Living with Cervical Stenosis: My Story…

By Chris Centeno, MD / Last reviewed on

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living with neck stenosisI still remember the first day I knew there was something seriously wrong with my neck. I had just finished working out with a personal trainer when I wrenched something and went to lay down on the couch and couldn’t move my neck. In fact, the only way I could get up from the couch was to hold my teeth with one hand to support the weight of my head while using the other to push up. Thankfully, this was gone by the morning, but it began an odyssey that ended with a diagnosis of cervical stenosis made via MRI and a recognition that I would have to adapt around this problem. Thankfully I knew what to do to manage the problem, and my life today living with neck stenosis, outside of a few adaptions, doesn’t look all that different from the life of most 50-somethings without stenosis. However, having just gotten off the phone with a patient who is now where I was at my low point, I understand that most patients with this problem are trapped between a rock and hard place and have no idea how to climb out of that deep and dark hole. Hence, this unusually long blog.

What Is Cervical Stenosis?

Cervical stenosis means that the hole in the middle of the spinal cord (central canal) is too tight and doesn’t have enough room. Since this is the place that all of the wiring must pass through from your brain to your muscles or from your fingers and toes to your brain, pressure on the spinal cord here can cause all sorts of havoc. What causes the central canal in the neck to get too small? Neck-joint (facet) arthritis, disc bulges, loose ligaments, and being born with a small canal.

My Story

That day on the couch, I knew something was really wrong. I didn’t just have a stiff neck; I couldn’t move my head and neck!  I wasn’t paralyzed anywhere else except my neck muscles. I should have gotten an MRI then as this was really messed up, but I didn’t, perhaps afraid of what I would find and because I was just too busy. My neck finally gave out a few years later, but not after any specific event—it just came out of the blue.

Before this major event, I had long noticed times where I had pain in my shoulder blade. I would ignore these and they would go away, but then about 3–4 years ago, that pain began to amp up. In fact, I remember pressure on my shoulder blade that felt like an invisible hand was shoving my head forward. I also remember that a few weeks before that, my thumb would go numb when playing football with my son.

That shoulder blade pain continued to rise until it became a 9/10. Given that I didn’t have much neck pain, I told the physicians at our clinic to inject my shoulder, which did nothing. Hence, I quickly became a connoisseur of carefully arranged sleeping pillows. In fact, I could only sleep at a 45-degree angle, which meant broken rest at best. I then changed up the treatment plan and had my partner inject my neck with an epidural (around the nerves) using my own platelet growth factors (platelet lysate). For the first time in about a week, I went home without much shoulder blade pain! We had found the source, which was in my neck.

I also still remember staring at my MRI, disbelieving that it looked as awful as some of my patients’ MRIs! There were multiple areas where the spinal cord had barely enough room and a few where the exiting nerves had no room. We had a friend of ours diagnosed at the same time with a similar condition who went for immediate surgery. I didn’t go that route; instead, I worked with our doctors to perform several injections. I also began to make changes to what I did and worked on getting my neck “opened up” by performing physical therapy at home. How all of that worked is below.

Why Not Get a Fusion Rather than Living with Neck Stenosis?

We live in a society where we are erroneously taught that every problem we have can be “fixed’ with a surgery. As a physician who gets to see the strings in the surgical puppet show, I know that this isn’t remotely true. In fact, the most common surgery to “fix” cervical stenosis, a neck fusion, is often worse than the disease in my experience. Basically, you solve one problem and introduce two others. In addition, recent research has echoed that observation, showing that while stenosis patients do better for a time after surgery, by 3–4 years out, they’re right back where they started, but now with all new issues.

One of the things patients need to get over is the “hard sell” that surgeons will use to try and convince the patient to undergo surgery. Usually, scare tactics like, “If you take a bad fall or get in a car accident, you’ll be paralyzed.” Is this true? While it’s theoretically possible and is seen from time to time in large university medical centers, it’s so rare that it’s hard to find any statistics on (believe me I’ve tried). Hence, near as I can tell, the likelihood of this happening is about the same as dying in a fatal car crash. It can happen, but it’s a very rare event.

What I’ve Learned…

As I spoke to a patient the other day about whether we could help his stenosis, I realized that one of his problems is that nobody had ever told him that living with neck stenosis was possible, and that you could not just live, but live well. I thought back to what my life would have been like had I not learned how to make minor adaptions and if I didn’t have the advanced injection care of my colleagues, placing platelet growth factor shots in all the right places. I would have had a surgical fusion by now, and we would be chasing the new pains caused by the surgery, or I would be like my patient on the phone, disabled and unable to do much.

Before I can go into how to live and function with cervical stenosis, you have to understand a few rules of the road. First, you need to understand how to recognize symptoms of what I call “ramp up.” This means that the nerves in your neck are getting irritated and it’s time to back off. What does this look like for a patient with stenosis? Here’s what happens to me:

  • Tightness or soreness in the muscles of my forearm or arm. Most people and many physicians don’t understand that irritated neck nerves can cause tightness in the upper back, shoulder, biceps, triceps, forearm, or hand. At times this will feel like pressure, and other times this will feel like the muscle is sore for no reason. Sometimes it will show up as a small cramp.
  • Numbness or tingling can happen, but for me it’s not as prevalent, other than at night. When that occurs during the day, it’s usually in my thumb, and it means I’ve really pissed off my neck. At night, either one of my whole hands can go numb. This happens if I have my head in the wrong position or if my shoulder is too far forward, placing pressure on the brachial plexus nerves.
  • Neck tightness and decreased range of motion are common. This tends to happen when I overdo it, usually with lifting weights. This happens because the nerves that supply the small stabilizer muscles close to the spine get irritated because I have brought too much of my neck into the lift (rather than just my torso and arms). Hence, the small stabilizers get knocked offline and the big muscles like my upper traps, levator scap, and scalenes take over to stabilize my neck, causing tightness. This is because these muscles aren’t designed to be neck stabilizers.
  • Crepitus is a medical term that means popping and cracking in a joint with motion. This can happen to my neck when the stabilizer muscles are offline (see above).
  • Low-back pain? While I have a separate low-back issue, when I sleep with my neck in the wrong position, I can wake up with back pain. Why? The nerves in my spinal cord that go to that area can get irritated.
  • Fasciculations, or muscle jumping, is common. This just means that the nerve supply to that muscle is offline.
  • Weak or heavy legs or arms is not uncommon. This comes from irritated nerves that supply these muscles. If it happens in my shoulders, I take this as a serious sign that I need to get the nerves calmed down.

My Rules for Living with Cervical Stenosis

  • You may have heard the phrase “location, location, location” for buying real estate. The analogous phrase for cervical stenosis is “head position, head position, head position.” Meaning that when your head and neck get bent in funny ways, this puts pressure on the nerves and spinal cord. As an example, I limit or, at least, control the amount of time I spend looking down at my phone or anything else. Or another example, lying in bed with my head propped up to read a book or an iPad will begin to set things off. The workarounds? Hold your phone higher to keep your head and neck straighter and lie on your side with your head correctly positioned to read a book.
  • Sleeping can be interesting and a time when your head and neck can get in weird positions and begin a cycle of being “ramped up.” When my neck was really bad, I would sleep with a loose cervical collar at night. In fact, I became a connoisseur of cervical collars, looking for just the right one with the right fit or making small modifications to them by cutting out this piece of plastic or that. I also experimented with how loose or tight they should be. When I was deep in the hole, this really helped me climb out. While I no longer use these, I always make sure one is handy if my neck gets really aggravated.
  • Pillows are a big deal. I need to use a specific one to keep my head in straight alignment with my body. If the pillow is too big (e.g., in a hotel), I can wake up with symptoms that can take the better part of the day to go away. So making sure that you have a pillow that can compress is key. I also only sleep on my side and avoid sleeping on my stomach with my head turned. Sleeping on your back is fine.
  • Weightlifting or just lifting and carrying heavy things. As you read above, this is what got me in trouble the first time my problem exploded. However, I’ve learned that all of this is fine as long as I can control my core. This means that I am intensely focused on lifting less weight for more reps, and for every arm workout, there’s either a core component (like benching less weight on a Swiss ball) or many exercises exclusively focused on my core (like slow and careful body rotations with a pulley). So the rule is that I can only lift heavier once my core gets stronger. How do I know I’m pushing it too hard? If my neck kicks in substantially during the exercise. I now know that this is not a good sign and I’ll pay for it. None of this means that I’m not able to stay in shape; it just means that I need to listen to what my body is telling me.
  • Overhead work is a killer. When you have cervical stenosis, your neck stabilizers can easily go offline. When this happens, you become “trap dependent,” meaning your trapezius muscles are responsible for stabilizing your neck. When you do overhead work or have one arm up and resting on something, that takes the trap out of commission as a stabilizer, so you’re relying on neck stabilizers that don’t work so well. This can be a recipe for tweaking your neck.
  • Bad seats are a hazard. The absolute worst is either an airline economy seat or some of the newer movie seats that have a forward head support and bend your neck slightly forward. Both can be helped by placing a rolled up jacket behind the curve in your low back, to create some natural curvature of the neck and to push your body forward of the headpiece. The same holds true for other chairs. In addition, turning your head frequently left and right can be an issue, so never position yourself at dinner in a seat where you need to have your head turned to talk to someone!
  • Stretching is key. You can’t let yourself develop an old man or woman forward head! Or at least it’s your day job to fight against gravity. Why? A forward head puts more pressure on the spinal cord! Hence, I’m constantly using my “Old Man Stretch.” Click here to learn more!
  • Stability is key. To this end, injections into the loose spine ligaments that come with stenosis to help tighten them and reduce sloppy motion is a key part of reducing symptoms and increasing function. Why? Sloppy spine motion means more nerves being banged into and more symptoms and less function.
  • Putting the fire out when it happens is also key. Despite how carefully you move or position your head, there will be times when things get ramped up and out of control. For me, when that happens, I take an occasional Tylenol, which will help reset things, as it can be a potent nerve drug. If Tylenol won’t touch your symptoms, then you need to start where I started, having high-dose platelet growth factors injected around the neck nerves (epidural or into the facet joint using X-ray guidance). I still do this once or twice a year when I feel things getting ramped up and I can’t bring them back down by myself. My last injection was about a year ago. I stay away from steroid shots in my neck, as while these can help reduce swelling, they also inhibit healing, damage cartilage, often have diminishing effects, and have systemic side effects. 

While I have other things I could teach, it’s critical to understand that living with neck stenosis is possible. My life is very active. On the weekends I hike about 2,000 vertical feet and eight miles. I lift weights twice a week. I do some sort of leg workout or cardio on other days. Meaning, nobody looking in at my life (outside of my wife) would know that I have this problem.

Are there types of stenosis you can’t live with and that require surgery? Yes, but at this time, we can manage about 70–80% of all patients that get this diagnosis and who are told that they need surgery. Hence, you have a good shot at avoiding the surgery bullet.

The upshot? A diagnosis of cervical stenosis in most cases doesn’t mean a fusion is automatically needed. Living with neck stenosis is possible and not hard to do, but you need to learn the tricks and how to manage the problem. I’m several years into this and 98% of the patients in my shoes would have long since had a cervical fusion. My goal with this long blog this morning is to make sure that people with this problem know that surgery is not your only option and that you can live well with this disease!

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29 thoughts on “Living with Cervical Stenosis: My Story…

  1. Jane Mclellan

    Would like to know if this treatment can be done in scotland

    1. Regenexx Team Post author

      Jane,
      We don’t ave a Regenexx provider in the UK yet, but we do have a Regenexx provider in Brussels. Please see: http://oreme.eu/

  2. Anna

    Great post, thank you! I’m slightly flared the past few days and reading your tips and ways to navigate the condition is a welcome reminder of what to avoid, and what to also add

    I am living proof that the platelet Lyset treatment works! I’d be lost without finding Regenixx; you guys are amazing!

    1. Regenexx Team Post author

      Thank you Anna!

  3. chris

    Buy cheap glasses, and tape over the top 1/3-1/2 of the lens. It will force you to keep your chin up, and give better overall head position. Ten minutes a day should start getting you in the habit of not dropping your head down.

    I’ve had great success with a MyPillow. The one that is always being advertised on t.v. It feels like it is filled with marshmallows. That allows you to make really small adjustments to the shape everywhere in the pillow, and still give just the right level of support(without lumpiness).

  4. Pat Carpenter

    What exactly is Regenexx? Just been diagnosed with widespread cervical stenosis. My general practitioner wants to refer me to a pain clinic

    1. Regenexx Team Post author

      Pat,

      Regenexx® Procedures are the world’s most advanced stem cell and blood platelet procedures for treating orthopedic injuries, arthritis and other degenerative conditions. Our patented procedures use precise injections of your own stem cells or blood platelets to help your body’s ability to heal damaged muscles, tendons, ligaments, cartilage, spinal disc & bone. So while we treat pain, we treat the cause of the pain with regenerative procedures rather than procedures to mask the pain. Please see: https://regenexx.com/the-regenexx-procedures/back-surgery-alternative/

  5. Rose

    Is this available in South Australia
    My husband has severe cervical stenosis from C3 to c7 with muscle wasting in left arm and weakness in fingers of both hands
    He wears a cervical collar all day
    Would it help him
    He is afraid of fusion and due to damage already done outcome is not gaurenteed

    1. Regenexx Team Post author

      Rose,

      Avoiding fusion is important, as it is irreversible. We treat cervical stenosis regularly, but unfortunately not in Australia. If he would like to see if he would be a Candidate to see what his options are, please submit the Candidate form, here: https://regenexx.com/the-regenexx-procedures/back-surgery-alternative/

  6. Kevin Lopes

    Hello,
    Amazing blog and thank you for sharing! I too have Cervical foraminal stenosis in my and in my Lumbar region as well. Do you have any locations in Ontario, Canada?
    Also, I also want to return to lifting weights, but I am so scared! Any more advice?
    Thanks,
    Kevin

    1. Regenexx Team Post author

      Kevin,
      Unfortunately, we don’t have any locations in Canada, yet. The very detailed advice is all in the Blog. Please read thoroughly!

  7. Debi

    I have ruptured discs at C5-C7 with bone spurs, spinal cord compression, compressed left nerve root, DDD, cervical stenosis..boy what a mouthful! Woke up on day after training for a 100 mile bike tour with acute debilitating pain from neck down left arm..pain had me screaming in pain and in the ER..prednisone, flexiril, meloxicom, morphine, nothing worked, 4 months of absolute agony and couldn’t lift left arm with pain at a 10. Had ACDF surgery scheduled and a week before surgery pain started to subside and able to lift left arm with pain at a 3-4..but still having tingling and some pain so postponed surgery. Neurosurgeon wasn’t pleased but I figure I should at least see if improvements continue.

    Just wondering with all of these issues, would Regenexx be an option?

    1. Chris Centeno Post author

      I would need an exam and review of your imaging to comment, but suffice it to say that my neck MRI is similar and I have not had surgery.

  8. KAY HUGHES

    I wish I would have read this article years ago. It sounds like you are describing me! Not knowing that I had any option, I had fussion on C3-4-C5-6. And like you said, after 4-5 years, I am being told that C2-C3 is now needing surgery. My surgery was a nightmare and I don’t want to go through that again if there is any other way.
    The Chiropractor says he can’t be of much help. I am trying therapeutic massage and also a physical therapist.
    Would I still have the possibility of getting help from Regenexx?
    Does insurance cover it?
    I live in Arizona. Is there places available near me?

    1. Regenexx Team Post author

      Kay,
      We’d need to examine you to see what’s going on in your particular case. But, we can generally help with Adjacent Segment Disease. Please see: https://regenexx.com/blog/pain-after-neck-fusion-2/ and https://regenexx.com/blog/neck-epidural-failed/ While some things would be covered if you are in network, the procedures themselves are not. Please let us know if you would like us to get you set up in the nearest location for those procedures.

  9. James

    Is regenexx the same as prp platelet rich plasma?

    1. Regenexx Team Post author

      James,
      Regenexx® Procedures are the world’s most advanced stem cell and blood platelet procedures for treating orthopedic injuries, arthritis and other degenerative conditions. Our patented procedures use precise injections of your own stem cells or blood platelets to help your body’s ability to heal damaged muscles, tendons, ligaments, cartilage, spinal disc & bone. Specialized versions of Platelet Rich Plasma are an important part of the Regenexx Flexible Lab Platform, which allows us to customize all of our treatment. Please see: https://regenexx.com/blog/orthopedic-stem-cell-treatment/ and https://regenexx.com/blog/regenexx-flexible-lab-platform/

  10. T J Bapela

    Are you available in SA?

    1. Regenexx Team Post author

      TJ,

      Unfortunately, not yet. Here are the locations of the Regenexx Providers: https://regenexx.com/find-a-physician/ Please let us know, here, if you’d like assistance in finding the best location for you.

  11. Carol

    I have cervical stenosis & myelopathy. I have been delaying surgery because symptoms have gotten better. I have been told that I can become paralizide. Would the regenrxx treatment work for me, I am 74 years young

    1. Regenexx Team

      Hi Carol,
      We treat cervical stenosis and it’s impact on spinal nerves regularly. Please see: https://regenexx.com/blog/what-is-foraminal-stenosis/ and https://regenexx.com/resources/videos/neck-facet-joint-stem-cells-and-prp/ and https://regenexx.com/resources/videos/regenexx-spine-procedure–intraarticular-facet-injections/ https://regenexx.com/blog/ok-wrong-neck-fusion-pain-gone-horribly-wrong/ We’d need more information to see if you would be a Candidate. Please submit the Candidate form here: http://www.regenexx.com

  12. Fayza

    Hello I am 43 years old .and just found out I have cervical spinal stenosis.c-4 c-5 c-6 c-7 very tight Experincing numbness tingling face arms lips hands fingers feet have been for few months .Doctors say only options is surgery and symptoms will get worse.any advice

    1. Regenexx Team

      Hi Fayza,
      We treat cervical stenosis regularly. To see if you would be a Candidate, please submit the Candidate form here: http://www.regenexx.com and see: https://regenexx.com/conditions-treated/spine/​spinal-stenosis/

  13. Pamela Bollman

    50 yr old female, cervical and foraminal stenosis, “severe” at some levels, 2 of 3 neurosurgeons seen recommended ACDF but I declined for reasons you noted in your blog, years of physiotherapy and chiropractic and nerve block injections, hydrodissection of brachial plexus (thoracic outlet syndrome), and massage. Living with chronic pain (neck, shoulders, arms) for 10 years, many misdiagnoses until MRI in 2009. Any neck stretching exercises result in greatly increased pain. Anterior shoulder and upper arm pain, sometimes forearms also, is very bad in bed lying on back with pillow such as you described. Should I continue trying to stretch my neck? Is it ever contraindicated?

    1. Regenexx Team

      Hi Pamela,
      It definitely can be contraindicated in certain situations. An accurate diagnosis is needed to figure out a plan of action. What levels do you have MRI’s of?

  14. Claire Hughes

    So pleased to of found this article. I am 40 years old & have been living with cervical stenosis for 4 years now. I am an active person. Love gym training & surfing. I had a ramp up as you call it about 5 weeks ago & ended up in emergency. It has settled down now & I had a brilliant dr. Reading that you still weight train (light) has made my day. I feel that I need to continue with light weight to keep the muscles strong. And I am more in tune now when I have over done it. I to enjoy bush walking & am so happy to read that you still lead an active life.

  15. Marie Sullivan

    First and foremost, thank you! Reading this is encouraging me and reminding me that I am on the right path, just keep working the problem. I now understand why my major movers, ie. traps, levator scapulae, etc, get so cranky, those stabilizers are ‘ticked off’. I am still working on find my limits and adapting accordingly. I was diagnosed one year ago with congenital cervical stenosis at 48. The catalyst was three years of chronic (now I know tension) migraines. The pinnacle was when the tension had moved down my back giving me maybe two hours of sleep at night. The neurologist just threw pills at me and I finally reached the end of my coping skills. Eight weeks of PT and eight weeks of Airrosti (can not speak highly enough of this therapy!) and I could say I felt ‘reset’. It’s been a year of a learning curve. Taught myself to swim now that I couldn’t run (due to heart medicine), now my push-up regime was off. I have reached a new limit or now that I have read this article maybe just an adjustment point. I reached a half mile in my swim two times now to follow by so tension causing a migraine. I was really getting down about this, but your blog has encouraged me. Back off. Let things calm down. Try again. Thank you for sharing!!!

  16. Varun

    Great post, thank you for information.
    I have 3 cervical bulge but no spinal cord compression or radiculopathy but constant neck pain and wanted to know if I would be a candidate for this therpahy. Appreciate your help.

    1. Chris Centeno, MD Post author

      I would need to see images, but it’s likely you’re a candidate.

Chris Centeno, MD

Regenexx Founder

Chris Centeno, MD is a specialist in regenerative medicine and the new field of Interventional Orthopedics. Centeno pioneered orthopedic stem cell procedures in 2005 and is responsible for a large amount of the published research on stem cell use for orthopedic applications.
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