your brain? And how much of a difference to your quality of life would that scenario make? I mean, my hunch tells me that spine alone could limit you to ongoing debilitating pain, but tumours in your brain might—but not necessarily—eventually cause paralysis?
My wish for you is that the neurologist sits you down and tells you you don’t have NF2, but that your symptoms are caused by this other thing which has an easy cure.
<3 <3 <3 Thanks, Lauren. My sister's genetic test came back negative for NF2, and right now we are waiting for tests to determine if we have Schwannomatosis instead. This is another NF condition that wasn't identified when my dad was diagnosed and has a lot of similarities to NF2 so people with schwannomatosis were often misdiagnosed with NF2. We're thinking this is what happened with my dad. And there are no cures for any type of NF. Just all the neurosurgeries.
Anyway, regardless I have a genetic nerve tumor condition and nobody knows how it will play out. BUT!!!! I have a great neurosurgery clinic near my house and have so many more options for treatment than my dad (or his dad and ancestors going back till whenever) did. This is a terrible and terribly painful condition, but it is not hopeless. I feel not exactly zen with the whole thing, but I do feel like I'm in a good place.
I understand the fear of not getting a diagnosis. We don’t want the grim diagnosis, but the shrugs and hand waving that happens when you stump the doctors is worse. I really do hope you get symptom relief, and if that takes a scary diagnosis, then I understand hoping for that.
I know it’s taken me like three months to respond (sorry!) even though I talk to you like every week. But I want you to know that I come back to this comment often and I appreciate it so much. Thank you for being here, love. It means the world.