Some call it the suicide disease.
No one really knows for sure what causes trigeminal neuralgia (TN) and as of now there is no cure. Like many disorders of the human nervous system it remains in many ways a baffling mystery even to the best doctors and specialists, and one that’s difficult to diagnose and even more difficult to treat. On the right and left side of your face is what’s called the trigeminal nerve because it breaks off into three different parts eventually landing right above the eye, the upper cheek and along the jaw line. Something, for lack of a better word, inflames this nerve and the result is a searing, burning, electric shock-like pain that can come at any time and last for a few seconds, a few minutes, a few days…
It’s called the suicide disease because there’s no escaping from the pain. For some, various levels of relief can be found through pain medications. Enough relief that you’re willing to live with all the ugly side-effects that come from ingesting such things. But nothing will ever completely mask the pain — a pain you never get used to and that slowly drains away your life-force.
My wife doesn’t have TN, she has something rarer still: Atypical TN (ATN). For sufferers of this nightmare the pain doesn’t come and go – the pain never-ever goes away. Four years ago and from out of nowhere it struck and ever since – 24 hours a day, 7 days a week – there’s been no relief and no good days; only bad days and awful days – days where she can tolerate it and terrible days when the flare ups come which frequently results in a trip to the emergency room.
And then there’s the despair. No one can comprehend what that word really means to sufferers of this awful disease. Imagine the moment when one realizes that the only promise of their future is that they will forever be in inescapable pain. I can’t imagine it. But what I do know is what it’s like to helplessly stand by as the person you love most in the world suffers unimaginably. And after four years of waging war against this thing, I also know a little about what the American health care system is like.
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THE AMERICAN HEALTHCARE SYSTEM IS THE DEVIL
After the pain first arrived, for months my wife’s primary doctor, let’s call him Dr. Clueless, sent her to various specialists until she was finally diagnosed with ATN. From there she was shuffled off to a pain management specialist who we’ll name Dr. Stands-In-Door because he would haul my wife into his office for monthly appointments – pulling her out of work – so he could stand in the door of his examining room and write her a prescription for pain medication. Any inquiry she made into alternative therapies was met with the sound of a prescription ripped from its pad and the assurance that this was as good as it could get.
My wife hates taking pain meds and the one time she actually managed to get Dr. Stands-In-Door to spend a few moments with her, he gave in and referred her to a clinic that specialized in nerve blocks. I still remember the place. With all the cheap paneling and Formica, the waiting room looked like a 1970’s era collection agency. After the procedure, when I went to see her in the back, I knew we’d made a mistake. It still looked like a collection agency.
Somehow this nerve block made things worse. Permanently. And my wife’s life was then spent summoning all the willpower she had to concentrate on her job. At home she would sit and rhythmically wince from the pain for hours on end until exhaustion finally put her to sleep. But she was still only sleeping a couple hours a night and due to the pain in her jaw, barely eating.
Physically and psychologically she was disappearing.
And then there was the stress. Her number one fear was losing her job. She works for a very large corporation and they supply our health insurance. No job, no insurance, and without insurance the price of her medications alone would bankrupt us within a few months.
And then there would be one more specialist. I don’t remember his specialty, but Dr. Useless sent us to Dr. Deserves-To-Burn-In-Hell. During her first visit, Dr. Deserves-To-Burn-In-Hell accused my wife of faking her pain to get the pain medication. She told me this as we drove home. I did a u-turn and it took a 911 call to get me out of his office.
The worst months were yet to come. I don’t know how it happened but somehow we got stuck in some kind of bureaucratic loop with the insurance company. Something innocent caused a rule to kick in that made it impossible for us to get prescriptions refilled until the very day the last one ran out. While she was at work, I’d have to drive to Dr. Stands-In-Door’s office, pick up the prescription and then hope the pharmacy had the medication in stock (and frequently they didn’t no matter how many times I called ahead and asked them to hold it for us), because missing even a single dose meant another trip to the emergency room.
Life was madness. But you don’t realize how crazy everything is while you’re living it. Chaos becomes the ordinary. It’s only when you look back through a context of normalcy that you wonder how you lived like that. And we did, for a year and a half.
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THE HEALTHCARE SYSTEM WASN’T THE PROBLEM, I WAS
Those hellish 18 months represent what a lot of people go through in our system, especially those calling for ObamaCare. You find yourself in a cruel and vicious cycle of incompetence and indifference; you get stuck in bureaucratic quagmires that grind you down into something you don’t recognize anymore – someone who’s screaming on the phone at innocent bystanders employed by companies who seem to have a mission statement meant to bedevil you.
This was my fault.
Certainly none of it was my wife’s fault. Her mind was so blurred by pain that she could no longer be an advocate for herself. And I’m not saying that these doctors and specialists weren’t awful. But the mistake I made was in not taking charge. Stupidly and lazily I trusted that everyone would do their jobs, do what they were supposed to do, and because of that – because I was too unassuming and unwilling to challenge and question and push – things were much more difficult than they had to be.
That was going to change.
Like a scene from a lazily-plotted movie, we started with the Internet to research what exactly it was we were dealing with. Unbelievably, we found that there were other medical procedures available. Many of these therapies were new and cutting edge, but not a single one of these doctors ever mentioned any one of them to us. To say we were stunned is an understatement. How could these awful men watch my wife suffer so and never bother to Google? Or did they know and for whatever lazy, careless, or sadistic reason not say anything?
It was my turn to visit Dr. Stands-In-Door.
“You’re telling me there’s nothing more that can be done for my wife?”“Well, we can keep trying to adjust her meds.”
“But no therapy or surgery?”
“No.”
“What about the Gamma Knife?”
Within fifteen minutes, courtesy of Dr. Stands-In-Door, we had a written referral and not just any kind of referral. My wife was going to see one of the top specialists – not in the city, not in the state, and not in the country. Dr. Spectacular is one of the best in the world. And upon hearing my wife’s story, one of the first things Dr. Spectacular did was to send a letter to Dr. Stands-In-Door telling him just what useless human being he is.
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THE WONDERFUL WORLD OF THE AMERICAN HEALTHCARE SYSTEM
Gamma Knife is a fairly new treatment where a burst of radiation is directed at the trigeminal nerve. You don’t want to kill the nerve. The side effect of such a drastic measure results in the numbing of the entire side of your face, and believe it or not, this can actually bring on a syndrome that causes even worse pain. The Gamma Knife settles the nerve down. It’s not a cure. The pain remains. But for more than 50% of those treated there is some relief.
My wife had the procedure, a not so-terribly intrusive day surgery — and thank God she was in that 50%.
After two miserable years, yes, she was still in pain, but now there was less pain. It was manageable. She still had to ingest all the same medications, suffer the flare ups and subsequent trips to the emergency room. But the torment was over – well, it was lessened. Brushing her teeth was still torture and she frequently teared up when applying her make-up … but it was manageable.
We were told that for roughly half of Gamma Knife patients the relief is temporary. Unfortunately, my wife was also part of that 50%.
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THE RELAPSE
As the one-year anniversary of the Gamma Knife surgery loomed, though we couldn’t bring ourselves to say it out loud, my wife’s pain was returning to where it was prior to the surgery. A second Gamma Knife procedure is a tricky proposition. You risk deadening the nerve and all the unthinkable consequences that come with it. And so our old nemesis Despair returned along with the intensity and frequency of the flare ups.
But there was also fear – fear of reaching that point we had read so much nightmarish testimony about on various TN online communities; that point where your pain reaches a level that forces you to choose between suffering with it, or taking toxic levels of medication.
It was my wife who refused to give in. The dignity she had never once let slip throughout any of this, wasn’t about to let us down now.
“I’m going to make an appointment with Dr. Spectacular and ask if there are any new treatments.”“It’s only been a year. I doubt anything new has been invented.”
“You don’t have to come.”
I went, and I’m glad I did.
The device is called a Facial Nerve Stimulator, and it’s the central part of an electrical therapy that’s been around for decades but only recently has been used for sufferers of TN. Like the Gamma Knife, the success rate varies but Dr. Spectacular felt as though my wife was a perfect candidate and referred us to Dr. Miracle Worker, who also agreed.
The first surgery was a test, a temporary implantation of two sets of thin wires under the skin of the cheek that give off a small electric charge that’s meant to confuse the nervous system’s pain signals. Three days after the surgery, my wife enjoyed the first completely pain-free hours she’s had in years.
Last month she had the device installed permanently.
She’s been pain-free ever since.
She still has to take the same medications and turn the device off at night, but, yeah … it’s a miracle.
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WHY OBAMACARE TERRIFIES US
My wife has the promise of her life back because of the dynamic innovation of our current health care system, and also, those individuals and institutions the Left is so determined to demonize.
Many of the medications she takes weren’t available ten years ago — so yes, we love Big Pharma. We also love the medical company that created this incredible stimulation device that so far **knock wood** has changed everything for the better. Most of all, however, we are eternally grateful for and beholden to an incredible team of doctors, surgeons, nurses, interns, and their respective staffs – not only for their unfailing kindness, patience and empathy – but for their incredible and innovative talents.
We’re just as grateful for our insurance company. This is no Cadillac plan. As I said, my wife works in the customer service department of a very large company. But never once was any procedure or medication denied. Yes, this was personally expensive for us. There are co-pays and deductibles to the tune of thousands of dollars that will take some time to pay off. But why shouldn’t we share some of this financial burden? Where did this absurdly immoral sense of entitlement come from that says we’re not personally responsible for the price of our own health?
I’m not arguing our current system is perfect and couldn’t use some major improvements. There’s something immoral and flat-out wrong with a system that shackles you to a job and its health insurance coverage for as long as you have a “pre-existing condition.” And there are things the federal government has done right. For instance, the Family Medical Leave Act, which worked like a tonic to relieve all the stress that came with worrying about losing a job (and insurance coverage) due to the many absences caused by a legitimate medical condition. And though I always fear chasing the perfect at the expense of the good, there are a number of market-based solutions to the legitimate problem of the uninsured that deserved a chance before a full-blown government takeover.
Yes, as I noted above, there were moments so frustrating that I would’ve gladly reached out for anything marked hope or change. But the bottom line is that what saved my wife can best be described with a single word: Innovation – and nothing drives away creativity and risk-taking and those industriously intelligent individuals good at both, faster than the punishing regulations, restrictions, red tape and overbearing punitive measures that always come with government interference.
Had ObamaCare become the law of the land ten years ago would the perfect storm of scientists, technicians, thinkers, and doctors have been around to create the medications and equipment necessary to give my wife her life back? No one can say. But when you’re talking about the well-being of my wife, or anyone’s loved one, “no one can say” is not an acceptable answer.
True, at first we trusted the system and it failed us. Miserably. But because the system is still mostly market-based this gave us choices and alternatives that made The Miracle possible. The easy joke here would be to compare what’s likely to happen under ObamaCare to the DMV. I prefer the nightmare of our public school system: some rays of light, but as a whole, completely substandard when it need not be that way.
The ObamaCare debate is all about focusing on the uninsured and costs. What’s been lost is what matters more than any of that. Let’s just go ahead and pretend that thousands of new bureaucrats, government regulations and price-control measures actually will manage to insure everyone and bring consumer costs down. But I ask you, what good is any of that when you’re in pain or worse?
There’s no doubt that the punishing effects of ObamaCare will drive some of the best and brightest out of the medical field and into more profitable professions less encumbered by heavy-handed government oversight and cost controls. And many will make that decision not based on how much money they can make. The attraction will be the freedom to create and innovate to their heart’s content. And wanting to profit from their talents and risk-taking does not make anyone evil or greedy.
What is wrong, though, is ObamaCare and its advocates stifling the kind of creativity that affects our quality of life, and this I fear will be the unintended consequence. This will also affect everyone. In the world of ObamaCare, the wealthy will most certainly continue to enjoy their elite, top-tier health coverage. But everyone will be in the same boat when it comes to paying the cost of whatever medical innovations are lost in the bureaucratic maze of what is now the law of the land.
Thanks to ObamaCare, the Leftists and misguided social justice-types determined to fulfill an unholy vision of an ordered society because the messiness of liberty makes them uncomfortable, might very well win the day. And I doubt that as of right now they even care that the price of their societal engineering will be the loss of countless perfect storms of market-based science and technology that would’ve eased this or cured that in the future. And maybe those advocating this takeover of our health care system by the same government incapable of stopping an oil leak deserve that fate.
But my wife doesn’t, and neither does yours.
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