neck faq

This week I’m deviating from the usual Sunday Seven pattern to provide a comprehensive FAQ about what’s going on with my neck. If you’re skittish about medical stuff, maybe skip this one.

What’s the diagnosis? Cervical myelopathy.

In English, please? It means the vertebrae in my neck are compressing downward on the nerves that radiate out sideways to my arms, and those nerves aren’t working fully as a result.

How does that happen? It’s because the discs between the vertebrae have degenerated significantly. They are no longer providing adequate vertical space for the nerves at the points where they exit the spinal column at the sides (those spaces are called foramina). Maybe this picture below will help:

The upper pic is from higher up in my neck where everything is working OK (for now at least). The green arrows show nice, clear paths for the nerves that radiate outward from the spinal cord in the middle. But in the lower pic, where the trouble is, you can see the paths out for those nerves are not so clear. The nerves are squashed at that point. Nerves don’t like to be squashed.

What are the symptoms?

• A loss of fine motor control in both of my hands, particularly the ring and pinky fingers. Left hand is worse.
• A loss of grip strength in both hands, left hand also worse.
• Some numbness in both hands and the outer part of my forearms. Minor.
• In my right arm only, a loss of strength in my upper arm (triceps/biceps).
• Put plainly: my hands don’t work right. I drop things. I can’t play the guitar. Using a pen or a fork or chopsticks is difficult. I can still type, but I make a lot more mistakes. The loss of strength in my right upper arm has made it harder to lift and carry heavy items.

Does it hurt? Mercifully, there is no pain.

Wait, back up, you can’t play guitar? Yeah. Sucks a lot. If I asked a hundred people who know me to say the first word that comes to mind about me, I bet 95 say some form of “guitar.” I can still strum some simple chords. Soloing is out of the question, though maybe I could get through “Cinnamon Girl.”¹ It’s a giant problem, identity crisis-level.

Can you do other activities? Normal household/life stuff is fine, as long as it doesn’t require a lot of dexterity. I can still work, for better or worse. I can run, and I have a couple races coming up before surgery to keep me sane. It’s not really safe to lift weights, given the lack of grip strength. Some body weight exercise is possible, though the loss of strength in my right arm makes that pretty frustrating, too. Golf is out of the question, since I’d probably lose the club swinging. Otherwise, it’s business as usual. A friend recently remarked that he didn’t notice a difference after spending a couple hours with me, and I suppose most people wouldn’t. I sure do, though.

When/how was it diagnosed? Ultimately by an MRI, around the first of the year. The images left no doubt (see above). There was also a fruitless ER visit, a few conversations with my terrific primary care doctor, and I saw a non-surgical neurologist who ruled out all the scary organic brain/nerve diseases. Whew.

When did it start? I started noticing tingling and numbness in my arms when I was trying to sleep last summer. I found that if I moved my head, it would get better or worse, which led me to believe the problem was in my neck. Some time around last Thanksgiving, the weakness in my hands started to become noticeable during daily activities. I also was working out one day around then, and realized I could barely do a triceps pull-down with my right arm.

Is it getting worse? Yes, slowly. My surgeon warned me this was likely.

Why did this happen? I asked very specifically if my marathon training contributed to this, and my surgeon’s response was an unequivocal “no.” All of us will experience spinal disc degeneraton with age, though probably not to this degree. It just seems to have happened more severely and at a younger age for me. Basically, there is no “why” other than the Second Law of Thermodynamics. Entropy comes for us all.

What are you doing about it? In about five weeks, I’ll be having an Anterior Cervical Disc Fusion (ACDF) surgery, where they will essentially fuse three of my cervical vertebrae (C5/C6/C7) into one.

How does that work? trigger warning creepy medical stuff ahead The surgeon will go in from the front (“anterior”), moving my esophagus and trachea off to the side. He’ll remove what’s left of the two degenerated discs and clean out any bone spurs he can get to. He’ll replace those discs with 3D-printed titanium inserts, and then bolt a titanium plate vertically across the front of the three bones to hold it all together. Those inserts will increase the vertical clearance between the vertebrae to allow the nerves to function again. It’ll take 2-3 hours, start to finish. I’ll be under full general anesthesia, of course. This won’t be a quick propofol nap.

Yikes. Did you consider less invasive options? There are none. The situation is way past the point where any less dramatic treatments can help. And there’s no chance it will heal itself or get better. Also, all the other surgical options are more dangerous than going in from the front. So, onward. And inward.

Sounds…bloody? Doc said the blood loss will be minimal, and a transfusion is not expected to be necessary.

But you’ll be taller, at least? Yeah, probably about 4mm. Maybe I’ll be able to dunk.

What are the risks? The biggest risks are the usual ones from general anesthesia and any invasive surgery: blood clots, bleeding, infection, etc. The full list of those is horrifying, but I think think very low probability. From the procedure itself, there are risks to the esophagus (difficulty swallowing) and trachea (voice damage). There are tiny risks of damage to the spinal cord or nerves. And there’s a chance it won’t work. My surgeon says he’s been doing these for years with nothing but excellent outcomes, and he expects mine will be, too. Most of his patients are about ten years older than me, for whatever that’s worth. Seems like that should give me a better chance.

Will there be a loss of mobility? In truth, I’ve already lost a lot of mobility, especially rotational. From what I understand, it won’t be noticeable.

Will you set off detectors at airports? Those usually are looking for ferrous metals, not titanium, but who knows what evil lurks in the heart of TSA.

Are “Wolverine” jokes appropriate? Always.

Who is doing this? And where? Dr. Timothy Wang and his team at Rush Chicago. They are all super impressive, much more focused on the anxious human involved than a typical surgical unit would be, I think.

When? Late April.

What is the post-surgery recovery like? At least one night stay in the hospital, and at least one week out of work, recovering at home. Soft foods for a while. Pain meds, which I hope to use minimally. I’ll be in a hard cervical collar for 6-8 weeks which will be the worst part of this. No driving, no running, and no lifting over 10 pounds, which probably precludes travel. Really, not much of anything beyond walking. It’s going to be a big pain in the ass for me and my family, and I’m trying to come to terms with that.

Is there rehab? Not specifically. I’ll be working to regain strength and dexterity through exercise and practice, but not in a prescribed PT or OT sense.

What’s the long-term risk? Whenever you fuse vertebrae, the stress on the discs just above and below the fused area necessarily increases. The current best estimate is that the risk of the problem spreading to either side of the fused region is about 2.5% per year post-surgery. I can live with a 25% chance of needing another surgery in ten years.

Are you sure about this? I got a second opinion from another neurosurgeon in another health system who fully agreed with Dr. Wang’s diagnosis and plan. Once I heard that, I booked the surgery that afternoon.

Is work cool with this? Yes, they’ve been great, just like they were last year when I needed time off to take care of dad.

How do you feel about all this? Resigned, hopeful, anxious. Doing nothing is not an option, and I wish there were a lesser ordeal available. The lack of a choice takes a lot of the drama out. Surprisingly, several friends have had this procedure, and they all report nearly immediate and total relief from their symptoms, literally as soon as they came out of anesthesia. So I’m holding on to that, and of course I’m grateful to have the support of my friends and family. Optimism isn’t a thing I do, but sometimes there’s no other way.

Anything we can do to help? Just keep a good thought for me, and for Sharon, who’s going to have to deal with me feeling like a caged animal during recovery. I don’t do idle any better than I do optimism.

Will you keep everyone posted during recovery? I won’t have a lot else to talk about for a while, so, yeah, for sure.