Diagnosed with Cervical Myelopathy (Part Two)
I recommend you read part one here if you haven’t already.
Shortly after the initial diagnosis and recommendation of surgery, I asked the surgeon if I could hold off safely until October, so that I could enjoy the summer. He agreed that, while there are risks, that sounded reasonable. We left it at that.
A few days later, the arm pain got so severe I couldn’t function. Couldn’t sleep. It was terrible. I messaged the Penn team (thank goodness for the modern portals these hospitals all use nowadays and, more importantly, that the team assigned to me at Penn responds very quickly). They prescribed meds which I avoided until it got so bad I had no choice. I began taking a combination of the prescribed single 300mg Gabapentin before bed, along with my wife recommending I take Aleve. I had tried that along with lidocaine gel and patches, ibuprofen, etc. to no avail over the prior days. Eventually, what worked was my wife insisting I take Aleve on a set frequency, and not just when I felt pain coming on. A few days of that – 2 in the AM and 1 in the PM, got the pain down substantially, from a 6/10 (min/max) to a 1/5. I was able to sleep again!
I stopped the Gabapentin right away. If you Google that drug you’ll likely come away with even more concern over it than I had (and still do). Fortunately for me I only took it for maybe 5 days max, and a small dosage at that.
In the meantime, I went to Rothman Orthopedics for a second opinion. This surgeon reviewed my MRI and x-rays and insisted that I get a four level fusion from the front (anterior) along with supporting rods and screws (posterior). I was devastated. I told him what Penn recommended. He responded by saying “the Penn guys do things we would never do.” He said it condescendingly. I asked him about loss of mobility (“30%”); how urgently I should get the surgery (“Asap. Within the next couple of months max.”); etc. My wife and I had additional questions but apparently a 25 minute consult total, including the physicians assistant exam and MRI review, was too long for that guy. He clearly rushed us out of there and said he’d like to see me back in two weeks. We reluctantly left, even more devastated and confused than we had thought was possible.
The next morning I texted a friend of mine who happens to be an anesthesiologist. I explained the predicament and that I was in need of a third opinion to help me decide between the hybrid surgery and the four level fusion. What a choice! : ) He texted me the name of the guy he said had the best reputation at his hospital. I got an appointment to see him the next afternoon.
So I go see the third surgeon. Before the appointment I remember watching a promo video of him on the hospital’s website. He states that he avoids surgery whenever possible, promoting physical fitness etc. I momentarily dreamed of him telling me he agreed with the first surgeon, as I dreaded the likely lifelong repercussions of a four level (front and back) fusion. I then snapped out of it and told myself to brace for the worst.
That next day I’m in the exam room waiting. He walks in doesn’t say much other than a quick hello, sits down and reviews the MRI and x-rays. He then turns to me and asks what my story is. By that time, the radiculopathy pain was mostly gone (in hindsight, it was about 75% gone, and has since gone down to about 98% gone, only noticeable when I am sitting awkwardly). I tell him about the first two surgeon recommendations. He says to me that if he were to do surgery he would do a fusion of C6/C7 and, even though I’m asymptomatic on the left side, since he was in there already and C5/C6 is so herniated and compressing the spinal cord, he would replace that disc and then, “Call it a day…but you have to decide whether you really want surgery or not.” I was perplexed at that last sentence. I told him, “I don’t want ANY surgery, but these other two guys told me I had to get it asap or I risk paralysis!”
Long story not so long….he recommended against surgery. Said monitor it and come back in three months. He said, “There’s no way, if it were me, that I’d get a four level fusion at 50 years old! Do you want to live with a four level fusion for the next potentially 30 years?!?” As for the first surgical recommendation, he took great exception with “skip a level” surgeries. Said he never heard of that being done.
In a nutshell, his thesis is that I likely have had this compressed cord for decades, yet aside from some nerve pain which is mostly gone now without surgical intervention, he thinks it’s likely I would have died an old age and never known I had this condition. He told me if things get worse call him, otherwise come back in a few months and we can assess, then six months, and then in a year take another MRI and compare.
I left elated. I couldn’t believe it. That seemed like a totally logical approach!
It’s been two weeks and I’m not so sure now. While the arm pain is gone, my right arm is definitely left weaker. I’m concerned I’ve taken that first dreaded “step” in the wrong direction that is a progression of what is called cervical myelopathy, sometimes referred to as cervical spondolytic myelopathy. While some never degrade, others progress through a series of steps over time, first step resulting in what I have now, for some worse, then weeks, or months, years or decades later (no one knows) the next step might result in a loss of balance. Eventually paralysis.
The only way to stop progression is by decompressing the spinal cord through surgery.
So talk about a gamble. Do I get surgery? I’m convinced I will get it. Problem is, I don’t even have a recommended consensus on what type of surgery!
I sought out who the absolute best cervical spine specialists are in the country and two names popped up. One is at Cornell. This guy is so in demand that you don’t just make an appointment with him. You submit all of your images, fill out questionnaires, etc. and then he reviews and decides whether your case warrants his attention. I will hear back from him this week.
The other, a local guy, is a colleague of the four level fusion guy I mentioned before. But I heard he often disagrees with his colleagues, so worth a shot. Hard to get an appointment with him, but that’s probably for the best now I think. I see him in late June.
And, to add to the confusion, surgeon #1 called me on Friday afternoon to tell me, given my pain has gone away without intervention, he now recommends against immediate surgery. “Let’s monitor it! In the meantime, go back to exercising.”
I’m approximately seven weeks out from a week long vacation at the beach with family. Just enough time to drop the ~7lbs of fat and 1″ of extra waist I’ve accumulated during this stretch of inactivity. Frankly I’m amazed that’s it.
So, with two of three surgeons now recommending I get back to my life, I am scheduled for tonight’s yoga class. I’m, quite frankly, very nervous. More scared than nervous. I did two back-to-back ten minute Apple Fitness+ yoga classes yesterday to test my right arm. It held up, with some slight twinges in the forearm, and overall I am in bad physical shape right now – it felt like I was brand new to yoga. Even my breathing was heavy, labored. While the rest of my body is suffering from lack of exercise, that will be quickly remedied over the coming weeks. But will this “dead” right arm bounce back? I’m hoping it’s just weak from my not using it and favoring it for the past few months. If it fails me tonight, then reality will set in that this is a new normal, and I’d be itching to get surgery as soon as possible and forego the vacation. But I don’t even have a verified surgical approach. Ugh.