“You may try to stand up someday soon and you may fall. If this happens, you will need spinal cord surgery. And believe me, you don’t want spinal cord surgery. It’s far more risky than brain surgery. If it gets to that, you may never walk again.”
These were the words spoken to me in a serious and hushed tone by the neurosurgeon I had been sent to consult with by a local neurologist. The somber surgeon wasn’t done. “I want you back in 6 weeks, 3 months, 6 months, etc. to do more MRI’s. We need to follow this thing.” I was stunned. My then-husband and I walked out of the colorless office, and my well-meaning spouse exclaimed, “Well, that wasn’t so bad was it?”
“Are you crazy?” That wasn’t good news! I’m screwed!”
Back up a month or so. It was an ordinary day and I was doing my routine fanatical workout of Stairmasters...a cruel and sadistic exercise machine. I was under a lot of stress. Four children under the age of seven plus a daily commute to a university an hour’s drive away where I was pursuing a Master’s degree in marriage and family therapy was more than filling my plate. The frenetic pace of my days taking care of children, home and homework left me pent up and tense.
That Stairmasters machine, if I’m going to be really honest, was my punching bag. I was ruthless to that machine…jumping on it and setting it at the highest level and going full force for an hour. I swear that machine was my saving grace as I stood there with music blaring in my ears and sweat pouring down my body.
One morning, I hopped off the machine having used and abused it for over an hour. I felt exhilarated, but wait, what was that? Tingling in my feet. “Oh, I’ve over done it,” I thought and I was quite sure the repetitive motion was the culprit for the tingling.
But the tingling was relentless in its’ own way and wouldn’t go away. The sensation that felt like an on-going motor was ever present and I began to worry. The more I worried, the more the tingling spread, like poisonous tentacles reaching up my calves and past my thighs and into my hips. I was a regular vibrator.
I tried to ignore the tingling but it was an attention whore and wouldn’t go away. Now, one thing you should know about me back then, back in those early days when I was raising four small children, is that there were moments, hours and days where I was prone to vague feelings of restlessness and anxiety. I was happy with my life but there were dark shadowy thoughts that started to become pronouncements that something, perhaps a rare and random disease, would lay claim to my settled and predictable life.
In other words, I was neurotic as hell.
The annoying tingling in my toes didn’t help my active imagination and I began to worry with full-time earnest. WHAT IF it was MS, some slow progressive deterioration of the muscles disease, or god forbid, CANCER. Some kind of TINGLING CANCER.
I would learn the hard way that going down the dark routes of the “What If’s” are not friendly or supportive questions to ask oneself.
I vacillated and thought I should stick with my gut and go with the obvious: overuse of Stairmaster’s. Stop with the Stairmaster’s and see a chiropractor. I did that and asked the very stupid question to the chiropractor, “You don’t think my tingling could be due to MS do you?”
Oh, I had forgotten the golden rule of medicine. CYA! A cloud passed over that chiropractor’s face and he suggested that I go to a neurologist “just to make sure it wasn’t MS.” Damn! I didn’t like this road I was suddenly on, didn’t like it one bit. But there it was. He thought I should go to a neurologist.
Upon entering the neurologist’s office, my heart went into overdrive. My father had died of a malignant brain tumor only months before, and the sterile and antiseptic smell and gray walls only brought back sad memories and a fatal diagnosis for my father. Clearly, it was my turn.
The neurologist asked me to walk a straight line. I promptly tumbled into the nearest wall. “Hmmmmmmmmmm…” said the gray faced doctor. “Oh, geez, I’m so clumsy when I get nervous. I’m just all atwitter!” My laughter met empty ears and I was told to take a seat pronto.
Memories of Sister Mary Superior, the one with the threatening ruler in her hand, came flooding back and I plopped with a thud on the nearest seat.
When I told him about my theory of the overuse of Stairmasters, he flicked his hand like he was swatting a mosquito. "No, that's not it."
He continued, "We need to do an MRI to rule out MS and ANYTHING ELSE.” Oh, I was screwed for sure.
3 MRI’s were ordered in quick succession and I found myself spending hours in these torture chambers where I was put into some kind of warp time zone where nothing existed but that machine and me.
Yet deep in that sterile vacuum of time I kept thinking to myself, “What am I doing here? I overdid the damn Stairmasters. It has to be the overuse of the Stairmasters.”
Oh, but that spoil the party machine found something in my spine. And the neurologist seemed overjoyed. “Aha! We found a defect in your upper spine. It’s a genetic defect you were born with. It’s called a syrinx and you have one and you need to go see a neurosurgeon ASAP!”
Oh the mind is a powerful thing and hearing about that pesky little syrinx that apparently had been a part of me since birth set me into an emotional tailspin.
The last thing the neurosurgeon said to me before I left was, “See you in six weeks, but if you find that you fall down and you can’t get up, call immediately! With that, he guffawed at his own play on words and I thought, “Great, a neurosurgeon who recites commercials…this must be my lucky day.”
The days that followed were filled with terror and hypersensitivity to every part of my body. Obsessive-compulsive worries of being paralyzed consumed my days. I knew I had gone too far when in the middle of a family dinner, I burst into tears and exclaimed to my husband and small vulnerable children, “I’M GOING TO DIE OF A SPINAL CORD TUMOR!” At the strong encouragement of my husband, this led me to the office of yet another doctor, this time a sane one, a psychotherapist, who gently told me my biggest problem was that I had allowed my life to being overtaken by ruminating thoughts.
And that’s when the real journey began. That point in time when you have to go inside, to your inner self, the one that knows the truth. To the one that could guide me through the mazes of modern science and inner knowing. That tender but firm therapist helped me to find my way back home, full circle really, and come back to the place where I could trust myself and not some cold-hearted machine or doctors on autopilot.
I went to a neuromuscular therapist for those overused leg and feet muscles, stayed away from Stairmasters and the tingling eventually went away.
As for the neurosurgeon and the appointment six weeks later, I never went back.
That was over twenty years ago and I’ve spent each spring, summer and fall riding my bike up steep hills and mountain passes…depending on these legs of mine and a spine that has a little hiccup in it.
And as terrifying as the whole experience was for me (and unfortunately my children!), it was a pivotal point in my life…that intersection of learning to trust my intuition, my gut and myself.
I’m still standing…after all this time.