This is a story about neck surgery. I know, sounds dreadful and downbeat. But it’s not all sawbones and sutures. It’s full of personality and positivity. So stick around, meet the cast, and maybe if the message resonates, you’ll slow down some, take just a little better care of your body, and never again have to see the words anterior cervical stenosis with discectomy and fusion.

Deb Davis wheeled a 5K after healing from surgery.

Deb Davis wheeled a 5K after healing from surgery.

The story starts with Deborah Davis, who wrote a cautionary article in her webzine PushLiving.com last December called “Save Your Spine.” Davis, the NEW MOBILITY Person of the Year in 2014, lives in Florida, is 51, has two daughters, 26 and 24, and has been spinal cord injured since age 19; she’s a C6-7 quad but functions more or less as a para, with no balance — which means she falls. A lot. In 2014 she did a full-weight face plant on to a commode. She had a concussion; it took her weeks to stop the vertigo and to see straight again. At the time this happened, Davis already knew her spine had issues, as 18 months earlier an MRI revealed cervical nerve invasion, just not yet to the point of no return.

Last fall, Davis attended a conference in Fort Lauderdale, pushing herself across town in a wheelchair with a damaged seat and poor support for her body. A couple days later she experienced debilitating neck strain and her head felt heavy. “I thought it would work itself out, as usual. But it didn’t,” she says. “I went to see an orthopedic doctor, who sent me to a neurosurgeon. I normally hate to go to the doctor. You know me, I’m great with the vanity issues — my skin, my hair, my nails, my clothes. This time I realized it’s a lot more than being slim and pretty.”

An “after” X-ray shows the titanium plate.

An “after” X-ray shows the titanium plate.

Davis went in for a new MRI, where they saw clearly that her cervical spine was still degenerating. “There was a big blob of disc material herniating into the cord,” says Davis. Unless she got surgery to repair it, she faced a very high risk of becoming a higher level quad. When the doctor tells you your spine is a mess and that the blob is only going to get worse, and that if you fall again it could dramatically raise your level of disability, it gets your attention. “My doctor and I didn’t want to risk having me lose my independence. Not doing surgery was riskier than doing it.”

I did not anticipate that Davis’s marital status would be part of the story, not until she revealed to me that she got married again (number four) in December, just days before the surgery. She said she kind of “freaked out” about all the what-ifs before the operation —  worrying about her daughters, her business, her affairs. She said it would have taken months to get everything in legal order. So, here’s Frank, a dating partner for a year and a half, soon to be the designated guardian.  “We were not sure what we were going to do,” she says. “But we weren’t going to leave each other, so we said, ‘let’s do this.’”

deb-wayne-newton

You can barely see the scar on Davis’ neck (she is pictured with singer Wayne Newton and his wife, Kathleen McCrone, at The Bouniconti Fund event “Destination Fashion.”)

Davis’s diagnosis: cervical stenosis. What that means, simply, is that the canal formed by the spinal bones to encase the delicate spinal cord has narrowed, typically because the discs that cushion the vertebrae are bulging, or because bone growth is beginning to pinch into the cord or into nerve roots. Her surgery opened the neck from the front, then moved the larynx and esophagus out of the way to get at the spinal column. Doctors exposed the backbones in the neck, removed the bloboid pieces of the damaged discs, propped the vertebrae open with fake disc material, and cut away any bone that might have been pressing on nerve roots. They tidied up by fusing the vertebrae with bone material and a titanium plate.

This type of surgery is fairly commonplace, especially among older folks. According to the medical literature, more than 85 percent of those over 60 have cervical degradation, or spondylosis, even though it might not be symptomatic. Make that 100 percent of those over 70. Why? Wear and tear on the backbones. Add wheelchair living to that, with years and years of arms being legs, and it’s a recipe for overuse and degeneration.

Things Weren’t Right
Now meet Erin Gildner, who runs the United Spinal Association chapter in Arkansas. She is 36, married, has two boys, 10 and 12. Gildner was spinal cord injured, T11-12 in 2002, in a motor vehicle accident. At the end of 2014, she fell hard, felt numbness and tingling, had no loss of strength but had pain in her neck and shoulders. “It was a stressful time. I gained weight and wasn’t physically active.”

Erin Gildner is happy to be active with her sons again.

Erin Gildner is happy to be active with her sons again.

Last June, Gildner fell again in a hotel room during the United Spinal Roll on Capitol Hill. It did not seem serious at first. But when she came back to Arkansas, things weren’t right. “I got more numbness and tingling, began to lose a lot of strength, especially on my left side, which is my dominant side. I couldn’t transfer into a vehicle or take my chair apart. I had a hard time gripping things. I got an MRI that showed cervical stenosis — the nerve canal in my neck was closing in on nerve roots.”

Gildner’s doctors opted to start with more conservative options — intensive physical therapy, massage, and traction, with 20 pounds pulling on her skull to relieve her spine. This worked a little. But by October, her pain increased and even her bladder function got worse. “I started to feel achy all the time. My face was bloated. I was just not myself.”

Gildner didn’t know it yet, but she would soon join Davis in a sisterhood of spondylosis. A while back Gildner had started a private Facebook page for women with spinal cord injuries. Davis, one of about 125 members, posted last November that surgery had been recommended for her own stenosis, and does anybody have any experience with this? A couple of weeks later, Gildner responded that, OMG, I’m having the exact same procedure, for my own disc issues and bone spurs at C5-6 and at 6-7.

Gildner’s surgery was pretty much exactly like Davis’s. They came in from the front of the neck, took two discs out and put in what they call cages to keep the vertebrae aligned, used a cadaver bone paste to fuse the entire segments, then added the metal plate.

Gildner, in Arkansas, had her cervical spine redone six days ahead of Davis’ surgery, in Florida. They compared notes and sent each other get-better presents.

Did It Work?
It wasn’t like flipping the on switch to off, says Davis, but she woke up with no numbness in her hands. Neck pain was gone. Her head didn’t feel so leaden. She was able to go home, with some part-time home health aide, new spouse and family care during the early days. She’s had some issues with swallowing. But she’s happy she did it.

Gildner brought a photo collage blanket to her surgery to keep her family close.

Gildner brought a photo collage blanket to her surgery to keep her family close.

Gildner is even happier. Her situation was “instantly better” after surgery. “It was actually kind of miraculous,” she says. “I thought there was going to be a long recovery, lots of PT, I thought I would be hurting. But it was not anything like what I thought.” Gildner came home and in all, only lost about four weeks of time away from work. She still has issues with her voice (the surgery roughs up the vocal cords) but she has lost weight and is stronger and busier than ever. Gildner is driving again; she got a chair lift from Voc Rehab to make transfers easy into her car, with a second lift to load the chair. She’s been back to normal for “quite some time.”

Nondisabled people who get this surgery are advised to not lift more than a few pounds until the neck bones heal. What’s a person to do who has to load the arms and shoulders with full body weight to make transfers? Davis was able to use her arms to transfer after a few weeks. Gildner was able to shower independently and do transfers within a week; her doctor told her to not worry, the titanium was strong, that she’d be OK, “as long as I’m not going to be boxing.”

To learn more about stenosis surgery, I called Scott Falci, an SCI neurosurgeon at Craig Hospital in Denver. Yes, he confirmed, it’s a common overuse issue. “Cervical stenosis in people with spinal cord injuries does not have to be as severe as in the nondisabled population to have significant effects. The nerves are already not functioning as well to start with. Add an additional insult such as stenosis and the process of degeneration can speed up.” Falci sees people with paraplegia and quadriplegia who have cervical stenosis, with symptoms of pain, or functional loss, depending on which nerves are being squeezed. Pressure and stress on the nerves can happen, he says, because discs can expand, or because degeneration in the neck can thicken ligaments or create bone spurs. “The body’s response to wear and tear is to try to stabilize the spine, and that can narrow the spinal canal.”

Quadriplegics, who often already have spinal column fusions, are prone to stress on the bones, and thus stenosis, in the areas above and below the fusion, says Falci. “This can create a difficult decision. We need the area to be decompressed but we don’t want the person, who depends on neck mobility, to lose flexion and extension. People need to be able to bend their neck, so sometimes we agree not to fuse, even though in the future that area could become unstable and require it.”
Advice: If pain gets worse, if function starts to change, get an evaluation. “It doesn’t mean you have to do anything, but at least you know your options,” says Falci.  Some people, at the first sign of functional loss, “jump at surgery. They don’t want to lose anything else. Others may watch as they become more paralyzed, so to speak, but learn over the years to accommodate it and modify their lifestyle. If they’re good with that, I’m good with that.”

Rick Mason has chosen to “ride it out” instead of getting surgery for lumbar spinal stenosis.

Rick Mason has chosen to “ride it out” instead of getting surgery for lumbar spinal stenosis.

Keep the Neck Strong
Rick Mason has spinal stenosis and he’s good with it. He’s 58, a C6-7 quad, manager of a bicycle program in Sacramento, California, a 40-year veteran of the SCI club. “It causes lower back pain, which gets worse with sitting and movement throughout the day,” he says. Mason is one of those super active guys — a former competitive swimmer who’s tried it all — handcycling, rugby, tennis. “I’ve used and abused my body. My arms have been my legs, too, for 40 years, and it’s finally catching up to me.” A few years back he went to the doctor to check on his scoliosis. “They put two and two together and figured stenosis was the likely cause of the pain.”

The docs recommended surgery in the lumbar spine area; they said it was at a place where the spine bends, which might trigger inflammation and narrowing of the canal that hosts the cord. He said no. “It’s hard to say if the pain has progressed over the years, hard to say if it’s worse than it was. I have sensation of hot and cold, and touch, and didn’t want to risk losing that. I’m able to manage the pain. I am able to get relief with rest and relaxation. I’m going to try riding it out.”

Billy Altom, who has cervical stenosis, plans to ride it out, too. He is executive director of the Association of Programs for Rural Independent Living in Little Rock, Arkansas. He’s 35 years into the club, the result of a motor vehicle accident at C5-6, and L1-5. “I’m like that cartoon, you know, ‘Lost, male dog, has one eye, mangled left ear, paralyzed hind leg, crooked tail. Answers to the name, Lucky,’” he quips. With SCI, it’s always something. “I’ve broken every bone in my right leg, it kills me all the time. My hands are atrophied, arms and elbows hurt, they’re beat to death.”

Billy Altom declined neck surgery for his cervical stenosis, but many people with paralysis opt for surgery because “they don’t want to lose anything else,” says Dr. Scott Falci.

Billy Altom declined neck surgery for his cervical stenosis, but many people with paralysis opt for surgery because “they don’t want to lose anything else,” says Dr. Scott Falci.

Recently got Altom got 10 weeks out of circulation for third degree burns on his butt cheeks, from a heated car seat. He’s had chronic pain “forever,” and his medical chart says he has multilevel spondolytic disc issues, narrowing at C4-5, abnormal signal at C7. “They recommended surgery. No. I saw more potential for harm than good.”

Can people with SCI head off stenosis? Hard to say, says Falci: “I don’t know how to tell people to stop using their upper body. Stop using the arms? Use an electric chair? Don’t live life to the fullest? I don’t have a good answer. I do recommend that people stay as fit as possible, keep the neck strong.”

Gildner and Davis recommend the obvious, that you don’t fall. Don’t smoke. Keep your gear in good shape, take vitamins A and D. Drink a lot of water. Gildner went off carbs and feels better. Davis loves massage. They both told me they take better care of themselves and are more mindful of technique and ergonomics.

“Please heed our warning,” says Davis. “Learn from our shared experience, monitor, and do not create undue strain and disc degeneration or herniation on your cervical or lumbar spine. Take the best care of the body you have been given post-injury, and preserve your quality of life for as long as possible.”

Resources
• Questions and Answers About Spinal Stenosis, www.niams.nih.gov/health_info/spinal_stenosis/#spine_b
• A Patient’s Guide to Cervical Spinal Stenosis, www.houstonmethodist.org/orthopedics/where-does-it-hurt/neck/cervical-spinal-stenosis/
• Cervical Stenosis, Myelopthy and Radiculopathy,  www.knowyourback.org/pages/spinalconditions/degenerativeconditions/cstenosis_myelopathy_radiculopathy.aspx