Professional Patient

Tips for Fitting, Cleaning, Wearing Your Miami J Collar

Absolutely excellent, illustrated information on wearing your Miami J cervical collar, from the Ohio State University Medical Center patient resources: Wearing A Cervical Collar (PDF). If you lost your patient guide booklet (which may or may not have come with your brace), this article is a terrific substitute. 

This PDF includes especially valuable information for caretakers... so if someone is helping you deal with your brace, be sure to share this info. with them as well. 

More Helpful Tips on Coping with a Cervical (Neck) Collar

George Flanagin's ACDF portal has excellent tricks and techniques for coping with life in a neck collar. I especially can relate to his explanation that once your collar is on, your vision shrinks to what is directly ahead of you. It IS a little nauseating. I used to get seasick trying to shop at the grocery store or somewhere like Target. I tried walking down the center of a row and looking side to side... a recipe for dizziness and sour stomach. I finally learned to stand against one side of an aisle, with my back to the shelves, and look across at the items on the other side of the aisle. I would side-step my way down the row, then switch so my back was against the shelves on the other side of the aisle, rinse, and repeat. I'm getting tired just thinking about it now!

Protect Your Neck and Back by "Log-rolling" out of Bed

After my neck surgery, getting out of bed required a fancy schmancy technique: log-rolling. In log-rolling, you essentially roll onto your side at the edge of the bed and then push yourself up to a sitting position. Then you can easily step out of bed. This technique ensures that your neck stays straight and strong - no twisting, and no using your neck to pull the rest of your body up and out of bed.

Getting back into bed can be done, log-rolling in reverse - sit on the side of the bed with your feet and legs hanging off, then swing your feet up onto the bed while dropping your shoulder down onto the bed. Then you can gently roll onto your back.

The About.com Neck and Back pain area includes a step by step photo guide to the log-rolling technique. It's much easier to understand in pictures.

You don't need to be a neck patient to benefit from the log-rolling technique. Anyone who has back pain may enjoy log-rolling as an easier way to get into or out of bed every day.

Is Anterior Cervical Discectomy with Fusion (ACDF) Safe and Effective?

I received a comment from Carol recently that's worth addressing as its own post:
How successful are these surgeries (ACDFs) in relieving pain and maintaining function? 

The answer lies in research studies, which your surgeons should be familiar with and able to explain to you. As far as I can tell, the effectiveness of ACDF varies depending on the exact nature of your problem - is it stenosis? Kyphosis? Radiculopathy (nerve compression)? Myelopathy (cord compression)? Do you have ruptured discs? Osteophytes? Is the problem the result of a sudden injury, progressive wear and tear, or something like inflammatory arthritis? These key words help tell your physician whether an ACDF is a good idea. In general, it seems that ACDF is always a good idea when something is compressing the spinal cord... remove the something, and pain levels improve. The picture gets more complicated when there is a general diagnosis of disc degeneration. 

So, the basic answer is to ask your doctor to explain to you the exact nature of your problem and how ACDF will resolve it. Ask about pain improvements, too. I've heard (but can't find statistics to verify) that ACDF often reduces pain, but does not eliminate it altogether. 

Also ask about whether hardware will be used, and what kind. Sometimes, small (typically one-level) ACDFs can be done without surgical hardware being inserted. 

And don't forget to ask about postoperative treatments to enhance pain relief and/or encourage a strong spinal fusion. What kind of pain medications may you require, for how long? When can you start physical therapy, and how much may be necessary? Will the doctor provide you with a Cervical-Stim or something like it to encourage your spine to fuse? 

My Two Cents 

ACDFs are often considered "major surgery" (meaning, not something you want to do unless necessary). Long-term problems with swallowing and speaking may sometimes occur after ACDFs. And recovery times can vary wildly - someone may have a two-level ACDF and be 100% well after 3 weeks of recovery; someone else may have a similar operation and be bedridden for months or forever. 

My two surgeries have helped me a lot - before my first, C5 to C7 ACDF, I had tons of arm pain and numb fingertips, and I dropped things all the time. Within a few hours following surgery, my grip strength and sensation were back and my arm pain was gone. In about a month, I felt well and recovered, and did not require long-term pain relief. 

My second, C2 to T1 ACDF/PCDF surgery has been a much longer, tougher thing to recover from. I did notice immediate improvement in grip strength and finger sensation, but arm pain and neck and shoulder pain took nearly two years to taper off. I still have pain sometimes, but I am 100% off of pain medications and able to exercise regularly (with care). And I was in so much pain before the surgery (from terrible neck/shoulder muscle spasms) that I had to have the ACDF/PCDF. There was no other solution. I had been through physical therapy, taken every possible pain medication and muscle relaxer out there, and still was unable to do more than get out of bed, shower, and collapse on the couch for the day. I was so limited by pain that I laid in bed until I got a bedsore. It didn't help that my overall health and fitness had deteriorated before my combo surgery. Surgery is hard on anyone, and especially hard on people who have other health problems and/or are out of shape.

Additional Resources

I considered linking this post to various studies that reviewed the effectiveness of ACDF surgeries. But then I realized that wasn't the greatest idea. I'm not a doctor, you are probably not a doctor, and doctors are the only ones who really understand the unique set of circumstances in which an ACDF is desirable and appropriate. So, for additional information:

1. Ask your doctor. Repeatedly, if necessary, until you understand exactly what he or she is saying about your unique circumstances. 

2. Ask other patients. Spine-Health.com has extensive forums where people describe and discuss their spine surgeries and spine problems. SteadyHealth.com does also. 

3. Network to find real, live patients and discuss the surgery and recovery with them. I was surprised to find my neighbor three doors down was having spinal fusion surgery a few months after I did. He and I sat around in our cervical collars post-op and had a good time griping and sharing tips. You may find that your friend's boss or cousin's girlfriend, etc. may have had spinal surgery and be willing to discuss it with you. You may also find that people in your surgeon's waiting room are more than willing to discuss their surgeries. You can enjoy an impromptu support group while you wait for your next appointment.

And no matter what, make sure you understand exactly what will be done and why it is necessary before you sign up. ACDF can be wonderful, if done for the right reasons and with the right expectations.

X-Rays: My ACDF/PCDF Journey

I have wanted to post xrays of my various acdf/pcdf surgeries, but hadn't figured out how. Until today! (Place printed xray on doctor's light box or similar, take digital photo, upload photo to blog.)

So here's my neck story, in pictures. The diamond/webbed texture you see in some of the xray images is there because the light box I was using to display my xrays had a textured top. My bones don't actually look like that!

You can click on any photo to view a larger version.

In 2003, I had a 3-three level C5-C7 ACDF (anterior discectomy with fusion) to relieve pressure on my spinal cord from a ruptured disc, along with some nerve impingement from spondylolisthesis (one of my vertebrae had slid forward, out of place) and stenosis (I have a skinny spinal canal). You can clearly see the three sets of screws and plate that were inserted during the surgery.

This is the view from the back of same C5-C7 fusion. As you can see, the plate is held in place with 6 screws, only 5 of which went in (for me - I had a blood vessel in the way of the 6th screw).

Then, in April 2006, over the course of 4 days, I developed severe neck stiffness and muscle spasms that left me nearly unable to move (I couldn't hold my head up... it felt terrible). All the docs I went to assumed it was residual nerve involvement from my C5-C7 surgery, gave me pain meds, and sent me to PT. 

Only in August 2006, after I dragged myself to a new orthopedist, did I get an answer, when that Dr. took the xray above, which showed a complete collapse of the spine above the fusion plate. This swan-neck alignment (this was me holding my neck as straight as I could!) is called cervical kyphosis. My case, having been ignored for four months, had gotten extremely severe (this degree of kyphosis is very, very rare). The doc measured it as being upwards of a 65-degree kyphosis. No wonder I couldn't hold up my head, or move my head side to side or up and down... the muscle spasms had been holding the weight of my skull up for me, as best they could. This is called a protective spasm... when your muscles freeze up to try and hold an injured bone/spine/joint in place.

For comparison's sake, this photo shows what your neck should look like (left), compared to mine as of August 2006 (with the terrible kyphosis).

So, in September of 2006, I went to Johns Hopkins University for two surgeries. The first was an ACDF again, only this time, the doctor had to drill out the old C5-C7 fusion plate and screws, remove them, and put a titanium cage (that cylinder-like thing) in place instead to hold up my neck for me. He then put a larger plate overtop of the cage, and screwed that down.

The second surgery was a PCDF (posterior cervical discectomy with fusion). The surgeon went into the back side of my neck and put in rods and screws to provide additional support for my neck. You can see them more clearly in the picture below. I have to say that the PCDF is the most painful thing I've had done in my life... there is nothing that can prepare you for the sensation of waking up after surgery and realizing that you are laying on your back, feeling all of this new metal sandwiched between you and the mattress.

This is a rear view of the same ACDF/PCDF hardware. You can see two long vertical rods, one short horizontal rod cross-bracing them, several screws, and the rear view of the titanium cage. My doctor would have inserted even more screws than you see here, but I apparently have very thin bone in the location where they normally insert the screws. Too thin, in some places, for them to be able to do it. You can also see from this xray that I have a fair amount of scoliosis in my neck, too... I kind of curve off to the right. That is just my body, and does not have anything to do with the surgery.

Failure Rates for Anterior Cervical Fusion Hardware (Fixation Systems)

As a supplement/footnote to my earlier posts on spinal fusion, I would like to add this link to a chapter titled "Self-Guided Pedicle Screw for Anterior Fixation of Cervical Spine" in Internal Fixation in Osteoporotic Bone, Ed. Yuehuei H. An (Thieme Medical Publishers, 2002). It includes some statistics on the rate of failure (breakage or "backing out") of various hardware systems commonly used in cervical "spinal fusion" surgeries. The numbers are surprisingly high.

See related posts:

What is ACDF and PCDF Surgery, and What Are the Risks?
Tips for Wearing a Cervical Collar (Neck Brace)

What is ACDF and PCDF Surgery, and What Are the Risks?

As our society gets older as a whole, more and more people need ACDF and PCDF surgeries. Last September, I had my own combination ACDF/PCDF surgery (anterior cervical discectomy with fusion, followed by a posterior cervical discectomy with fusion). What are these surgeries? Why do you have them? How do they help? What are the risks? How does the recovery go?

Neck Surgery Vocabulary

First, some basic definitions:

Anterior = front side of your body
Posterior = back side of your body
Cervical = neck
Discectomy = removal of a damaged disc
Fusion = insertion of bone plugs and/or pieces of metal (plates, rods, cages, etc.) into/around spinal bones to encourage bone growth

In a nutshell, an ACDF is a surgery in which a neurosurgeon or orthopedic surgeon opens the front side of your neck to remove damaged discs and correct problems in the alignment of your cervical vertebrae (neck bones). The doctor may use bone plugs and/or hardware to support your spine while it heals into the new alignment. "Spinal fusion" occurs when your body grows bone around/over the hardware and/or bone plugs. (It works in the same way that a broken bone knits itself back together.)

A PCDF is something similar... the surgeon opens the back side of your neck to remove damaged discs and repair cervical alignment and insert bone plugs and/or hardware (most often, rods/screws) to support the spine until "spinal fusion" occurs.

ACDFs and PCDFs are two versions of so-called "spinal fusion" surgeries. You can have an ACDF or PCDF individually, or can have both done in sequence. In September, I was scheduled for an ACDF surgery on a Tuesday and a PCDF the following Friday, with a hospital stay in between. (It didn't work out that way, but that's another story for another day.)

In some ACDF/PCDF operations, the surgeon may use something snazzy called "bone morphogenic protein". (I call it "bone glue".) This special stuff encourages bone growth, increasing the chances for a solid spinal fusion to occur. Read more: Spinal Fusion Surgery and Bone Morphogenic Protein, from Cornell University's Weill Medical College website.

Related Resources:
Spinal Fusion Surgery: What is It? How is It Done?, from the North American Spine Society.

Surgical: Anterior Cervical Discectomy with Fusion, from necksurgery.com. Includes some basic illustrations of the surgical procedure.

Anterior Cervical Discectomy, from SpineUniverse.com

A Patient's Guide to Posterior Cervical Fusion, from the Maryland Spine Center at the University of Maryland Medical Center.

Posterior Cervical Fusion, from the University of Southern California Center for Spinal Surgery.

A Patient's Guide to Cervical Kyphosis, from the University of Maryland Spine Program

Why Would You Need an ACDF or PCDF?

ACDF and PCDF operations are recommended to correct physical misalignment of the cervical spine, which can be due to scoliosis, spondylolisthesis, kyphosis, fractures, and other causes. ACDF and PCDF operations are also sometimes pursued to alleviate pain caused by ruptured discs and/or narrowing of the spinal canal (stenosis). Ruptured discs and stenosis can compress spinal nerves or the spinal cord itself, causing pain. Spinal fusion is a somewhat controversial treatment, as USA Today reports, because it is most effective at alleviating pain caused by nerve or spinal cord compression and less effective at alleviating pain caused by general disc degeneration.

Patients with conditions like arthritis, Marfan Syndrome, cerebral palsy, and muscular dystrophy are more likely to need ACDF/PCDF surgeries. Spinal cancer can also lead a surgeon to recommend an ACDF or PCDF.

What Are The Risks?

ACDF. The largest risks relate to loss of your voice and your ability to swallow. Both can be temporary or permanent. Some patients require feeding tubes after surgery. Others will require a diet of thin liquids for several weeks or months. At a minimum, most patients will need to cut food into very small bites for a few days or weeks after the surgery. Voice loss can be permanent if the surgery damages the recurrent laryngeal nerve. It can also be temporary, caused by post-op swelling.

PCDF. The largest risks relate to the sheer pain of the procedure and the possibility of damage to the spinal cord itself (which can cause death). Many muscles in your shoulders and neck help hold up your head. Cutting through muscles like these creates a LOT of pain. (Doctors will tell you this procedure is gonna hurt, and that's how you know you are REALLY in for it).

Spinal fusion surgeries in general. Fusions and hardware used to support them may break down over time. So you may need another surgery a few years or decades after your first. Each subsequent surgery gets more complex (because there is more old stuff to take out) and more risky (because your body is less willing to fuse each time you have a fusion surgery).

For those of you who love details, here is the exact list of risks associated with my own ACDF/PCDF surgery (keeping in mind that mine was a massive, extreme fusion from C2 to T1):

Swelling, problems with hoarseness, bleeding, infection, leak of cerebrospinal fluid, meningitis, pain, weakness, paralysis, bowel and bladder problems, failure of fusion, need for further surgery, and risks of anesthesia (heart attack, stroke, death, allergic reaction).

What About Recovery?

It takes most patients's bodies 6 weeks to 3 months to begin fusing (for bone to grow over/around the inserted bone plugs and/or plates, rods, screws, etc.) Many patients are cleared to return to work at the first evidence of bone healing. Some may require physical therapy first... your doctor will let you know when it is safe to begin PT. Some patients may need to wear a cervical collar (neck brace) for some or all of the first 6 weeks to 3 months. In more complicated cases, the patient may wear the collar for 6 or even 9 months. See my Tips for Wearing A Cervical Collar if you find yourself in this situation!

Recovery (in terms of pain reduction) can vary greatly depending on how long the pain had been going on before the surgery. The longer your body has nerve pain, the harder it is to turn the pain off, even after the reason for pain (your spine problem) is corrected. In addition, nerves may take up to a year to re-set (to realize they are no longer pinched and thus don't need to generate pain).

In the near term (first few days or weeks after the surgery), you may notice an increase in pain or even new pain (pain in your shoulders instead of your arms, etc.). These will lessen and disappear over time. Hang in there!

Your unique medical situation will impact your recovery timeline. If you have chronic health problems, talk to your doctor about how they may affect your healing process.

Coming Home after ACDF/PCDF Surgery

You will need someone's help to do nearly anything the first few days that you are home. (You may be in pain, lightheaded from pain medications, weak from eating bad hospital food, or all of the above.)

Your doctor will likely put you on restricted activity for some period of time (days, weeks, or months). Typically, you will not be allowed to reach above your shoulders, reach down below your waist, lean forward or backward, bend down to pick things up, carry heavy things, push or pull anything, or twist your spine in any way. Your doctor may also ask you to stay at home (no driving or riding in a vehicle) for a while following your surgery (a small fender-bender could undo all the hard work your surgeon put into repairing your neck).

Tips for Wearing A Cervical Collar (Neck Brace)

OK, I have been stuck wearing a cervical collar (hard neck brace) 24 hours a day, 7 days a week, since early September 2006! Yes, 8 months... and counting. My doc won't let me out of it for at least another month. As a possible world-record holder for wearing a neck brace, I've compiled a few tips to help you cope effectively while wearing a cervical collar yourself.

How did I get so lucky? Long story - I had a major anterior/posterior fusion from C2 to T1, which takes a long time to heal. Also, I have Marfan Syndrome, which means my spine can't hold itself up very well (owing to weak ligaments). Lucky me.. the collar is my new best friend.

Main tips:

1. Before you leave the hospital, have someone show you and your caretaker (hubby, etc.) how to use the collar. How does it open/close? (It may be easier to open only one side.) Where does each pad go? How do you make the collar tighter or looser, or sit higher or lower on your neck? How do you clean it?

2. Practice moving around while you wear the collar--no twisting, no bending. When we need to look at something off to the side, we all twist our heads left or right, rather than turn our entire body. Practice looking left and right by moving your entire body, moving from the hip rather than the spine. Think about military-style movements (turn 90 degrees at a time). Also practice bending your knees to move your body down (like to pick something up off the floor). Bending from your neck/shoulders/chest/waist may not feel good after your surgery.

3. Adjust your dressing/bathing routine. Wear button-down or zip-up shirts and sweaters, slip on shoes, and pull-on pants. Dress in front of a mirror so you can see what your fingers are doing. And consider a team-based approach for bathing and hair washing... it can be easier to have someone else take your collar on and off for you, and towel-dry your hair for you. At first, you might even need someone to help you step in and out of the shower/tub.

4. Tell someone if you have TMJ problems or are super-prone to headaches. The collar pushes up against your jaw, which can give you tension headaches and/or MAJOR TMJ problems.

Additional Tips:

Collar Maintenance:

• Purchase one or more extra sets of pads. Eating with a collar on is really tricky, and may make a mess on your chin pad. It's nice to be able to change it when it gets dirty. If you will be wearing the collar during hot summer months, definitely get extra sets of pads. The collar is hot to wear, and you will sweat onto it. Nasty.
• You may be able to hand-wash your collar's pads with a mild soap like Cetaphil. Look at the instructions that came with your collar (mine came with a "Patient's Guide" booklet) and follow the process the manufacturer recommends. When I had my Miami J collar, I would wash the pads about once a week in cool water using Cetaphil face soap.

Dining:

• It's hard to look down.. so plan to either push your dining chair back or move your dinner plate farther away from you.
• Consider tucking a napkin under chin (between your chin and the collar) when you eat. Eating with a collar on can be messy!
• Say hello to open-face sandwiches. You can’t open your mouth fully with a collar on (it restricts some of the motion of your lower jaw), so massive burgers and cheese steaks will require some knife and fork actioin.

Grooming and Beauty:

• Wax your legs before the collar is on. You aren’t going to feel like shaving them anytime soon (after the surgery). Cut your toenails, too.
• Cut your hair short, or even give it the GI Jane buzz-cut look. You aren’t going to be able to wash your hair for awhile. And it’s easier to wear the collar without hair getting in the way.
• Say goodbye to makeup and to doing any kind of skincare for your lower cheeks and chin/jawline area. The collar is going to be in the way.
• Say hello to premoistened face washing wipes. My favorite is Olay Daily Facials Express Wet Cleansing Cloths, Sensitive Skin, Fragrance Free. Washing your face with a standard soap and water routine can give you wet, soggy pads. These wipes are wet enough to clean with but not so wet as to drip down your face.
• Consider using a super-lightweight, super-absorbent towel to dry your hair, face, and neck. You won't want to put a normal, heavy towel or washcloth on/around your head. It could hurt or just feel uncomfortable. I purchased a microfiber hair drying towel and love using it (I bought an Aquis "Diva Dryer" Hair Towel in pink. Ooh la la.). I will probably never switch back to drying my hair with a normal towel!

Moving Around:

• Say goodbye to your peripheral awareness. You have to turn your entire body to look left or right. It’s exhausting. It's easier for a while to look straight ahead and not worry about what's to the left or right.
• Say goodbye to looking straight down, or looking up high (like the top shelf at the grocery). Forget Bed Bath and Beyond and any other big box store with super-high shelves.
• Be really careful walking down steps. You can’t look down to see where you are putting your feet (especially if you wear glasses).
• Don't drive. It's very difficult.

Sleeping

• Use folded-up or rolled-up towels, blankets, etc. to stabilize your body in a comfortable position. Or you can buy a neckroll type pillow to sleep on. I preferred using rolled-up towels or folded-up blankets because they adjust more than a foam pillow.

Some good news: the collar will get you some much-needed help when you are out in public. People will hold doors open, sales clerks will offer to get things down from high shelves for you, etc. Also, if doors aren't opened for you, learn to look for the blue handicapped door access buttons. You will find them in many places... malls, etc.